Thousands of military veterans who are sick after being exposed to toxic smoke and dust while on duty are facing a Senate roadblock to ambitious legislation designed to provide them care.

The Senate could start work as soon as this week on a bipartisan bill, called the Honoring Our PACT Act, that passed the House of Representatives in March. It would make it much easier for veterans to get health care and benefits from the Veterans Health Administration if they get sick because of the air they breathed around massive, open-air incineration pits. The military used those pits in war zones around the globe — sometimes the size of football fields — to burn anything from human and medical waste to plastics and munitions, setting it alight with jet fuel.

As it stands now, more than three-quarters of all veterans who submit claims for cancer, breathing disorders, and other illnesses that they believe are caused by inhaling poisonous burn pit smoke have their claims denied, according to estimates from the Department of Veterans Affairs and service organizations.

The reason so few are approved is that the military and VA require injured war fighters to prove an illness is directly connected to their service — something that is extremely difficult when it comes to toxic exposures. The House’s PACT Act would make that easier by declaring that any of the 3.5 million veterans who served in the global war on terror — including operations in Afghanistan, Iraq, and the Persian Gulf — would be presumed eligible for benefits if they come down with any of 23 ailments linked to the burn pits.

Although 34 Republicans voted with Democrats to pass the bill in the House, only one Republican, Sen. Marco Rubio of Florida, has signaled support for the measure. At least 10 GOP members would have to join all Democrats to avoid the threat of a filibuster in the Senate and allow the bill to advance to President Joe Biden’s desk. Biden called on Congress to pass such legislation in his State of the Union address, citing the death of his son Beau Biden, who served in Iraq in 2008 and died in 2015 of glioblastoma, a brain cancer included on the bill’s list of qualifying conditions.

Senate Republicans are raising concerns about the measure, however, suggesting it won’t be paid for, that it is too big, too ambitious, and could end up promising more than the government can deliver.

The Congressional Budget Office estimates the bill would cost more than $300 billion over 10 years, and the VA already has struggled for years to meet surging demand from troops serving deployments since the 2001 terror attacks on America, with a backlog of delayed claims running into the hundreds of thousands. Besides addressing burn pits, the bill would expand benefits for veterans who served at certain nuclear sites, and cover more conditions related to Agent Orange exposure in Vietnam, among several other issues.

While the bill phases in coverage for new groups of beneficiaries over 10 years, some Republicans involved in writing legislation about burn pits fear it is all too much.

Sen. Mike Rounds (R-S.D.), a member of the Veterans’ Affairs Committee, summed up the concern as stemming from promising lots of assistance “that might look really good,” but the bottom line is that those “who really need the care would never get into a VA facility.”

Sen. Thom Tillis (R-N.C.), another member of the panel, agreed. “What we’re concerned with is that you’ve got a backlog of 222,000 cases now, and if you implement, by legislative fiat, the 23 presumptions, we’re gonna go to a million and a half to two and a half million backlog,” he said. Tillis has advanced his own burn pits bill that would leave it to the military and VA to determine which illnesses automatically were presumed to be service-connected. That tally is likely to cover fewer people. “So the question we have is, while making a new promise, are we going to be breaking a promise for all those veterans that need care today?”

Republicans have insisted they want to do something to help veterans who are increasingly getting sick with illnesses that appear related to toxic exposure. About 300,000 veterans have signed up with the VA’s burn pits registry.

Sen. Jerry Moran from Kansas, the top Republican on the Veterans’ Affairs Committee, held a press conference in February with Sen. Jon Tester (D-Mont.), the committee chairman, advocating a more gradual process to expand access to benefits and define the illnesses that would qualify.

The event was designed to show what would easily gain bipartisan support in the Senate while the House was still working on its bill.

Veterans’ service organizations, which try to avoid taking partisan positions, have praised such efforts. But they’ve also made clear they like the House bill. More than 40 of the groups endorsed the PACT Act before it passed the lower chamber.

Aleks Morosky, a governmental affairs specialist for the Wounded Warrior Project, plans to meet with senators this month in hope of advancing the PACT Act.

“This is an urgent issue. I mean, people are dying,” Morosky said.

He added that he believes some minor changes and input from the VA would eliminate the sorts of problems senators are raising.

“This bill was meticulously put together, and these are the provisions that veterans need,” Morosky said. “The VA is telling us that they can implement it the way they’ve implemented large numbers of people coming into the system in the past.”

He pointed to the recent expansion of Agent Orange benefits to Navy veterans and to VA Secretary Denis McDonough’s testimony to the Senate Veterans’ Affairs committee in March. McDonough largely supported the legislation but said the VA would need new leasing authority to ensure it had adequate facilities, as well as more say over adding illnesses to be covered.

Senate Republicans are not so sure about the VA’s ability to absorb such a large group of new patients. Tillis and Rounds suggested one solution would be to greatly expand the access to care veterans can seek outside the VA. They pointed to the Mission Act, a law passed in 2018 that was meant to grant veterans access to private health care. Some critics say it has not lived up to its promise. It’s also been expensive, requiring emergency appropriations from Congress.

“You better think about having community care — because there’s no way you’re going to be able to ramp up the medical infrastructure to provide that purely through the VA,” Tillis said.

Tester said in a statement that the committee was working on McDonough’s requests — and could have a modified bill for a vote before Memorial Day.

“In addition to delivering historic reform for all generations of toxic-exposed veterans, I’m working to ensure this legislation provides VA with additional resources and authorities to hire more staff, establish new facilities, and make critical investments to better ensure it can meet the current and future needs of our nation’s veterans,” Tester said.

Whether or not those changes satisfy enough Republicans remains to be seen.

Sen. Kirsten Gillibrand (D-N.Y.), who chairs the Armed Services subcommittee on personnel and earlier wrote a burn pits bill, said neither cost nor fears about problems on implementation should get in the way of passing the bill. Her proposal was incorporated into the House’s PACT Act.

“To deny service because of a lack of resources or a lack of personnel is an outrageous statement,” Gillibrand said. “We promised these men and women when they went to war that when they came back, we would protect them. And that is our solemn obligation. And if it needs more resources, we will get them more resources.”

She predicted Republicans would come along to help pass a bill.

“I’m optimistic, actually. I think we just need a little more time to talk to more Republicans to get everybody on board,” she said.

Thousands of military veterans who are sick after being exposed to toxic smoke and dust while on duty are facing a Senate roadblock to ambitious legislation designed to provide them care.

The Senate could start work as soon as this week on a bipartisan bill, called the Honoring Our PACT Act, that passed the House of Representatives in March. It would make it much easier for veterans to get health care and benefits from the Veterans Health Administration if they get sick because of the air they breathed around massive, open-air incineration pits. The military used those pits in war zones around the globe — sometimes the size of football fields — to burn anything from human and medical waste to plastics and munitions, setting it alight with jet fuel.

As it stands now, more than three-quarters of all veterans who submit claims for cancer, breathing disorders, and other illnesses that they believe are caused by inhaling poisonous burn pit smoke have their claims denied, according to estimates from the Department of Veterans Affairs and service organizations.

The reason so few are approved is that the military and VA require injured war fighters to prove an illness is directly connected to their service — something that is extremely difficult when it comes to toxic exposures. The House’s PACT Act would make that easier by declaring that any of the 3.5 million veterans who served in the global war on terror — including operations in Afghanistan, Iraq, and the Persian Gulf — would be presumed eligible for benefits if they come down with any of 23 ailments linked to the burn pits.

Although 34 Republicans voted with Democrats to pass the bill in the House, only one Republican, Sen. Marco Rubio of Florida, has signaled support for the measure. At least 10 GOP members would have to join all Democrats to avoid the threat of a filibuster in the Senate and allow the bill to advance to President Joe Biden’s desk. Biden called on Congress to pass such legislation in his State of the Union address, citing the death of his son Beau Biden, who served in Iraq in 2008 and died in 2015 of glioblastoma, a brain cancer included on the bill’s list of qualifying conditions.

Senate Republicans are raising concerns about the measure, however, suggesting it won’t be paid for, that it is too big, too ambitious, and could end up promising more than the government can deliver.

The Congressional Budget Office estimates the bill would cost more than $300 billion over 10 years, and the VA already has struggled for years to meet surging demand from troops serving deployments since the 2001 terror attacks on America, with a backlog of delayed claims running into the hundreds of thousands. Besides addressing burn pits, the bill would expand benefits for veterans who served at certain nuclear sites, and cover more conditions related to Agent Orange exposure in Vietnam, among several other issues.

While the bill phases in coverage for new groups of beneficiaries over 10 years, some Republicans involved in writing legislation about burn pits fear it is all too much.

Sen. Mike Rounds (R-S.D.), a member of the Veterans’ Affairs Committee, summed up the concern as stemming from promising lots of assistance “that might look really good,” but the bottom line is that those “who really need the care would never get into a VA facility.”

Sen. Thom Tillis (R-N.C.), another member of the panel, agreed. “What we’re concerned with is that you’ve got a backlog of 222,000 cases now, and if you implement, by legislative fiat, the 23 presumptions, we’re gonna go to a million and a half to two and a half million backlog,” he said. Tillis has advanced his own burn pits bill that would leave it to the military and VA to determine which illnesses automatically were presumed to be service-connected. That tally is likely to cover fewer people. “So the question we have is, while making a new promise, are we going to be breaking a promise for all those veterans that need care today?”

Republicans have insisted they want to do something to help veterans who are increasingly getting sick with illnesses that appear related to toxic exposure. About 300,000 veterans have signed up with the VA’s burn pits registry.

Sen. Jerry Moran from Kansas, the top Republican on the Veterans’ Affairs Committee, held a press conference in February with Sen. Jon Tester (D-Mont.), the committee chairman, advocating a more gradual process to expand access to benefits and define the illnesses that would qualify.

The event was designed to show what would easily gain bipartisan support in the Senate while the House was still working on its bill.

Veterans’ service organizations, which try to avoid taking partisan positions, have praised such efforts. But they’ve also made clear they like the House bill. More than 40 of the groups endorsed the PACT Act before it passed the lower chamber.

Aleks Morosky, a governmental affairs specialist for the Wounded Warrior Project, plans to meet with senators this month in hope of advancing the PACT Act.

“This is an urgent issue. I mean, people are dying,” Morosky said.

He added that he believes some minor changes and input from the VA would eliminate the sorts of problems senators are raising.

“This bill was meticulously put together, and these are the provisions that veterans need,” Morosky said. “The VA is telling us that they can implement it the way they’ve implemented large numbers of people coming into the system in the past.”

He pointed to the recent expansion of Agent Orange benefits to Navy veterans and to VA Secretary Denis McDonough’s testimony to the Senate Veterans’ Affairs committee in March. McDonough largely supported the legislation but said the VA would need new leasing authority to ensure it had adequate facilities, as well as more say over adding illnesses to be covered.

Senate Republicans are not so sure about the VA’s ability to absorb such a large group of new patients. Tillis and Rounds suggested one solution would be to greatly expand the access to care veterans can seek outside the VA. They pointed to the Mission Act, a law passed in 2018 that was meant to grant veterans access to private health care. Some critics say it has not lived up to its promise. It’s also been expensive, requiring emergency appropriations from Congress.

“You better think about having community care — because there’s no way you’re going to be able to ramp up the medical infrastructure to provide that purely through the VA,” Tillis said.

Tester said in a statement that the committee was working on McDonough’s requests — and could have a modified bill for a vote before Memorial Day.

“In addition to delivering historic reform for all generations of toxic-exposed veterans, I’m working to ensure this legislation provides VA with additional resources and authorities to hire more staff, establish new facilities, and make critical investments to better ensure it can meet the current and future needs of our nation’s veterans,” Tester said.

Whether or not those changes satisfy enough Republicans remains to be seen.

Sen. Kirsten Gillibrand (D-N.Y.), who chairs the Armed Services subcommittee on personnel and earlier wrote a burn pits bill, said neither cost nor fears about problems on implementation should get in the way of passing the bill. Her proposal was incorporated into the House’s PACT Act.

“To deny service because of a lack of resources or a lack of personnel is an outrageous statement,” Gillibrand said. “We promised these men and women when they went to war that when they came back, we would protect them. And that is our solemn obligation. And if it needs more resources, we will get them more resources.”

She predicted Republicans would come along to help pass a bill.

“I’m optimistic, actually. I think we just need a little more time to talk to more Republicans to get everybody on board,” she said.

Thousands of military veterans who are sick after being exposed to toxic smoke and dust while on duty are facing a Senate roadblock to ambitious legislation designed to provide them care.

The Senate could start work as soon as this week on a bipartisan bill, called the Honoring Our PACT Act, that passed the House of Representatives in March. It would make it much easier for veterans to get health care and benefits from the Veterans Health Administration if they get sick because of the air they breathed around massive, open-air incineration pits. The military used those pits in war zones around the globe — sometimes the size of football fields — to burn anything from human and medical waste to plastics and munitions, setting it alight with jet fuel.

As it stands now, more than three-quarters of all veterans who submit claims for cancer, breathing disorders, and other illnesses that they believe are caused by inhaling poisonous burn pit smoke have their claims denied, according to estimates from the Department of Veterans Affairs and service organizations.

The reason so few are approved is that the military and VA require injured war fighters to prove an illness is directly connected to their service — something that is extremely difficult when it comes to toxic exposures. The House’s PACT Act would make that easier by declaring that any of the 3.5 million veterans who served in the global war on terror — including operations in Afghanistan, Iraq, and the Persian Gulf — would be presumed eligible for benefits if they come down with any of 23 ailments linked to the burn pits.

Although 34 Republicans voted with Democrats to pass the bill in the House, only one Republican, Sen. Marco Rubio of Florida, has signaled support for the measure. At least 10 GOP members would have to join all Democrats to avoid the threat of a filibuster in the Senate and allow the bill to advance to President Joe Biden’s desk. Biden called on Congress to pass such legislation in his State of the Union address, citing the death of his son Beau Biden, who served in Iraq in 2008 and died in 2015 of glioblastoma, a brain cancer included on the bill’s list of qualifying conditions.

Senate Republicans are raising concerns about the measure, however, suggesting it won’t be paid for, that it is too big, too ambitious, and could end up promising more than the government can deliver.

The Congressional Budget Office estimates the bill would cost more than $300 billion over 10 years, and the VA already has struggled for years to meet surging demand from troops serving deployments since the 2001 terror attacks on America, with a backlog of delayed claims running into the hundreds of thousands. Besides addressing burn pits, the bill would expand benefits for veterans who served at certain nuclear sites, and cover more conditions related to Agent Orange exposure in Vietnam, among several other issues.

While the bill phases in coverage for new groups of beneficiaries over 10 years, some Republicans involved in writing legislation about burn pits fear it is all too much.

Sen. Mike Rounds (R-S.D.), a member of the Veterans’ Affairs Committee, summed up the concern as stemming from promising lots of assistance “that might look really good,” but the bottom line is that those “who really need the care would never get into a VA facility.”

Sen. Thom Tillis (R-N.C.), another member of the panel, agreed. “What we’re concerned with is that you’ve got a backlog of 222,000 cases now, and if you implement, by legislative fiat, the 23 presumptions, we’re gonna go to a million and a half to two and a half million backlog,” he said. Tillis has advanced his own burn pits bill that would leave it to the military and VA to determine which illnesses automatically were presumed to be service-connected. That tally is likely to cover fewer people. “So the question we have is, while making a new promise, are we going to be breaking a promise for all those veterans that need care today?”

Republicans have insisted they want to do something to help veterans who are increasingly getting sick with illnesses that appear related to toxic exposure. About 300,000 veterans have signed up with the VA’s burn pits registry.

Sen. Jerry Moran from Kansas, the top Republican on the Veterans’ Affairs Committee, held a press conference in February with Sen. Jon Tester (D-Mont.), the committee chairman, advocating a more gradual process to expand access to benefits and define the illnesses that would qualify.

The event was designed to show what would easily gain bipartisan support in the Senate while the House was still working on its bill.

Veterans’ service organizations, which try to avoid taking partisan positions, have praised such efforts. But they’ve also made clear they like the House bill. More than 40 of the groups endorsed the PACT Act before it passed the lower chamber.

Aleks Morosky, a governmental affairs specialist for the Wounded Warrior Project, plans to meet with senators this month in hope of advancing the PACT Act.

“This is an urgent issue. I mean, people are dying,” Morosky said.

He added that he believes some minor changes and input from the VA would eliminate the sorts of problems senators are raising.

“This bill was meticulously put together, and these are the provisions that veterans need,” Morosky said. “The VA is telling us that they can implement it the way they’ve implemented large numbers of people coming into the system in the past.”

He pointed to the recent expansion of Agent Orange benefits to Navy veterans and to VA Secretary Denis McDonough’s testimony to the Senate Veterans’ Affairs committee in March. McDonough largely supported the legislation but said the VA would need new leasing authority to ensure it had adequate facilities, as well as more say over adding illnesses to be covered.

Senate Republicans are not so sure about the VA’s ability to absorb such a large group of new patients. Tillis and Rounds suggested one solution would be to greatly expand the access to care veterans can seek outside the VA. They pointed to the Mission Act, a law passed in 2018 that was meant to grant veterans access to private health care. Some critics say it has not lived up to its promise. It’s also been expensive, requiring emergency appropriations from Congress.

“You better think about having community care — because there’s no way you’re going to be able to ramp up the medical infrastructure to provide that purely through the VA,” Tillis said.

Tester said in a statement that the committee was working on McDonough’s requests — and could have a modified bill for a vote before Memorial Day.

“In addition to delivering historic reform for all generations of toxic-exposed veterans, I’m working to ensure this legislation provides VA with additional resources and authorities to hire more staff, establish new facilities, and make critical investments to better ensure it can meet the current and future needs of our nation’s veterans,” Tester said.

Whether or not those changes satisfy enough Republicans remains to be seen.

Sen. Kirsten Gillibrand (D-N.Y.), who chairs the Armed Services subcommittee on personnel and earlier wrote a burn pits bill, said neither cost nor fears about problems on implementation should get in the way of passing the bill. Her proposal was incorporated into the House’s PACT Act.

“To deny service because of a lack of resources or a lack of personnel is an outrageous statement,” Gillibrand said. “We promised these men and women when they went to war that when they came back, we would protect them. And that is our solemn obligation. And if it needs more resources, we will get them more resources.”

She predicted Republicans would come along to help pass a bill.

“I’m optimistic, actually. I think we just need a little more time to talk to more Republicans to get everybody on board,” she said.

Noninvasive brain stimulation does not appear to augment cognitive behavioral therapy (CBT) in patients with major depressive disorder (MDD), new research shows.

Results of a multicenter, placebo-controlled randomized clinical trials showed adjunctive transcranial direct current stimulation (tDCS) was not superior to sham-tDCS plus CBT or CBT alone.

“Combining these interventions does not lead to added value. This is an example where negative findings guide the way of future studies. What we learned is that we might change things in a few dimensions,” study investigator Malek Bajbouj, MD, Charité University Hospital, Berlin, told this news organization.

Charité University Hospital, Berlin

Urgent need for better treatment

MDD affects 10% of the global population. However, up to 30% of patients have an inadequate response to standard treatment of CBT, pharmacotherapy, or a combination of the two, highlighting the need to develop more effective therapeutic strategies, the investigators note.

A noninvasive approach, tDCS, in healthy populations, has been shown to enhance cognitive function in brain regions that are also relevant for CBT. Specifically, the investigators point out that tDCS can “positively modulate neuronal activity in prefrontal structures central for affective and cognitive processes,” including emotion regulation, cognitive control working memory, and learning.

Based on this early data, the investigators conducted a randomized, placebo-controlled trial to determine whether tDCS combined with CBT might have clinically relevant synergistic effects.

The multicenter study included adults aged 20-65 years with a single or recurrent depressive episode who were either not receiving medication or receiving a stable regimen of selective serotonin reuptake inhibitors (SSRIs) or mirtazapine (Remeron).

A total of 148 participants (89 women, 59 men) with a mean age of 41 years were randomly assigned to receive CBT alone (n = 53), CBT+ tDCS (n = 48) or CBT + sham tDCS (n = 47).

Participants attended a 6-week group intervention of 12 sessions of CBT. If assigned, tDCS was applied simultaneously. Active tDCS included stimulation with an intensity of 2 milliamps for 30 minutes.

The study’s primary outcome was the change in Montgomery-Åsberg Depression Rating Scale (MADRS) from baseline to post treatment in the intention-to-treat sample. A total of 126 patients completed the study.

At baseline, the average MADRS score was 23.0. In each of the study groups, MADRS scores were reduced by a mean of 6.5 points (95% confidence interval, 3.82-9.14 points). The Cohen d value was -0.90 (95% CI, -1.43 to -0.50), indicating a significant effect over time, the researchers report. However, they add that “there was not significant effect of group and no significant interaction of group x time, indicating the estimated additive effects were not statistically significant.” 

Results suggest that more research is needed to optimize treatment synchronization to achieve synergies between noninvasive brain stimulation and psychotherapeutic interventions.
 

Beauty and promise

Commenting on the findings, Mark George, MD, director of the Medical University of South Carolina Center for Advanced Imaging Research and the Brain Stimulation Laboratory, Charleston, described the study as “a really good effort by a great group of researchers.”

It’s unclear, he added, why tDCS failed to augment CBT. “It may be about the nongeneralizability of tDCS to complex functions, it may be that they didn’t get the dose right, or it might be due to a placebo response,” he speculated.  

Furthermore, “tDCS is the most simple form of brain stimulation. The beauty and promise of tDCS is that it is so inexpensive and safe,” Dr. George added.

If proven effective, tDCS could potentially be used at home and rolled out as a frontline therapy for depression, he added. “Everybody wants the technology to work as an antidepressant, since it could have a very big positive public health impact,” said Dr. George.

Referring to previous research showing tDCS’ ability to improve specific brain functions in healthy controls, Dr. George noted that the potential of tDCS may be limited to augmenting specific brain functions such as memory but not more complex behaviors like depression.

However, Dr. George believes a more plausible explanation is that the optimal dose for tDCS has not yet been determined.

With other types of neuromodulation, such as electroconvulsive therapy, “we know that we’re in the brain with the right dose. But for tDCS, we don’t know that, and we’ve got to figure that out before it’s ever really going to make it [as a treatment],” he said.

“There have been great advances through the years in the field of brain stimulation and the treatment of depression. But rates of depression and suicide are continuing to grow, and we have not yet made a significant dent in treatment, in part because these technologies require equipment, [and] they’re expensive. So when we figure out tDCS, it will be a very important piece of our toolkit – a real game changer,” Dr. George added.

A version of this article first appeared on Medscape.com.

Noninvasive brain stimulation does not appear to augment cognitive behavioral therapy (CBT) in patients with major depressive disorder (MDD), new research shows.

Results of a multicenter, placebo-controlled randomized clinical trials showed adjunctive transcranial direct current stimulation (tDCS) was not superior to sham-tDCS plus CBT or CBT alone.

“Combining these interventions does not lead to added value. This is an example where negative findings guide the way of future studies. What we learned is that we might change things in a few dimensions,” study investigator Malek Bajbouj, MD, Charité University Hospital, Berlin, told this news organization.

Charité University Hospital, Berlin

Urgent need for better treatment

MDD affects 10% of the global population. However, up to 30% of patients have an inadequate response to standard treatment of CBT, pharmacotherapy, or a combination of the two, highlighting the need to develop more effective therapeutic strategies, the investigators note.

A noninvasive approach, tDCS, in healthy populations, has been shown to enhance cognitive function in brain regions that are also relevant for CBT. Specifically, the investigators point out that tDCS can “positively modulate neuronal activity in prefrontal structures central for affective and cognitive processes,” including emotion regulation, cognitive control working memory, and learning.

Based on this early data, the investigators conducted a randomized, placebo-controlled trial to determine whether tDCS combined with CBT might have clinically relevant synergistic effects.

The multicenter study included adults aged 20-65 years with a single or recurrent depressive episode who were either not receiving medication or receiving a stable regimen of selective serotonin reuptake inhibitors (SSRIs) or mirtazapine (Remeron).

A total of 148 participants (89 women, 59 men) with a mean age of 41 years were randomly assigned to receive CBT alone (n = 53), CBT+ tDCS (n = 48) or CBT + sham tDCS (n = 47).

Participants attended a 6-week group intervention of 12 sessions of CBT. If assigned, tDCS was applied simultaneously. Active tDCS included stimulation with an intensity of 2 milliamps for 30 minutes.

The study’s primary outcome was the change in Montgomery-Åsberg Depression Rating Scale (MADRS) from baseline to post treatment in the intention-to-treat sample. A total of 126 patients completed the study.

At baseline, the average MADRS score was 23.0. In each of the study groups, MADRS scores were reduced by a mean of 6.5 points (95% confidence interval, 3.82-9.14 points). The Cohen d value was -0.90 (95% CI, -1.43 to -0.50), indicating a significant effect over time, the researchers report. However, they add that “there was not significant effect of group and no significant interaction of group x time, indicating the estimated additive effects were not statistically significant.” 

Results suggest that more research is needed to optimize treatment synchronization to achieve synergies between noninvasive brain stimulation and psychotherapeutic interventions.
 

Beauty and promise

Commenting on the findings, Mark George, MD, director of the Medical University of South Carolina Center for Advanced Imaging Research and the Brain Stimulation Laboratory, Charleston, described the study as “a really good effort by a great group of researchers.”

It’s unclear, he added, why tDCS failed to augment CBT. “It may be about the nongeneralizability of tDCS to complex functions, it may be that they didn’t get the dose right, or it might be due to a placebo response,” he speculated.  

Furthermore, “tDCS is the most simple form of brain stimulation. The beauty and promise of tDCS is that it is so inexpensive and safe,” Dr. George added.

If proven effective, tDCS could potentially be used at home and rolled out as a frontline therapy for depression, he added. “Everybody wants the technology to work as an antidepressant, since it could have a very big positive public health impact,” said Dr. George.

Referring to previous research showing tDCS’ ability to improve specific brain functions in healthy controls, Dr. George noted that the potential of tDCS may be limited to augmenting specific brain functions such as memory but not more complex behaviors like depression.

However, Dr. George believes a more plausible explanation is that the optimal dose for tDCS has not yet been determined.

With other types of neuromodulation, such as electroconvulsive therapy, “we know that we’re in the brain with the right dose. But for tDCS, we don’t know that, and we’ve got to figure that out before it’s ever really going to make it [as a treatment],” he said.

“There have been great advances through the years in the field of brain stimulation and the treatment of depression. But rates of depression and suicide are continuing to grow, and we have not yet made a significant dent in treatment, in part because these technologies require equipment, [and] they’re expensive. So when we figure out tDCS, it will be a very important piece of our toolkit – a real game changer,” Dr. George added.

A version of this article first appeared on Medscape.com.

Noninvasive brain stimulation does not appear to augment cognitive behavioral therapy (CBT) in patients with major depressive disorder (MDD), new research shows.

Results of a multicenter, placebo-controlled randomized clinical trials showed adjunctive transcranial direct current stimulation (tDCS) was not superior to sham-tDCS plus CBT or CBT alone.

“Combining these interventions does not lead to added value. This is an example where negative findings guide the way of future studies. What we learned is that we might change things in a few dimensions,” study investigator Malek Bajbouj, MD, Charité University Hospital, Berlin, told this news organization.

Charité University Hospital, Berlin

Urgent need for better treatment

MDD affects 10% of the global population. However, up to 30% of patients have an inadequate response to standard treatment of CBT, pharmacotherapy, or a combination of the two, highlighting the need to develop more effective therapeutic strategies, the investigators note.

A noninvasive approach, tDCS, in healthy populations, has been shown to enhance cognitive function in brain regions that are also relevant for CBT. Specifically, the investigators point out that tDCS can “positively modulate neuronal activity in prefrontal structures central for affective and cognitive processes,” including emotion regulation, cognitive control working memory, and learning.

Based on this early data, the investigators conducted a randomized, placebo-controlled trial to determine whether tDCS combined with CBT might have clinically relevant synergistic effects.

The multicenter study included adults aged 20-65 years with a single or recurrent depressive episode who were either not receiving medication or receiving a stable regimen of selective serotonin reuptake inhibitors (SSRIs) or mirtazapine (Remeron).

A total of 148 participants (89 women, 59 men) with a mean age of 41 years were randomly assigned to receive CBT alone (n = 53), CBT+ tDCS (n = 48) or CBT + sham tDCS (n = 47).

Participants attended a 6-week group intervention of 12 sessions of CBT. If assigned, tDCS was applied simultaneously. Active tDCS included stimulation with an intensity of 2 milliamps for 30 minutes.

The study’s primary outcome was the change in Montgomery-Åsberg Depression Rating Scale (MADRS) from baseline to post treatment in the intention-to-treat sample. A total of 126 patients completed the study.

At baseline, the average MADRS score was 23.0. In each of the study groups, MADRS scores were reduced by a mean of 6.5 points (95% confidence interval, 3.82-9.14 points). The Cohen d value was -0.90 (95% CI, -1.43 to -0.50), indicating a significant effect over time, the researchers report. However, they add that “there was not significant effect of group and no significant interaction of group x time, indicating the estimated additive effects were not statistically significant.” 

Results suggest that more research is needed to optimize treatment synchronization to achieve synergies between noninvasive brain stimulation and psychotherapeutic interventions.
 

Beauty and promise

Commenting on the findings, Mark George, MD, director of the Medical University of South Carolina Center for Advanced Imaging Research and the Brain Stimulation Laboratory, Charleston, described the study as “a really good effort by a great group of researchers.”

It’s unclear, he added, why tDCS failed to augment CBT. “It may be about the nongeneralizability of tDCS to complex functions, it may be that they didn’t get the dose right, or it might be due to a placebo response,” he speculated.  

Furthermore, “tDCS is the most simple form of brain stimulation. The beauty and promise of tDCS is that it is so inexpensive and safe,” Dr. George added.

If proven effective, tDCS could potentially be used at home and rolled out as a frontline therapy for depression, he added. “Everybody wants the technology to work as an antidepressant, since it could have a very big positive public health impact,” said Dr. George.

Referring to previous research showing tDCS’ ability to improve specific brain functions in healthy controls, Dr. George noted that the potential of tDCS may be limited to augmenting specific brain functions such as memory but not more complex behaviors like depression.

However, Dr. George believes a more plausible explanation is that the optimal dose for tDCS has not yet been determined.

With other types of neuromodulation, such as electroconvulsive therapy, “we know that we’re in the brain with the right dose. But for tDCS, we don’t know that, and we’ve got to figure that out before it’s ever really going to make it [as a treatment],” he said.

“There have been great advances through the years in the field of brain stimulation and the treatment of depression. But rates of depression and suicide are continuing to grow, and we have not yet made a significant dent in treatment, in part because these technologies require equipment, [and] they’re expensive. So when we figure out tDCS, it will be a very important piece of our toolkit – a real game changer,” Dr. George added.

A version of this article first appeared on Medscape.com.

A large percentage of studies in neurology and psychiatry over the past decade have failed to account for differences between the sexes, according to a team of Canadian researchers.

In a survey of more than 3,000 papers published in six neuroscience and psychiatry journals from 2009 to 2019, researchers found that only 5% analyzed sex as a variable.

“Despite the fact there are papers that are using males and females in the studies, they’re not using the males and females in the way that would optimally find the possibility of sex differences,” lead author Liisa A.M. Galea, PhD, told this news organization. Dr. Galea is a professor and distinguished scholar at the Djavad Mowafaghian Center for Brain Health at the University of British Columbia in Vancouver.

The study was published online in Nature Communications.
 

Optimal design uncommon

Differences in how neurologic and psychiatric diseases affect men and women have been well documented. Women, for example, are more susceptible to severe stroke, and men are more prone to cognitive decline with schizophrenia. With Alzheimer’s disease, women typically have more severe cognitive defects.

The researchers surveyed 3,193 papers that included a multitude of studies. Although most of the papers reported studies that included both sexes, only 19% of surveyed studies used what Dr. Galea called an optimal design for the discovery of sex differences. “What I mean by ‘optimally’ is the design of the experiments and the analysis of sex as a variable,” she said. And in 2019, only 5% of the studies used sex as a variable for determining differences between the sexes, the study found.

In the current research, two authors read the methods and results of each study described in each paper, Dr. Galea said. The readers noted whether the paper reported the study sample size and whether the studies used a balanced design. The surveyed journals include Nature Neuroscience, Neuron, Journal of Neuroscience, Molecular Psychiatry, Biological Psychiatry, and Neuropsychopharmacology.
 

‘Not much is changing’

“I had a suspicion that this was happening,” Dr. Galea said. “I didn’t know that it’s so bad, to be fair.” The “good news story,” she said, is that more papers considered sex as a factor in the later years surveyed. In 2019, more than 95% of papers across both disciplines reported participants’ sex, compared with about 70% in 2009. However, less than 20% of the papers in all study years reported studies that used sex optimally to determine differences between the sexes.

“The other thing that shocked me,” Dr. Galea said, “was that even despite the fact that we saw this increase in the number of papers that were using males and females, we didn’t see the sort of corresponding increase in those that were using ‘optimal design’ or ‘optimal analysis,’ ” Dr. Galea said. In 2009, 14% of papers used optimal design and 2% used optimal analysis for determining sex differences. By 2019, those percentages were 19% and 5%, respectively.

But even the papers that used both sexes had shortcomings, the study found. Just over one-third of these papers (34.5%) didn’t use a balanced design. Just over one-quarter (25.9%) didn’t identify the sample size, a shortcoming that marked 18% of these studies in 2009 and 33% in 2019. Fifteen percent of papers examined included studies that used both sexes inconsistently.

“That matters, because other studies have found that about 20% of papers are doing some kind of analysis with sex, but we had a suspicion that a lot of studies would include sex as a covariate,” Dr. Galea said. “Essentially what that does is, you remove that variable from the data. So, any statistical variation due to sex is then gone.

“The problem with that,” she added, “is you’re not actually looking to see if there’s an influence of sex; you’re removing it.”

Dr. Galea noted that this study points to a need for funding agencies to demand that researchers meet their mandates on sex- and gender-based analysis. “Despite the mandates, not much is really changing as far as the analysis or design of experiments, and we need to figure out how to change that,” she said. “We need to figure out how to get researchers more interested to use the power of studying sex differences.”
 

‘Not surprising, but disappointing’

Vladimir Hachinski, MD, professor of neurology and epidemiology at Western University in London, Ont., and former editor in chief of Stroke, told this news organization that women have almost twice the life risk of developing dementia, are at higher risk of stroke below age 35 years, and have more severe strokes and higher rates of disability at any age.

Commenting on the current study, Dr. Hachinski said, “It’s not surprising, but it’s disappointing, because we’ve known the difference for a long time.” He added, “The paper is very important because we were not aware that it was that bad.”

Dr. Hachinski also stated, “This paper needs a lot of reading. It’s a great resource, and it should be highlighted as one of those things that needs to be addressed, because it matters.”

The study was funded by a Natural Sciences and Engineering Research Council of Canada grant and by the British Columbia Women’s Foundation. Dr. Galea and Hachinski had no relevant disclosures.

A version of this article first appeared on Medscape.com.

A large percentage of studies in neurology and psychiatry over the past decade have failed to account for differences between the sexes, according to a team of Canadian researchers.

In a survey of more than 3,000 papers published in six neuroscience and psychiatry journals from 2009 to 2019, researchers found that only 5% analyzed sex as a variable.

“Despite the fact there are papers that are using males and females in the studies, they’re not using the males and females in the way that would optimally find the possibility of sex differences,” lead author Liisa A.M. Galea, PhD, told this news organization. Dr. Galea is a professor and distinguished scholar at the Djavad Mowafaghian Center for Brain Health at the University of British Columbia in Vancouver.

The study was published online in Nature Communications.
 

Optimal design uncommon

Differences in how neurologic and psychiatric diseases affect men and women have been well documented. Women, for example, are more susceptible to severe stroke, and men are more prone to cognitive decline with schizophrenia. With Alzheimer’s disease, women typically have more severe cognitive defects.

The researchers surveyed 3,193 papers that included a multitude of studies. Although most of the papers reported studies that included both sexes, only 19% of surveyed studies used what Dr. Galea called an optimal design for the discovery of sex differences. “What I mean by ‘optimally’ is the design of the experiments and the analysis of sex as a variable,” she said. And in 2019, only 5% of the studies used sex as a variable for determining differences between the sexes, the study found.

In the current research, two authors read the methods and results of each study described in each paper, Dr. Galea said. The readers noted whether the paper reported the study sample size and whether the studies used a balanced design. The surveyed journals include Nature Neuroscience, Neuron, Journal of Neuroscience, Molecular Psychiatry, Biological Psychiatry, and Neuropsychopharmacology.
 

‘Not much is changing’

“I had a suspicion that this was happening,” Dr. Galea said. “I didn’t know that it’s so bad, to be fair.” The “good news story,” she said, is that more papers considered sex as a factor in the later years surveyed. In 2019, more than 95% of papers across both disciplines reported participants’ sex, compared with about 70% in 2009. However, less than 20% of the papers in all study years reported studies that used sex optimally to determine differences between the sexes.

“The other thing that shocked me,” Dr. Galea said, “was that even despite the fact that we saw this increase in the number of papers that were using males and females, we didn’t see the sort of corresponding increase in those that were using ‘optimal design’ or ‘optimal analysis,’ ” Dr. Galea said. In 2009, 14% of papers used optimal design and 2% used optimal analysis for determining sex differences. By 2019, those percentages were 19% and 5%, respectively.

But even the papers that used both sexes had shortcomings, the study found. Just over one-third of these papers (34.5%) didn’t use a balanced design. Just over one-quarter (25.9%) didn’t identify the sample size, a shortcoming that marked 18% of these studies in 2009 and 33% in 2019. Fifteen percent of papers examined included studies that used both sexes inconsistently.

“That matters, because other studies have found that about 20% of papers are doing some kind of analysis with sex, but we had a suspicion that a lot of studies would include sex as a covariate,” Dr. Galea said. “Essentially what that does is, you remove that variable from the data. So, any statistical variation due to sex is then gone.

“The problem with that,” she added, “is you’re not actually looking to see if there’s an influence of sex; you’re removing it.”

Dr. Galea noted that this study points to a need for funding agencies to demand that researchers meet their mandates on sex- and gender-based analysis. “Despite the mandates, not much is really changing as far as the analysis or design of experiments, and we need to figure out how to change that,” she said. “We need to figure out how to get researchers more interested to use the power of studying sex differences.”
 

‘Not surprising, but disappointing’

Vladimir Hachinski, MD, professor of neurology and epidemiology at Western University in London, Ont., and former editor in chief of Stroke, told this news organization that women have almost twice the life risk of developing dementia, are at higher risk of stroke below age 35 years, and have more severe strokes and higher rates of disability at any age.

Commenting on the current study, Dr. Hachinski said, “It’s not surprising, but it’s disappointing, because we’ve known the difference for a long time.” He added, “The paper is very important because we were not aware that it was that bad.”

Dr. Hachinski also stated, “This paper needs a lot of reading. It’s a great resource, and it should be highlighted as one of those things that needs to be addressed, because it matters.”

The study was funded by a Natural Sciences and Engineering Research Council of Canada grant and by the British Columbia Women’s Foundation. Dr. Galea and Hachinski had no relevant disclosures.

A version of this article first appeared on Medscape.com.

A large percentage of studies in neurology and psychiatry over the past decade have failed to account for differences between the sexes, according to a team of Canadian researchers.

In a survey of more than 3,000 papers published in six neuroscience and psychiatry journals from 2009 to 2019, researchers found that only 5% analyzed sex as a variable.

“Despite the fact there are papers that are using males and females in the studies, they’re not using the males and females in the way that would optimally find the possibility of sex differences,” lead author Liisa A.M. Galea, PhD, told this news organization. Dr. Galea is a professor and distinguished scholar at the Djavad Mowafaghian Center for Brain Health at the University of British Columbia in Vancouver.

The study was published online in Nature Communications.
 

Optimal design uncommon

Differences in how neurologic and psychiatric diseases affect men and women have been well documented. Women, for example, are more susceptible to severe stroke, and men are more prone to cognitive decline with schizophrenia. With Alzheimer’s disease, women typically have more severe cognitive defects.

The researchers surveyed 3,193 papers that included a multitude of studies. Although most of the papers reported studies that included both sexes, only 19% of surveyed studies used what Dr. Galea called an optimal design for the discovery of sex differences. “What I mean by ‘optimally’ is the design of the experiments and the analysis of sex as a variable,” she said. And in 2019, only 5% of the studies used sex as a variable for determining differences between the sexes, the study found.

In the current research, two authors read the methods and results of each study described in each paper, Dr. Galea said. The readers noted whether the paper reported the study sample size and whether the studies used a balanced design. The surveyed journals include Nature Neuroscience, Neuron, Journal of Neuroscience, Molecular Psychiatry, Biological Psychiatry, and Neuropsychopharmacology.
 

‘Not much is changing’

“I had a suspicion that this was happening,” Dr. Galea said. “I didn’t know that it’s so bad, to be fair.” The “good news story,” she said, is that more papers considered sex as a factor in the later years surveyed. In 2019, more than 95% of papers across both disciplines reported participants’ sex, compared with about 70% in 2009. However, less than 20% of the papers in all study years reported studies that used sex optimally to determine differences between the sexes.

“The other thing that shocked me,” Dr. Galea said, “was that even despite the fact that we saw this increase in the number of papers that were using males and females, we didn’t see the sort of corresponding increase in those that were using ‘optimal design’ or ‘optimal analysis,’ ” Dr. Galea said. In 2009, 14% of papers used optimal design and 2% used optimal analysis for determining sex differences. By 2019, those percentages were 19% and 5%, respectively.

But even the papers that used both sexes had shortcomings, the study found. Just over one-third of these papers (34.5%) didn’t use a balanced design. Just over one-quarter (25.9%) didn’t identify the sample size, a shortcoming that marked 18% of these studies in 2009 and 33% in 2019. Fifteen percent of papers examined included studies that used both sexes inconsistently.

“That matters, because other studies have found that about 20% of papers are doing some kind of analysis with sex, but we had a suspicion that a lot of studies would include sex as a covariate,” Dr. Galea said. “Essentially what that does is, you remove that variable from the data. So, any statistical variation due to sex is then gone.

“The problem with that,” she added, “is you’re not actually looking to see if there’s an influence of sex; you’re removing it.”

Dr. Galea noted that this study points to a need for funding agencies to demand that researchers meet their mandates on sex- and gender-based analysis. “Despite the mandates, not much is really changing as far as the analysis or design of experiments, and we need to figure out how to change that,” she said. “We need to figure out how to get researchers more interested to use the power of studying sex differences.”
 

‘Not surprising, but disappointing’

Vladimir Hachinski, MD, professor of neurology and epidemiology at Western University in London, Ont., and former editor in chief of Stroke, told this news organization that women have almost twice the life risk of developing dementia, are at higher risk of stroke below age 35 years, and have more severe strokes and higher rates of disability at any age.

Commenting on the current study, Dr. Hachinski said, “It’s not surprising, but it’s disappointing, because we’ve known the difference for a long time.” He added, “The paper is very important because we were not aware that it was that bad.”

Dr. Hachinski also stated, “This paper needs a lot of reading. It’s a great resource, and it should be highlighted as one of those things that needs to be addressed, because it matters.”

The study was funded by a Natural Sciences and Engineering Research Council of Canada grant and by the British Columbia Women’s Foundation. Dr. Galea and Hachinski had no relevant disclosures.

A version of this article first appeared on Medscape.com.

Different psychotropic medications are associated with different risks of COVID-19 in hospitalized patients with serious mental illness, a new study suggests.

Investigators found that second-generation antipsychotics were associated with a 48% lower risk of COVID-19, while valproic acid was associated with a 39% increased risk of the disease.

“Exposures to several psychotropic medications were associated with risk of COVID-19 infection among inpatients with serious mental illness; decreased risk was observed with the use of second generation antipsychotics, with paliperidone use associated with the largest effect size. Valproic acid use was associated with an increased risk of infection,” the investigators, led by Katlyn Nemani, MD, at NYU Langone Medical Center, New York, write.

NYU Grossman School of Medicine

Vulnerable population

Patients with serious mental illness are particularly vulnerable to COVID-19. Several psychotropic medications have been identified as potential therapeutic agents to prevent or treat COVID-19, but they have not been systematically studied in this patient population.

The researchers analyzed data from 1,958 adults who were continuously hospitalized with serious mental illness from March 8 to July 1, 2020. The mean age was 51.4 years, and 1,442 (74%) were men.

A total of 969 patients (49.5%) had laboratory-confirmed COVID-19 while hospitalized, and 38 (3.9%) died – a mortality rate four times higher than estimates from the general population in New York during the same time frame, the researchers note.

“This finding is consistent with prior studies that have found increased rates of infection in congregate settings and increased mortality after infection among patients with serious mental illness,” the investigators write.

The use of second-generation antipsychotic medications, as a class, was associated with a lower likelihood of COVID-19 (odds ratio, 0.62; 95% confidence interval, 0.45-0.86), while the use of mood stabilizers was associated with increased likelihood of infection (OR, 1.23; 95% CI, 1.03-1.47).

In a multivariable model of individual medications, use of the long-acting atypical antipsychotic paliperidone was associated with a lower odds of infection (OR, 0.59; 95% CI, 0.41-0.84), and use of valproic acid was associated with increased odds of infection (OR, 1.39; 95% CI, 1.10-1.76).

Valproic acid downregulates angiotensin-converting enzyme 2 in endothelial cells, which may impair immune function and contribute to poor outcomes for patients with COVID-19, the researchers say.

The use of clozapine was associated with reduced odds of COVID-related death (unadjusted OR, 0.25; 95% CI, 0.10-0.62; fully adjusted OR, 0.43; 95% CI, 0.17-1.12).

“Although there have been concerns about clozapine use during the pandemic as a risk factor for pneumonia and potential toxic effects during acute infection, clozapine use was not associated with an increased risk of COVID-19 infection or death in the present study. In fact, unadjusted estimates suggested a significant protective association,” the investigators write.

However, they note, data on clozapine and COVID-19 have been mixed.

Two prior studies of health record data showed an increased risk of COVID-19 associated with clozapine treatment, while a study that was limited to inpatients found a lower risk of infection and a lower risk of symptomatic disease in association with clozapine use.

The researchers also found a lower mortality risk in patients taking antidepressants; there were no COVID-related deaths among patients taking escitalopram, venlafaxine, bupropion, or fluvoxamine.

Although the association was not statistically significant, this observation is in line with larger studies that showed reduced risk of adverse outcomes associated with antidepressant use, the researchers note.
 

A matter of debate

In an accompanying commentary, Benedetta Vai, PhD, and Mario Gennaro Mazza, MD, with IRCCS San Raffaele Scientific Institute, Milan, point out that the link between psychopharmacologic compounds, in particular antipsychotics, and severe COVID-19 outcomes remains “a matter of debate, with inconsistent findings between studies.”

They note further research is needed to determine whether the protective role of second-generation antipsychotics on risk of COVID-19 is mediated by an immune effect or by the direct antiviral properties of these molecules.

The study had no specific funding. Dr. Nemani, Dr. Vai, and Dr. Mazza have disclosed no relevant financial relationships.

A version of this article first appeared on Medscape.com.

Different psychotropic medications are associated with different risks of COVID-19 in hospitalized patients with serious mental illness, a new study suggests.

Investigators found that second-generation antipsychotics were associated with a 48% lower risk of COVID-19, while valproic acid was associated with a 39% increased risk of the disease.

“Exposures to several psychotropic medications were associated with risk of COVID-19 infection among inpatients with serious mental illness; decreased risk was observed with the use of second generation antipsychotics, with paliperidone use associated with the largest effect size. Valproic acid use was associated with an increased risk of infection,” the investigators, led by Katlyn Nemani, MD, at NYU Langone Medical Center, New York, write.

NYU Grossman School of Medicine

Vulnerable population

Patients with serious mental illness are particularly vulnerable to COVID-19. Several psychotropic medications have been identified as potential therapeutic agents to prevent or treat COVID-19, but they have not been systematically studied in this patient population.

The researchers analyzed data from 1,958 adults who were continuously hospitalized with serious mental illness from March 8 to July 1, 2020. The mean age was 51.4 years, and 1,442 (74%) were men.

A total of 969 patients (49.5%) had laboratory-confirmed COVID-19 while hospitalized, and 38 (3.9%) died – a mortality rate four times higher than estimates from the general population in New York during the same time frame, the researchers note.

“This finding is consistent with prior studies that have found increased rates of infection in congregate settings and increased mortality after infection among patients with serious mental illness,” the investigators write.

The use of second-generation antipsychotic medications, as a class, was associated with a lower likelihood of COVID-19 (odds ratio, 0.62; 95% confidence interval, 0.45-0.86), while the use of mood stabilizers was associated with increased likelihood of infection (OR, 1.23; 95% CI, 1.03-1.47).

In a multivariable model of individual medications, use of the long-acting atypical antipsychotic paliperidone was associated with a lower odds of infection (OR, 0.59; 95% CI, 0.41-0.84), and use of valproic acid was associated with increased odds of infection (OR, 1.39; 95% CI, 1.10-1.76).

Valproic acid downregulates angiotensin-converting enzyme 2 in endothelial cells, which may impair immune function and contribute to poor outcomes for patients with COVID-19, the researchers say.

The use of clozapine was associated with reduced odds of COVID-related death (unadjusted OR, 0.25; 95% CI, 0.10-0.62; fully adjusted OR, 0.43; 95% CI, 0.17-1.12).

“Although there have been concerns about clozapine use during the pandemic as a risk factor for pneumonia and potential toxic effects during acute infection, clozapine use was not associated with an increased risk of COVID-19 infection or death in the present study. In fact, unadjusted estimates suggested a significant protective association,” the investigators write.

However, they note, data on clozapine and COVID-19 have been mixed.

Two prior studies of health record data showed an increased risk of COVID-19 associated with clozapine treatment, while a study that was limited to inpatients found a lower risk of infection and a lower risk of symptomatic disease in association with clozapine use.

The researchers also found a lower mortality risk in patients taking antidepressants; there were no COVID-related deaths among patients taking escitalopram, venlafaxine, bupropion, or fluvoxamine.

Although the association was not statistically significant, this observation is in line with larger studies that showed reduced risk of adverse outcomes associated with antidepressant use, the researchers note.
 

A matter of debate

In an accompanying commentary, Benedetta Vai, PhD, and Mario Gennaro Mazza, MD, with IRCCS San Raffaele Scientific Institute, Milan, point out that the link between psychopharmacologic compounds, in particular antipsychotics, and severe COVID-19 outcomes remains “a matter of debate, with inconsistent findings between studies.”

They note further research is needed to determine whether the protective role of second-generation antipsychotics on risk of COVID-19 is mediated by an immune effect or by the direct antiviral properties of these molecules.

The study had no specific funding. Dr. Nemani, Dr. Vai, and Dr. Mazza have disclosed no relevant financial relationships.

A version of this article first appeared on Medscape.com.

Different psychotropic medications are associated with different risks of COVID-19 in hospitalized patients with serious mental illness, a new study suggests.

Investigators found that second-generation antipsychotics were associated with a 48% lower risk of COVID-19, while valproic acid was associated with a 39% increased risk of the disease.

“Exposures to several psychotropic medications were associated with risk of COVID-19 infection among inpatients with serious mental illness; decreased risk was observed with the use of second generation antipsychotics, with paliperidone use associated with the largest effect size. Valproic acid use was associated with an increased risk of infection,” the investigators, led by Katlyn Nemani, MD, at NYU Langone Medical Center, New York, write.

NYU Grossman School of Medicine

Vulnerable population

Patients with serious mental illness are particularly vulnerable to COVID-19. Several psychotropic medications have been identified as potential therapeutic agents to prevent or treat COVID-19, but they have not been systematically studied in this patient population.

The researchers analyzed data from 1,958 adults who were continuously hospitalized with serious mental illness from March 8 to July 1, 2020. The mean age was 51.4 years, and 1,442 (74%) were men.

A total of 969 patients (49.5%) had laboratory-confirmed COVID-19 while hospitalized, and 38 (3.9%) died – a mortality rate four times higher than estimates from the general population in New York during the same time frame, the researchers note.

“This finding is consistent with prior studies that have found increased rates of infection in congregate settings and increased mortality after infection among patients with serious mental illness,” the investigators write.

The use of second-generation antipsychotic medications, as a class, was associated with a lower likelihood of COVID-19 (odds ratio, 0.62; 95% confidence interval, 0.45-0.86), while the use of mood stabilizers was associated with increased likelihood of infection (OR, 1.23; 95% CI, 1.03-1.47).

In a multivariable model of individual medications, use of the long-acting atypical antipsychotic paliperidone was associated with a lower odds of infection (OR, 0.59; 95% CI, 0.41-0.84), and use of valproic acid was associated with increased odds of infection (OR, 1.39; 95% CI, 1.10-1.76).

Valproic acid downregulates angiotensin-converting enzyme 2 in endothelial cells, which may impair immune function and contribute to poor outcomes for patients with COVID-19, the researchers say.

The use of clozapine was associated with reduced odds of COVID-related death (unadjusted OR, 0.25; 95% CI, 0.10-0.62; fully adjusted OR, 0.43; 95% CI, 0.17-1.12).

“Although there have been concerns about clozapine use during the pandemic as a risk factor for pneumonia and potential toxic effects during acute infection, clozapine use was not associated with an increased risk of COVID-19 infection or death in the present study. In fact, unadjusted estimates suggested a significant protective association,” the investigators write.

However, they note, data on clozapine and COVID-19 have been mixed.

Two prior studies of health record data showed an increased risk of COVID-19 associated with clozapine treatment, while a study that was limited to inpatients found a lower risk of infection and a lower risk of symptomatic disease in association with clozapine use.

The researchers also found a lower mortality risk in patients taking antidepressants; there were no COVID-related deaths among patients taking escitalopram, venlafaxine, bupropion, or fluvoxamine.

Although the association was not statistically significant, this observation is in line with larger studies that showed reduced risk of adverse outcomes associated with antidepressant use, the researchers note.
 

A matter of debate

In an accompanying commentary, Benedetta Vai, PhD, and Mario Gennaro Mazza, MD, with IRCCS San Raffaele Scientific Institute, Milan, point out that the link between psychopharmacologic compounds, in particular antipsychotics, and severe COVID-19 outcomes remains “a matter of debate, with inconsistent findings between studies.”

They note further research is needed to determine whether the protective role of second-generation antipsychotics on risk of COVID-19 is mediated by an immune effect or by the direct antiviral properties of these molecules.

The study had no specific funding. Dr. Nemani, Dr. Vai, and Dr. Mazza have disclosed no relevant financial relationships.

A version of this article first appeared on Medscape.com.

Losing weight for TikTok: Taco Bell edition

There are many reasons why a person would want to lose weight. Too numerous to list. Losing weight to improve your health, however, doesn’t bring in a few hundred thousand TikTok subscribers. Losing weight to convince Taco Bell to bring back an obscure menu item, on the other hand ...

Chris Sandberg, a 37-year-old man from San Francisco, has struggled with his weight for years, losing and gaining hundreds of pounds in an endless cycle of feast and famine. In an unrelated development, at the start of the pandemic he also started making videos on TikTok. As the pandemic wore on, he realized that his excess weight put him at increased risk for severe COVID, as well as other chronic diseases, and he resolved to lose weight. He decided to turn his weight-loss journey into a TikTok challenge but, as we said, losing weight for its own sake isn’t enough for the almighty algorithm. He needed a different goal, preferably something offbeat and a little silly.

Matt Prince/Taco Bell

Back in 2013, Taco Bell introduced the Grilled Stuft Nacho, “a flour tortilla, shaped like a nacho, stuffed with beef, cheesy jalapeño sauce, sour cream and crunchy red strips,” according to its website. Mr. Sandberg discovered the item in 2015 and instantly fell in love, purchasing one every day for a week. After that first week, however, he discovered, to his horror, that the Grilled Stuft Nacho had been discontinued.

That loss haunted him for years, until inspiration struck in 2021. He pledged to work out every day on TikTok until Taco Bell brought back the Grilled Stuft Nacho. A bit incongruous, exercising for notoriously unhealthy fast food, but that’s kind of the point. He began the challenge on Jan. 4, 2021, and has continued it every day since, nearly 500 days. Over that time, he’s lost 87 pounds (from 275 at the start to under 190) and currently has 450,000 TikTok subscribers.

A year into the challenge, a local Taco Bell made Mr. Sandberg his beloved Grilled Stuft Nacho, but since the challenge was to exercise until Taco Bell brings the item back to all its restaurants, not just for him, the great journey continues. And we admire him for it. In fact, he’s inspired us: We will write a LOTME every week until it receives a Pulitzer Prize. This is important journalism we do here. Don’t deny it!
 

Episode XIX: COVID strikes back

So what’s next for COVID? Is Disney going to turn it into a series? Can it support a spin-off? Did James Cameron really buy the movie rights? Can it compete against the NFL in the all-important 18-34 demographic? When are Star Wars characters going to get involved?

Adli Wahid/Pixabay

COVID’s motivations and negotiations are pretty much a mystery to us, but we can answer that last question. They already are involved. Well, one of them anyway.

The Chinese government has been enforcing a COVID lockdown in Shanghai for over a month now, but authorities had started letting people out of their homes for short periods of time. A recent push to bring down transmission, however, has made residents increasingly frustrated and argumentative, according to Reuters.

A now-unavailable video, which Reuters could not verify, surfaced on Chinese social media showing police in hazmat suits arguing with people who were being told that they were going to be quarantined because a neighbor had tested positive.

That’s when the Force kicks in, and this next bit comes directly from the Reuters report: “This is so that we can thoroughly remove any positive cases,” one of the officers is heard saying. “Stop asking me why, there is no why.”

There is no why? Does that remind you of someone? Someone short and green, with an odd syntax? That’s right. Clearly, Yoda it is. Yoda is alive and working for the Chinese government in Shanghai. You read it here first.
 

Your coffee may be guilty of sexual discrimination

How do you take your coffee? Espresso, drip, instant, or brewed from a regular old coffee machine? Well, a recent study published in Open Heart suggests that gender and brewing method can alter your coffee’s effect on cholesterol levels.

Art_rich/Getty Images

Besides caffeine, coffee beans have naturally occurring chemicals such as diterpenes, cafestol, and kahweol that raise cholesterol levels in the blood. And then there are the various brewing methods, which are going to release different amounts of chemicals from the beans. According to Consumer Reports, an ounce of espresso has 63 mg of caffeine and an ounce of regular coffee has 12-16 mg. That’s a bit deceiving, though, since no one ever drinks an ounce of regular coffee, so figure 96-128 mg of caffeine for an 8-ounce cup. That’s enough to make anyone’s heart race.

Data from 21,083 participants in the seventh survey of the Tromsø Study who were aged 40 and older showed that women drank a mean of 3.8 cups per day while men drank 4.9 cups. Drinking six or more cups of plunger-brewed coffee was associated with increased cholesterol in both genders, but drinking three to five cups of espresso was significantly associated with high cholesterol in men only. Having six or more cups of filtered coffee daily raised cholesterol in women, but instant coffee increased cholesterol levels in both genders, regardless of how many cups they drank.

People all over the planet drink coffee, some of us like our lives depend on it. Since “coffee is the most frequently consumed central stimulant worldwide,” the investigators said, “even small health effects can have considerable health consequences.”

We’ll drink to that.
 

Have you ever dreamed of having a clone?

When will science grace us with the ability to clone ourselves? It sounds like a dream come true. Our clones can do the stuff that we don’t want to do, like sit in on that 3-hour meeting or do our grocery shopping – really just all the boring stuff we don’t want to do.

Ria Sopala/Pixabay

In 1996, when a sheep named Dolly became the first mammal cloned successfully, people thought it was the start of an amazing cloning era, but, alas, we haven’t made it to cloning humans yet, as LiveScience discovered when it took a look at the subject.

The idea of cloning was quite exciting for science, as people looked forward to eradicating genetic diseases and birth defects. Research done in 1999, however, countered those hopes by suggesting that cloning might increase birth defects.

So why do you think we haven’t advanced to truly cloning humans? Ethics? Time and effort? Technological barriers? “Human cloning is a particularly dramatic action, and was one of the topics that helped launch American bioethics,” Hank Greely, professor of law and genetics at Stanford (Calif.) University, told LiveScience.

What if the clones turned evil and were bent on destroying the world?

We might imagine a clone of ourselves being completely identical to us in our thoughts, actions, and physical looks. However, that’s not necessarily true; a clone would be its own person even if it looks exactly like you.

So what do the professionals think? Is it worth giving human cloning a shot? Are there benefits? Mr. Greely said that “there are none that we should be willing to consider.”

The dream of having a clone to help your son with his math homework may have gone down the drain, but maybe it’s best not to open doors that could lead to drastic changes in our world.

Losing weight for TikTok: Taco Bell edition

There are many reasons why a person would want to lose weight. Too numerous to list. Losing weight to improve your health, however, doesn’t bring in a few hundred thousand TikTok subscribers. Losing weight to convince Taco Bell to bring back an obscure menu item, on the other hand ...

Chris Sandberg, a 37-year-old man from San Francisco, has struggled with his weight for years, losing and gaining hundreds of pounds in an endless cycle of feast and famine. In an unrelated development, at the start of the pandemic he also started making videos on TikTok. As the pandemic wore on, he realized that his excess weight put him at increased risk for severe COVID, as well as other chronic diseases, and he resolved to lose weight. He decided to turn his weight-loss journey into a TikTok challenge but, as we said, losing weight for its own sake isn’t enough for the almighty algorithm. He needed a different goal, preferably something offbeat and a little silly.

Matt Prince/Taco Bell

Back in 2013, Taco Bell introduced the Grilled Stuft Nacho, “a flour tortilla, shaped like a nacho, stuffed with beef, cheesy jalapeño sauce, sour cream and crunchy red strips,” according to its website. Mr. Sandberg discovered the item in 2015 and instantly fell in love, purchasing one every day for a week. After that first week, however, he discovered, to his horror, that the Grilled Stuft Nacho had been discontinued.

That loss haunted him for years, until inspiration struck in 2021. He pledged to work out every day on TikTok until Taco Bell brought back the Grilled Stuft Nacho. A bit incongruous, exercising for notoriously unhealthy fast food, but that’s kind of the point. He began the challenge on Jan. 4, 2021, and has continued it every day since, nearly 500 days. Over that time, he’s lost 87 pounds (from 275 at the start to under 190) and currently has 450,000 TikTok subscribers.

A year into the challenge, a local Taco Bell made Mr. Sandberg his beloved Grilled Stuft Nacho, but since the challenge was to exercise until Taco Bell brings the item back to all its restaurants, not just for him, the great journey continues. And we admire him for it. In fact, he’s inspired us: We will write a LOTME every week until it receives a Pulitzer Prize. This is important journalism we do here. Don’t deny it!
 

Episode XIX: COVID strikes back

So what’s next for COVID? Is Disney going to turn it into a series? Can it support a spin-off? Did James Cameron really buy the movie rights? Can it compete against the NFL in the all-important 18-34 demographic? When are Star Wars characters going to get involved?

Adli Wahid/Pixabay

COVID’s motivations and negotiations are pretty much a mystery to us, but we can answer that last question. They already are involved. Well, one of them anyway.

The Chinese government has been enforcing a COVID lockdown in Shanghai for over a month now, but authorities had started letting people out of their homes for short periods of time. A recent push to bring down transmission, however, has made residents increasingly frustrated and argumentative, according to Reuters.

A now-unavailable video, which Reuters could not verify, surfaced on Chinese social media showing police in hazmat suits arguing with people who were being told that they were going to be quarantined because a neighbor had tested positive.

That’s when the Force kicks in, and this next bit comes directly from the Reuters report: “This is so that we can thoroughly remove any positive cases,” one of the officers is heard saying. “Stop asking me why, there is no why.”

There is no why? Does that remind you of someone? Someone short and green, with an odd syntax? That’s right. Clearly, Yoda it is. Yoda is alive and working for the Chinese government in Shanghai. You read it here first.
 

Your coffee may be guilty of sexual discrimination

How do you take your coffee? Espresso, drip, instant, or brewed from a regular old coffee machine? Well, a recent study published in Open Heart suggests that gender and brewing method can alter your coffee’s effect on cholesterol levels.

Art_rich/Getty Images

Besides caffeine, coffee beans have naturally occurring chemicals such as diterpenes, cafestol, and kahweol that raise cholesterol levels in the blood. And then there are the various brewing methods, which are going to release different amounts of chemicals from the beans. According to Consumer Reports, an ounce of espresso has 63 mg of caffeine and an ounce of regular coffee has 12-16 mg. That’s a bit deceiving, though, since no one ever drinks an ounce of regular coffee, so figure 96-128 mg of caffeine for an 8-ounce cup. That’s enough to make anyone’s heart race.

Data from 21,083 participants in the seventh survey of the Tromsø Study who were aged 40 and older showed that women drank a mean of 3.8 cups per day while men drank 4.9 cups. Drinking six or more cups of plunger-brewed coffee was associated with increased cholesterol in both genders, but drinking three to five cups of espresso was significantly associated with high cholesterol in men only. Having six or more cups of filtered coffee daily raised cholesterol in women, but instant coffee increased cholesterol levels in both genders, regardless of how many cups they drank.

People all over the planet drink coffee, some of us like our lives depend on it. Since “coffee is the most frequently consumed central stimulant worldwide,” the investigators said, “even small health effects can have considerable health consequences.”

We’ll drink to that.
 

Have you ever dreamed of having a clone?

When will science grace us with the ability to clone ourselves? It sounds like a dream come true. Our clones can do the stuff that we don’t want to do, like sit in on that 3-hour meeting or do our grocery shopping – really just all the boring stuff we don’t want to do.

Ria Sopala/Pixabay

In 1996, when a sheep named Dolly became the first mammal cloned successfully, people thought it was the start of an amazing cloning era, but, alas, we haven’t made it to cloning humans yet, as LiveScience discovered when it took a look at the subject.

The idea of cloning was quite exciting for science, as people looked forward to eradicating genetic diseases and birth defects. Research done in 1999, however, countered those hopes by suggesting that cloning might increase birth defects.

So why do you think we haven’t advanced to truly cloning humans? Ethics? Time and effort? Technological barriers? “Human cloning is a particularly dramatic action, and was one of the topics that helped launch American bioethics,” Hank Greely, professor of law and genetics at Stanford (Calif.) University, told LiveScience.

What if the clones turned evil and were bent on destroying the world?

We might imagine a clone of ourselves being completely identical to us in our thoughts, actions, and physical looks. However, that’s not necessarily true; a clone would be its own person even if it looks exactly like you.

So what do the professionals think? Is it worth giving human cloning a shot? Are there benefits? Mr. Greely said that “there are none that we should be willing to consider.”

The dream of having a clone to help your son with his math homework may have gone down the drain, but maybe it’s best not to open doors that could lead to drastic changes in our world.

Losing weight for TikTok: Taco Bell edition

There are many reasons why a person would want to lose weight. Too numerous to list. Losing weight to improve your health, however, doesn’t bring in a few hundred thousand TikTok subscribers. Losing weight to convince Taco Bell to bring back an obscure menu item, on the other hand ...

Chris Sandberg, a 37-year-old man from San Francisco, has struggled with his weight for years, losing and gaining hundreds of pounds in an endless cycle of feast and famine. In an unrelated development, at the start of the pandemic he also started making videos on TikTok. As the pandemic wore on, he realized that his excess weight put him at increased risk for severe COVID, as well as other chronic diseases, and he resolved to lose weight. He decided to turn his weight-loss journey into a TikTok challenge but, as we said, losing weight for its own sake isn’t enough for the almighty algorithm. He needed a different goal, preferably something offbeat and a little silly.

Matt Prince/Taco Bell

Back in 2013, Taco Bell introduced the Grilled Stuft Nacho, “a flour tortilla, shaped like a nacho, stuffed with beef, cheesy jalapeño sauce, sour cream and crunchy red strips,” according to its website. Mr. Sandberg discovered the item in 2015 and instantly fell in love, purchasing one every day for a week. After that first week, however, he discovered, to his horror, that the Grilled Stuft Nacho had been discontinued.

That loss haunted him for years, until inspiration struck in 2021. He pledged to work out every day on TikTok until Taco Bell brought back the Grilled Stuft Nacho. A bit incongruous, exercising for notoriously unhealthy fast food, but that’s kind of the point. He began the challenge on Jan. 4, 2021, and has continued it every day since, nearly 500 days. Over that time, he’s lost 87 pounds (from 275 at the start to under 190) and currently has 450,000 TikTok subscribers.

A year into the challenge, a local Taco Bell made Mr. Sandberg his beloved Grilled Stuft Nacho, but since the challenge was to exercise until Taco Bell brings the item back to all its restaurants, not just for him, the great journey continues. And we admire him for it. In fact, he’s inspired us: We will write a LOTME every week until it receives a Pulitzer Prize. This is important journalism we do here. Don’t deny it!
 

Episode XIX: COVID strikes back

So what’s next for COVID? Is Disney going to turn it into a series? Can it support a spin-off? Did James Cameron really buy the movie rights? Can it compete against the NFL in the all-important 18-34 demographic? When are Star Wars characters going to get involved?

Adli Wahid/Pixabay

COVID’s motivations and negotiations are pretty much a mystery to us, but we can answer that last question. They already are involved. Well, one of them anyway.

The Chinese government has been enforcing a COVID lockdown in Shanghai for over a month now, but authorities had started letting people out of their homes for short periods of time. A recent push to bring down transmission, however, has made residents increasingly frustrated and argumentative, according to Reuters.

A now-unavailable video, which Reuters could not verify, surfaced on Chinese social media showing police in hazmat suits arguing with people who were being told that they were going to be quarantined because a neighbor had tested positive.

That’s when the Force kicks in, and this next bit comes directly from the Reuters report: “This is so that we can thoroughly remove any positive cases,” one of the officers is heard saying. “Stop asking me why, there is no why.”

There is no why? Does that remind you of someone? Someone short and green, with an odd syntax? That’s right. Clearly, Yoda it is. Yoda is alive and working for the Chinese government in Shanghai. You read it here first.
 

Your coffee may be guilty of sexual discrimination

How do you take your coffee? Espresso, drip, instant, or brewed from a regular old coffee machine? Well, a recent study published in Open Heart suggests that gender and brewing method can alter your coffee’s effect on cholesterol levels.

Art_rich/Getty Images

Besides caffeine, coffee beans have naturally occurring chemicals such as diterpenes, cafestol, and kahweol that raise cholesterol levels in the blood. And then there are the various brewing methods, which are going to release different amounts of chemicals from the beans. According to Consumer Reports, an ounce of espresso has 63 mg of caffeine and an ounce of regular coffee has 12-16 mg. That’s a bit deceiving, though, since no one ever drinks an ounce of regular coffee, so figure 96-128 mg of caffeine for an 8-ounce cup. That’s enough to make anyone’s heart race.

Data from 21,083 participants in the seventh survey of the Tromsø Study who were aged 40 and older showed that women drank a mean of 3.8 cups per day while men drank 4.9 cups. Drinking six or more cups of plunger-brewed coffee was associated with increased cholesterol in both genders, but drinking three to five cups of espresso was significantly associated with high cholesterol in men only. Having six or more cups of filtered coffee daily raised cholesterol in women, but instant coffee increased cholesterol levels in both genders, regardless of how many cups they drank.

People all over the planet drink coffee, some of us like our lives depend on it. Since “coffee is the most frequently consumed central stimulant worldwide,” the investigators said, “even small health effects can have considerable health consequences.”

We’ll drink to that.
 

Have you ever dreamed of having a clone?

When will science grace us with the ability to clone ourselves? It sounds like a dream come true. Our clones can do the stuff that we don’t want to do, like sit in on that 3-hour meeting or do our grocery shopping – really just all the boring stuff we don’t want to do.

Ria Sopala/Pixabay

In 1996, when a sheep named Dolly became the first mammal cloned successfully, people thought it was the start of an amazing cloning era, but, alas, we haven’t made it to cloning humans yet, as LiveScience discovered when it took a look at the subject.

The idea of cloning was quite exciting for science, as people looked forward to eradicating genetic diseases and birth defects. Research done in 1999, however, countered those hopes by suggesting that cloning might increase birth defects.

So why do you think we haven’t advanced to truly cloning humans? Ethics? Time and effort? Technological barriers? “Human cloning is a particularly dramatic action, and was one of the topics that helped launch American bioethics,” Hank Greely, professor of law and genetics at Stanford (Calif.) University, told LiveScience.

What if the clones turned evil and were bent on destroying the world?

We might imagine a clone of ourselves being completely identical to us in our thoughts, actions, and physical looks. However, that’s not necessarily true; a clone would be its own person even if it looks exactly like you.

So what do the professionals think? Is it worth giving human cloning a shot? Are there benefits? Mr. Greely said that “there are none that we should be willing to consider.”

The dream of having a clone to help your son with his math homework may have gone down the drain, but maybe it’s best not to open doors that could lead to drastic changes in our world.

Recently the National Clinical Care Commission provided recommendations to Congress for improving federal diabetes programs in a report. This commission was put together after Congress passed the National Clinical Care Commission Act in 2017.

The report provides a wide range of recommendations that look to combat and prevent diabetes at many levels. An exciting aspect of the recommendations is that they consider how all agencies, including those that are not specifically health care, can fight diabetes. As primary care physicians are increasingly looking at all aspects of our patients’ lives to improve their health, these recommendations provide support for the work on which we are currently embarking.

The report acknowledges that many recent advances in diabetes treatments have made huge differences for clinicians and patients alike. Unfortunately, they have not been translated quickly into practice and when they have been, there have been disparities in the rollouts.

The document also states that many other factors, including housing, health care access, and food access, greatly affect the prevention and control of diabetes, according to a paper published in Annals of Internal Medicine. These factors have led to significant disparities in the population impacted by diabetes.

The topic areas of the recommendations include federal programs and policies; population-level programs to prevent diabetes, facilitate treatments, and promote health equity; type 2 diabetes prevention; insurance coverage; diabetes care delivery; and diabetes research.

Supporting recommendations in clinics

Family physicians, internists, and pediatricians can directly support many of the recommendations in their clinics. For those recommendations that are not directed at primary care clinics specifically, physicians should provide advocacy for their implementation.

If implemented, some of these recommendations will allow primary care physicians to improve at providing treatments to their patients for diabetes prevention and treatment of the disease. For example, the recommendations call for requirements of insurance companies to cover screening for prediabetes with the use of hemoglobin A1c and the participation in Centers for Disease Control and Prevention–recognized diabetes prevention programs.

The recommendations also call for the requirement of high-value diabetes services and treatment to be covered predeductible by insurers. If more consistently covered by insurers, it would be easier for us to implement these opportunities including educational groups in our practices. Additionally, if they were available predeductible, we could recommend these to our patients with less worry about cost.

Within care delivery recommendations, they also highlight the importance of an adequate and sustainable team to enhance care for patients with diabetes. Many of us know that it takes more than just the medications, but also significant counseling on diet, exercise and other lifestyle aspects – which need to be tailored to each patient for both prevention and treatment of diabetes.

The recommendations also call for the education and treatment modalities to be able to be provided and covered via virtual methods, while potentially increasing physicians’ ability to provide and patients’ ability to access. Ensuring both the workforce is available and that insurance provides coverage would make these programs accessible to so many more physician offices and ultimately patients.
 

Importance of social factors

As stated earlier, one of the great aspects of this report is its acknowledgment of the importance of social factors on the prevention and treatment of diabetes.

The report recommends expanding housing opportunities for low-income individuals as individuals cannot focus on their health when worried about housing. It also recommends increasing assistance with programs focused on food security. Primary care physicians should advocate for the adoption of these and other recommendations, because of the potentially meaningful impact these changes could have.

Ensuring adequate housing and access to healthy food would go a long way in the prevention and treatment of diabetes. If there are increases in these resources, team members within primary care physician offices would be wonderful allies to help direct patients to these resources. As these concerns may be top of mind for some patients, linking patients to these resources in the physician’s office may reinforce for patients that physicians understand our patients’ biggest concerns.

Ultimately, if the sweeping recommendations in this report are adopted and enforced, it could mean significant improvements for many patients at risk for and living with diabetes. They would provide payment for these resources making them more accessible for patients and physicians alike.

Dr. Wheat is a family physician at Erie Family Health Center and program director of Northwestern University’s McGaw Family Medicine residency program, both in Chicago. Dr. Wheat serves on the editorial advisory board of Family Practice News. You can contact her at [email protected].

Recently the National Clinical Care Commission provided recommendations to Congress for improving federal diabetes programs in a report. This commission was put together after Congress passed the National Clinical Care Commission Act in 2017.

The report provides a wide range of recommendations that look to combat and prevent diabetes at many levels. An exciting aspect of the recommendations is that they consider how all agencies, including those that are not specifically health care, can fight diabetes. As primary care physicians are increasingly looking at all aspects of our patients’ lives to improve their health, these recommendations provide support for the work on which we are currently embarking.

The report acknowledges that many recent advances in diabetes treatments have made huge differences for clinicians and patients alike. Unfortunately, they have not been translated quickly into practice and when they have been, there have been disparities in the rollouts.

The document also states that many other factors, including housing, health care access, and food access, greatly affect the prevention and control of diabetes, according to a paper published in Annals of Internal Medicine. These factors have led to significant disparities in the population impacted by diabetes.

The topic areas of the recommendations include federal programs and policies; population-level programs to prevent diabetes, facilitate treatments, and promote health equity; type 2 diabetes prevention; insurance coverage; diabetes care delivery; and diabetes research.

Supporting recommendations in clinics

Family physicians, internists, and pediatricians can directly support many of the recommendations in their clinics. For those recommendations that are not directed at primary care clinics specifically, physicians should provide advocacy for their implementation.

If implemented, some of these recommendations will allow primary care physicians to improve at providing treatments to their patients for diabetes prevention and treatment of the disease. For example, the recommendations call for requirements of insurance companies to cover screening for prediabetes with the use of hemoglobin A1c and the participation in Centers for Disease Control and Prevention–recognized diabetes prevention programs.

The recommendations also call for the requirement of high-value diabetes services and treatment to be covered predeductible by insurers. If more consistently covered by insurers, it would be easier for us to implement these opportunities including educational groups in our practices. Additionally, if they were available predeductible, we could recommend these to our patients with less worry about cost.

Within care delivery recommendations, they also highlight the importance of an adequate and sustainable team to enhance care for patients with diabetes. Many of us know that it takes more than just the medications, but also significant counseling on diet, exercise and other lifestyle aspects – which need to be tailored to each patient for both prevention and treatment of diabetes.

The recommendations also call for the education and treatment modalities to be able to be provided and covered via virtual methods, while potentially increasing physicians’ ability to provide and patients’ ability to access. Ensuring both the workforce is available and that insurance provides coverage would make these programs accessible to so many more physician offices and ultimately patients.
 

Importance of social factors

As stated earlier, one of the great aspects of this report is its acknowledgment of the importance of social factors on the prevention and treatment of diabetes.

The report recommends expanding housing opportunities for low-income individuals as individuals cannot focus on their health when worried about housing. It also recommends increasing assistance with programs focused on food security. Primary care physicians should advocate for the adoption of these and other recommendations, because of the potentially meaningful impact these changes could have.

Ensuring adequate housing and access to healthy food would go a long way in the prevention and treatment of diabetes. If there are increases in these resources, team members within primary care physician offices would be wonderful allies to help direct patients to these resources. As these concerns may be top of mind for some patients, linking patients to these resources in the physician’s office may reinforce for patients that physicians understand our patients’ biggest concerns.

Ultimately, if the sweeping recommendations in this report are adopted and enforced, it could mean significant improvements for many patients at risk for and living with diabetes. They would provide payment for these resources making them more accessible for patients and physicians alike.

Dr. Wheat is a family physician at Erie Family Health Center and program director of Northwestern University’s McGaw Family Medicine residency program, both in Chicago. Dr. Wheat serves on the editorial advisory board of Family Practice News. You can contact her at [email protected].

Recently the National Clinical Care Commission provided recommendations to Congress for improving federal diabetes programs in a report. This commission was put together after Congress passed the National Clinical Care Commission Act in 2017.

The report provides a wide range of recommendations that look to combat and prevent diabetes at many levels. An exciting aspect of the recommendations is that they consider how all agencies, including those that are not specifically health care, can fight diabetes. As primary care physicians are increasingly looking at all aspects of our patients’ lives to improve their health, these recommendations provide support for the work on which we are currently embarking.

The report acknowledges that many recent advances in diabetes treatments have made huge differences for clinicians and patients alike. Unfortunately, they have not been translated quickly into practice and when they have been, there have been disparities in the rollouts.

The document also states that many other factors, including housing, health care access, and food access, greatly affect the prevention and control of diabetes, according to a paper published in Annals of Internal Medicine. These factors have led to significant disparities in the population impacted by diabetes.

The topic areas of the recommendations include federal programs and policies; population-level programs to prevent diabetes, facilitate treatments, and promote health equity; type 2 diabetes prevention; insurance coverage; diabetes care delivery; and diabetes research.

Supporting recommendations in clinics

Family physicians, internists, and pediatricians can directly support many of the recommendations in their clinics. For those recommendations that are not directed at primary care clinics specifically, physicians should provide advocacy for their implementation.

If implemented, some of these recommendations will allow primary care physicians to improve at providing treatments to their patients for diabetes prevention and treatment of the disease. For example, the recommendations call for requirements of insurance companies to cover screening for prediabetes with the use of hemoglobin A1c and the participation in Centers for Disease Control and Prevention–recognized diabetes prevention programs.

The recommendations also call for the requirement of high-value diabetes services and treatment to be covered predeductible by insurers. If more consistently covered by insurers, it would be easier for us to implement these opportunities including educational groups in our practices. Additionally, if they were available predeductible, we could recommend these to our patients with less worry about cost.

Within care delivery recommendations, they also highlight the importance of an adequate and sustainable team to enhance care for patients with diabetes. Many of us know that it takes more than just the medications, but also significant counseling on diet, exercise and other lifestyle aspects – which need to be tailored to each patient for both prevention and treatment of diabetes.

The recommendations also call for the education and treatment modalities to be able to be provided and covered via virtual methods, while potentially increasing physicians’ ability to provide and patients’ ability to access. Ensuring both the workforce is available and that insurance provides coverage would make these programs accessible to so many more physician offices and ultimately patients.
 

Importance of social factors

As stated earlier, one of the great aspects of this report is its acknowledgment of the importance of social factors on the prevention and treatment of diabetes.

The report recommends expanding housing opportunities for low-income individuals as individuals cannot focus on their health when worried about housing. It also recommends increasing assistance with programs focused on food security. Primary care physicians should advocate for the adoption of these and other recommendations, because of the potentially meaningful impact these changes could have.

Ensuring adequate housing and access to healthy food would go a long way in the prevention and treatment of diabetes. If there are increases in these resources, team members within primary care physician offices would be wonderful allies to help direct patients to these resources. As these concerns may be top of mind for some patients, linking patients to these resources in the physician’s office may reinforce for patients that physicians understand our patients’ biggest concerns.

Ultimately, if the sweeping recommendations in this report are adopted and enforced, it could mean significant improvements for many patients at risk for and living with diabetes. They would provide payment for these resources making them more accessible for patients and physicians alike.

Dr. Wheat is a family physician at Erie Family Health Center and program director of Northwestern University’s McGaw Family Medicine residency program, both in Chicago. Dr. Wheat serves on the editorial advisory board of Family Practice News. You can contact her at [email protected].

A 4-mm punch biopsy of the annular border confirmed a diagnosis of localized granuloma annulare (GA).

There is a long list of differential diagnoses for annular patches and plaques; it includes tinea corporis and important systemic diseases such as sarcoidosis and Lyme disease. Clinical features of GA include annular, minimally scaly patches to plaques with central clearing on extensor surfaces in children and adults. Sometimes GA is much more widespread. Often, the diagnosis can be made clinically, but a punch biopsy of the deep dermis will confirm the diagnosis by showing palisading or interstitial granulomatous inflammation, necrobiotic collagen, and often mucin.

GA is a common inflammatory disorder with an uncertain etiology. Localized GA affects children and adults and is often self limiting. It may, however, last for months or years before resolving. Disseminated disease is much more recalcitrant with few good treatment options if topical steroids or phototherapy fails. Treatment for localized disease is much more successful with topical or intralesional steroids.

Trauma can cause a localized plaque to resolve; a lesion may resolve soon after a biopsy is performed. Possible related conditions include diabetes, thyroid disease, hepatitis C, and hyperlipidemia; but there is no consensus on focused screening. Similarly, associations or nonassociations with malignancy in adults have been cited, but evidence is lacking.¹

In this case, the patient and his family were reassured that the diagnosis wasn’t serious. In a single visit, he received a series of 6 to 7 injections of 10 mg/mL triamcinolone which led to resolution of the lesion in 4 weeks.

‌

Text courtesy of Jonathan Karnes, MD, medical director, MDFMR Dermatology Services, Augusta, ME. Photos courtesy of Jonathan Karnes, MD (copyright retained).

A 4-mm punch biopsy of the annular border confirmed a diagnosis of localized granuloma annulare (GA).

There is a long list of differential diagnoses for annular patches and plaques; it includes tinea corporis and important systemic diseases such as sarcoidosis and Lyme disease. Clinical features of GA include annular, minimally scaly patches to plaques with central clearing on extensor surfaces in children and adults. Sometimes GA is much more widespread. Often, the diagnosis can be made clinically, but a punch biopsy of the deep dermis will confirm the diagnosis by showing palisading or interstitial granulomatous inflammation, necrobiotic collagen, and often mucin.

GA is a common inflammatory disorder with an uncertain etiology. Localized GA affects children and adults and is often self limiting. It may, however, last for months or years before resolving. Disseminated disease is much more recalcitrant with few good treatment options if topical steroids or phototherapy fails. Treatment for localized disease is much more successful with topical or intralesional steroids.

Trauma can cause a localized plaque to resolve; a lesion may resolve soon after a biopsy is performed. Possible related conditions include diabetes, thyroid disease, hepatitis C, and hyperlipidemia; but there is no consensus on focused screening. Similarly, associations or nonassociations with malignancy in adults have been cited, but evidence is lacking.¹

In this case, the patient and his family were reassured that the diagnosis wasn’t serious. In a single visit, he received a series of 6 to 7 injections of 10 mg/mL triamcinolone which led to resolution of the lesion in 4 weeks.

‌

Text courtesy of Jonathan Karnes, MD, medical director, MDFMR Dermatology Services, Augusta, ME. Photos courtesy of Jonathan Karnes, MD (copyright retained).

A 4-mm punch biopsy of the annular border confirmed a diagnosis of localized granuloma annulare (GA).

There is a long list of differential diagnoses for annular patches and plaques; it includes tinea corporis and important systemic diseases such as sarcoidosis and Lyme disease. Clinical features of GA include annular, minimally scaly patches to plaques with central clearing on extensor surfaces in children and adults. Sometimes GA is much more widespread. Often, the diagnosis can be made clinically, but a punch biopsy of the deep dermis will confirm the diagnosis by showing palisading or interstitial granulomatous inflammation, necrobiotic collagen, and often mucin.

GA is a common inflammatory disorder with an uncertain etiology. Localized GA affects children and adults and is often self limiting. It may, however, last for months or years before resolving. Disseminated disease is much more recalcitrant with few good treatment options if topical steroids or phototherapy fails. Treatment for localized disease is much more successful with topical or intralesional steroids.

Trauma can cause a localized plaque to resolve; a lesion may resolve soon after a biopsy is performed. Possible related conditions include diabetes, thyroid disease, hepatitis C, and hyperlipidemia; but there is no consensus on focused screening. Similarly, associations or nonassociations with malignancy in adults have been cited, but evidence is lacking.¹

In this case, the patient and his family were reassured that the diagnosis wasn’t serious. In a single visit, he received a series of 6 to 7 injections of 10 mg/mL triamcinolone which led to resolution of the lesion in 4 weeks.

‌

Text courtesy of Jonathan Karnes, MD, medical director, MDFMR Dermatology Services, Augusta, ME. Photos courtesy of Jonathan Karnes, MD (copyright retained).

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.

Narrative Analysis

Riessman described general steps to conduct narrative analysis, including transcription, narrative clean-up, consideration of contextual factors, exploration of thematic threads, consideration of larger social narratives, and positioning.¹² The first author read transcripts while listening to the audio recordings to ensure accuracy. With narrative clean-up each narrative was organized to cocreate overall meaning, changed to protect anonymity, and refined to only include the illness narrative. For example, if a narrator told a story about childhood and then later in the interview remembered another detail to add to their story, narrative clean-up reordered events to make cohesive sense of the story. Demographic, historical, cultural, and social contexts of both the narrator and audience were reflected on during analysis to explore how these components may have shaped and influenced cocreation. Context was also considered within the larger VA setting.

Emergent themes were explored for convergence, divergence, and points of tension within and across each narrative. Larger social narratives were also considered for their influence on possible inclusion/exclusion of experience, such as how gender identity may have influenced study participants’ descriptions of their roles in social systems. These themes and narratives were then shared with our team, and we worked through decision points during the analysis process and discussed interpretation of the data to reach consensus.

Results

Five veterans living with HF were recruited and consented to participate in the study. Demographics of the participants and first author are included in the Table. Five illness narratives were cocreated, entitled: Blame the Cheese: Frank’s Illness Narrative; Love is Love: Bob’s Illness Narrative; The Brighter Things in Life is My Family: George’s Illness Narrative; We Never Know When Our Time is Coming: Bill’s Illness Narrative; and A Dream Deferred: Henry’s Illness Narrative.

Each narrative was explored focusing on the domains of the model of adjustment to illness. An emergent theme was also identified with multiple subthemes: being a veteran is unique. Related subthemes included: financial benefits, intersectionality of government and health care, the intersectionality of masculinity and military service, and the dichotomy of military experience.

The search for meaning creation after the experience of chronic illness emerged across interviews. One example of meaning creation was in Frank's illness narrative. Frank was unsure why he got HF: “Probably because I ate too much cheese…I mean, that’s gotta be it. It can’t be anything else.” By tying HF to his diet, he found meaning through his health behaviors.

Model of Adjustment to Illness

The narratives illustrate components of the model of adjustment to illness and describe how each of the participants either shifted their self-schema and world schema or reinforced their previously established schemas. It also demonstrates how people use narratives to create meaning and illness understanding from their illness experience, reflecting, and emphasizing different parts creating meaning from their experience.

A commonality across the narratives was a shift in self-schema, including the shift from being a provider to being reliant on others. In accordance with the dominant social narrative around men as providers, each narrator talked about their identity as a provider for themselves and their families. Often keeping their provider identity required modifications of the definition, from physical abilities and employment to financial security and stability. George made all his health care decisions based on his goal of providing for his family and protecting them from having to care for him: “I’m always thinking about the future, always trying to figure out how my family, if something should happen to me, how my family would cope, and how my family would be able to support themselves.” Bob’s health care goals were to stay alive long enough for his wife to get financial benefits as a surviving spouse: “That’s why I’m trying to make everything for her, you know. I’m not worried about myself. I’m not. Her I am, you know. And love is love.” Both of their health care decisions are shaped by their identity as a provider shifting to financial support.

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.

Dichotomy of Military Experience

Some narrators in this study talked about their military experience as both traumatic and beneficial. These dichotomous viewpoints can be difficult for veterans to construct a narrative understanding around. How can an inherently painful potentially traumatic experience, such as war, have benefits? This way of looking at the world may require a large narrative shift in their world and self-schemas to accept.

Bob hurt people in Vietnam as part of his job. “I did a lot of killing.” Bob met a village elder who stopped him from hurting people in the village and “in my spare time, I would go back to the village and he would teach me, how to be a better man,” Bob shared. “He taught me about life and everything, and he was awesome, just to this day, he’s like a father to me.” Bob tried to change his life and learned how to live a life full of love and care because of his experience in Vietnam. Though Bob hurt a lot of people in Vietnam, which still haunts him, he found meaning through his life lessons from the village elder. “I’m ashamed of what I did in Vietnam. I did some really bad stuff, but ever since then, I’ve always tried to do good to help people.”

Discussion

Exploring a person’s illness experience from a truly holistic pathway allows HCPs to see how the ripples of illness echo into the interconnection of surrounding systems and even across time. These stories suggest that veterans may experience their illness and construct their illness narratives based on the distinct contextual considerations of veteran culture.¹⁰ Research exploring how veterans see their illness and its potential impact on their health care access and choices could benefit from exploration into narrative understanding and meaning creation as a potentially contributing factor to health care decision making. As veterans are treated across health care systems, this has implications not only for VHA care, but community care as well.

These narratives also demonstrate how veterans create health care goals woven into their narrative understanding of their illness and its cause, lending insight into understanding health care decision making. This change in self-schema shapes how veterans see themselves and their role which shapes other aspects of their health care. These findings also contribute to our understanding of meaning creation. By exploring meaning making and narrative understanding, this work adds to our knowledge of the importance of spirituality as a component of the holistic experience of illness. There have been previous studies exploring the spiritual aspects of HF and the importance of meaning making.^24,25 Exploring meaning making as an aspect of illness narratives can have important implications. Future research could explore the connections between meaning creation and illness narratives.

Limitations

The sample of veterans who participated in this study and are not generalizable to all veteran populations. The sample also only reflects people who were willing to participate and may exclude experience of people who may not have felt comfortable talking to a VA employee about their experience. It is also important to note that the small sample size included primarily male and White participants. In narrative inquiry, the number of participants is not as essential as diving into the depth of the interviews with the participants.

It is also important to note the position of the interviewer. As a White cisgender, heterosexual, middle-aged, middle class female who was raised in rural Kansas in a predominantly Protestant community, the positionality of the interviewer as a cocreator of the data inherently shaped and influenced the narratives created during this study. This contextual understanding of narratives created within the research relationship is an essential component to narrative inquiry and understanding.

Conclusions

Exploring these veterans’ narrative understanding of their experience of illness has many potential implications for health care systems, HCPs, and our military and veteran populations described in this article. Thinking about how the impact of racism, the influence of incentives to remain ill, and the complex intersection of identity and health brings light to how these domains may influence how people see themselves and engage in health care. These domains from these stories of the heart may help millions of people living with chronic illnesses like HF to not only live with their illness but inform how their experience is shaped by the systems surrounding them, including health care, government, and systems of power and oppression.

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.

Narrative Analysis

Riessman described general steps to conduct narrative analysis, including transcription, narrative clean-up, consideration of contextual factors, exploration of thematic threads, consideration of larger social narratives, and positioning.¹² The first author read transcripts while listening to the audio recordings to ensure accuracy. With narrative clean-up each narrative was organized to cocreate overall meaning, changed to protect anonymity, and refined to only include the illness narrative. For example, if a narrator told a story about childhood and then later in the interview remembered another detail to add to their story, narrative clean-up reordered events to make cohesive sense of the story. Demographic, historical, cultural, and social contexts of both the narrator and audience were reflected on during analysis to explore how these components may have shaped and influenced cocreation. Context was also considered within the larger VA setting.

Emergent themes were explored for convergence, divergence, and points of tension within and across each narrative. Larger social narratives were also considered for their influence on possible inclusion/exclusion of experience, such as how gender identity may have influenced study participants’ descriptions of their roles in social systems. These themes and narratives were then shared with our team, and we worked through decision points during the analysis process and discussed interpretation of the data to reach consensus.

Results

Five veterans living with HF were recruited and consented to participate in the study. Demographics of the participants and first author are included in the Table. Five illness narratives were cocreated, entitled: Blame the Cheese: Frank’s Illness Narrative; Love is Love: Bob’s Illness Narrative; The Brighter Things in Life is My Family: George’s Illness Narrative; We Never Know When Our Time is Coming: Bill’s Illness Narrative; and A Dream Deferred: Henry’s Illness Narrative.

Each narrative was explored focusing on the domains of the model of adjustment to illness. An emergent theme was also identified with multiple subthemes: being a veteran is unique. Related subthemes included: financial benefits, intersectionality of government and health care, the intersectionality of masculinity and military service, and the dichotomy of military experience.

The search for meaning creation after the experience of chronic illness emerged across interviews. One example of meaning creation was in Frank's illness narrative. Frank was unsure why he got HF: “Probably because I ate too much cheese…I mean, that’s gotta be it. It can’t be anything else.” By tying HF to his diet, he found meaning through his health behaviors.

Model of Adjustment to Illness

The narratives illustrate components of the model of adjustment to illness and describe how each of the participants either shifted their self-schema and world schema or reinforced their previously established schemas. It also demonstrates how people use narratives to create meaning and illness understanding from their illness experience, reflecting, and emphasizing different parts creating meaning from their experience.

A commonality across the narratives was a shift in self-schema, including the shift from being a provider to being reliant on others. In accordance with the dominant social narrative around men as providers, each narrator talked about their identity as a provider for themselves and their families. Often keeping their provider identity required modifications of the definition, from physical abilities and employment to financial security and stability. George made all his health care decisions based on his goal of providing for his family and protecting them from having to care for him: “I’m always thinking about the future, always trying to figure out how my family, if something should happen to me, how my family would cope, and how my family would be able to support themselves.” Bob’s health care goals were to stay alive long enough for his wife to get financial benefits as a surviving spouse: “That’s why I’m trying to make everything for her, you know. I’m not worried about myself. I’m not. Her I am, you know. And love is love.” Both of their health care decisions are shaped by their identity as a provider shifting to financial support.

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.

Dichotomy of Military Experience

Some narrators in this study talked about their military experience as both traumatic and beneficial. These dichotomous viewpoints can be difficult for veterans to construct a narrative understanding around. How can an inherently painful potentially traumatic experience, such as war, have benefits? This way of looking at the world may require a large narrative shift in their world and self-schemas to accept.

Bob hurt people in Vietnam as part of his job. “I did a lot of killing.” Bob met a village elder who stopped him from hurting people in the village and “in my spare time, I would go back to the village and he would teach me, how to be a better man,” Bob shared. “He taught me about life and everything, and he was awesome, just to this day, he’s like a father to me.” Bob tried to change his life and learned how to live a life full of love and care because of his experience in Vietnam. Though Bob hurt a lot of people in Vietnam, which still haunts him, he found meaning through his life lessons from the village elder. “I’m ashamed of what I did in Vietnam. I did some really bad stuff, but ever since then, I’ve always tried to do good to help people.”

Discussion

Exploring a person’s illness experience from a truly holistic pathway allows HCPs to see how the ripples of illness echo into the interconnection of surrounding systems and even across time. These stories suggest that veterans may experience their illness and construct their illness narratives based on the distinct contextual considerations of veteran culture.¹⁰ Research exploring how veterans see their illness and its potential impact on their health care access and choices could benefit from exploration into narrative understanding and meaning creation as a potentially contributing factor to health care decision making. As veterans are treated across health care systems, this has implications not only for VHA care, but community care as well.

These narratives also demonstrate how veterans create health care goals woven into their narrative understanding of their illness and its cause, lending insight into understanding health care decision making. This change in self-schema shapes how veterans see themselves and their role which shapes other aspects of their health care. These findings also contribute to our understanding of meaning creation. By exploring meaning making and narrative understanding, this work adds to our knowledge of the importance of spirituality as a component of the holistic experience of illness. There have been previous studies exploring the spiritual aspects of HF and the importance of meaning making.^24,25 Exploring meaning making as an aspect of illness narratives can have important implications. Future research could explore the connections between meaning creation and illness narratives.

Limitations

The sample of veterans who participated in this study and are not generalizable to all veteran populations. The sample also only reflects people who were willing to participate and may exclude experience of people who may not have felt comfortable talking to a VA employee about their experience. It is also important to note that the small sample size included primarily male and White participants. In narrative inquiry, the number of participants is not as essential as diving into the depth of the interviews with the participants.

It is also important to note the position of the interviewer. As a White cisgender, heterosexual, middle-aged, middle class female who was raised in rural Kansas in a predominantly Protestant community, the positionality of the interviewer as a cocreator of the data inherently shaped and influenced the narratives created during this study. This contextual understanding of narratives created within the research relationship is an essential component to narrative inquiry and understanding.

Conclusions

Exploring these veterans’ narrative understanding of their experience of illness has many potential implications for health care systems, HCPs, and our military and veteran populations described in this article. Thinking about how the impact of racism, the influence of incentives to remain ill, and the complex intersection of identity and health brings light to how these domains may influence how people see themselves and engage in health care. These domains from these stories of the heart may help millions of people living with chronic illnesses like HF to not only live with their illness but inform how their experience is shaped by the systems surrounding them, including health care, government, and systems of power and oppression.

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.

Narrative Analysis

Riessman described general steps to conduct narrative analysis, including transcription, narrative clean-up, consideration of contextual factors, exploration of thematic threads, consideration of larger social narratives, and positioning.¹² The first author read transcripts while listening to the audio recordings to ensure accuracy. With narrative clean-up each narrative was organized to cocreate overall meaning, changed to protect anonymity, and refined to only include the illness narrative. For example, if a narrator told a story about childhood and then later in the interview remembered another detail to add to their story, narrative clean-up reordered events to make cohesive sense of the story. Demographic, historical, cultural, and social contexts of both the narrator and audience were reflected on during analysis to explore how these components may have shaped and influenced cocreation. Context was also considered within the larger VA setting.

Emergent themes were explored for convergence, divergence, and points of tension within and across each narrative. Larger social narratives were also considered for their influence on possible inclusion/exclusion of experience, such as how gender identity may have influenced study participants’ descriptions of their roles in social systems. These themes and narratives were then shared with our team, and we worked through decision points during the analysis process and discussed interpretation of the data to reach consensus.

Results

Five veterans living with HF were recruited and consented to participate in the study. Demographics of the participants and first author are included in the Table. Five illness narratives were cocreated, entitled: Blame the Cheese: Frank’s Illness Narrative; Love is Love: Bob’s Illness Narrative; The Brighter Things in Life is My Family: George’s Illness Narrative; We Never Know When Our Time is Coming: Bill’s Illness Narrative; and A Dream Deferred: Henry’s Illness Narrative.

Each narrative was explored focusing on the domains of the model of adjustment to illness. An emergent theme was also identified with multiple subthemes: being a veteran is unique. Related subthemes included: financial benefits, intersectionality of government and health care, the intersectionality of masculinity and military service, and the dichotomy of military experience.

The search for meaning creation after the experience of chronic illness emerged across interviews. One example of meaning creation was in Frank's illness narrative. Frank was unsure why he got HF: “Probably because I ate too much cheese…I mean, that’s gotta be it. It can’t be anything else.” By tying HF to his diet, he found meaning through his health behaviors.

Model of Adjustment to Illness

The narratives illustrate components of the model of adjustment to illness and describe how each of the participants either shifted their self-schema and world schema or reinforced their previously established schemas. It also demonstrates how people use narratives to create meaning and illness understanding from their illness experience, reflecting, and emphasizing different parts creating meaning from their experience.

A commonality across the narratives was a shift in self-schema, including the shift from being a provider to being reliant on others. In accordance with the dominant social narrative around men as providers, each narrator talked about their identity as a provider for themselves and their families. Often keeping their provider identity required modifications of the definition, from physical abilities and employment to financial security and stability. George made all his health care decisions based on his goal of providing for his family and protecting them from having to care for him: “I’m always thinking about the future, always trying to figure out how my family, if something should happen to me, how my family would cope, and how my family would be able to support themselves.” Bob’s health care goals were to stay alive long enough for his wife to get financial benefits as a surviving spouse: “That’s why I’m trying to make everything for her, you know. I’m not worried about myself. I’m not. Her I am, you know. And love is love.” Both of their health care decisions are shaped by their identity as a provider shifting to financial support.

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.

Dichotomy of Military Experience

Some narrators in this study talked about their military experience as both traumatic and beneficial. These dichotomous viewpoints can be difficult for veterans to construct a narrative understanding around. How can an inherently painful potentially traumatic experience, such as war, have benefits? This way of looking at the world may require a large narrative shift in their world and self-schemas to accept.

Bob hurt people in Vietnam as part of his job. “I did a lot of killing.” Bob met a village elder who stopped him from hurting people in the village and “in my spare time, I would go back to the village and he would teach me, how to be a better man,” Bob shared. “He taught me about life and everything, and he was awesome, just to this day, he’s like a father to me.” Bob tried to change his life and learned how to live a life full of love and care because of his experience in Vietnam. Though Bob hurt a lot of people in Vietnam, which still haunts him, he found meaning through his life lessons from the village elder. “I’m ashamed of what I did in Vietnam. I did some really bad stuff, but ever since then, I’ve always tried to do good to help people.”

Discussion

Exploring a person’s illness experience from a truly holistic pathway allows HCPs to see how the ripples of illness echo into the interconnection of surrounding systems and even across time. These stories suggest that veterans may experience their illness and construct their illness narratives based on the distinct contextual considerations of veteran culture.¹⁰ Research exploring how veterans see their illness and its potential impact on their health care access and choices could benefit from exploration into narrative understanding and meaning creation as a potentially contributing factor to health care decision making. As veterans are treated across health care systems, this has implications not only for VHA care, but community care as well.

These narratives also demonstrate how veterans create health care goals woven into their narrative understanding of their illness and its cause, lending insight into understanding health care decision making. This change in self-schema shapes how veterans see themselves and their role which shapes other aspects of their health care. These findings also contribute to our understanding of meaning creation. By exploring meaning making and narrative understanding, this work adds to our knowledge of the importance of spirituality as a component of the holistic experience of illness. There have been previous studies exploring the spiritual aspects of HF and the importance of meaning making.^24,25 Exploring meaning making as an aspect of illness narratives can have important implications. Future research could explore the connections between meaning creation and illness narratives.

Limitations

The sample of veterans who participated in this study and are not generalizable to all veteran populations. The sample also only reflects people who were willing to participate and may exclude experience of people who may not have felt comfortable talking to a VA employee about their experience. It is also important to note that the small sample size included primarily male and White participants. In narrative inquiry, the number of participants is not as essential as diving into the depth of the interviews with the participants.

It is also important to note the position of the interviewer. As a White cisgender, heterosexual, middle-aged, middle class female who was raised in rural Kansas in a predominantly Protestant community, the positionality of the interviewer as a cocreator of the data inherently shaped and influenced the narratives created during this study. This contextual understanding of narratives created within the research relationship is an essential component to narrative inquiry and understanding.

Conclusions

Exploring these veterans’ narrative understanding of their experience of illness has many potential implications for health care systems, HCPs, and our military and veteran populations described in this article. Thinking about how the impact of racism, the influence of incentives to remain ill, and the complex intersection of identity and health brings light to how these domains may influence how people see themselves and engage in health care. These domains from these stories of the heart may help millions of people living with chronic illnesses like HF to not only live with their illness but inform how their experience is shaped by the systems surrounding them, including health care, government, and systems of power and oppression.

Appendiceal mucinous neoplasms (AMNs) are rare tumors of the appendix that can be asymptomatic or present with acute right lower quadrant (RLQ) pain mimicking appendicitis. Due to their potential to cause either no symptoms or nonspecific symptoms, such as abdominal pain, nausea, or vomiting, AMNs are often found incidentally during appendectomies or, even more rarely, colonoscopies. Most AMNs grow slowly and have little metastatic potential. However, due to potential complications, such as bowel obstruction and rupture, timely detection and removal of AMN is essential. We describe the case of a patient who appeared to have acute appendicitis complicated by rupture on imaging who was found instead to have a perforated low-grade AMN during surgery.

Case Presentation

A male patient aged 72 years with a history of type 2 diabetes mellitus, hypertension, and aortic stenosis, but no prior abdominal surgery, presented with a chief concern of generalized weakness. As part of the workup for his weakness, a computed tomography (CT) scan of the abdomen was performed which showed an RLQ phlegmon and mild fat stranding in the area. Imaging also revealed an asymptomatic gallstone measuring 1.5 cm with no evidence of cholecystitis. The patient had no fever and reported no abdominal pain, nausea, vomiting, or change in bowel habits. On physical examination, the patient’s abdomen was soft, nontender, and nondistended with normoactive bowel sounds and no rebound or guarding.

To manage the appendicitis, the patient started a 2-week course of amoxicillin clavulanate 875 mg twice daily and was instructed to schedule an interval appendectomy in the coming months. Four days later, during a follow-up with his primary care physician, he was found to be asymptomatic. However, at this visit his stool was found to be positive for occult blood. Given this finding and the lack of a previous colonoscopy, the patient underwent a colonoscopy, which revealed bulging at the appendiceal orifice, consistent with an inverted appendix. Portions of the appendix were biopsied (Figure 1). Histologic analysis of the appendiceal biopsies revealed no dysplasia or malignancy. The colonoscopy also revealed an 8-mm sessile polyp in the ascending colon which was resected, and histologic analysis of this polyp revealed a low-grade tubular adenoma. Additionally, a large angiodysplastic lesion was found in the ascending colon as well as external and medium-sized internal hemorrhoids.

Histologic specimens of the appendix were notable for evidence of perforation and neoplasia leading to a diagnosis of low-grade AMN. The presence of atypical mucinous epithelial cells on the serosal surface of the appendix, confirmed with a positive pancytokeratin stain, provided histologic evidence of appendiceal perforation (Figure 3). The presence of nuclear atypia demonstrated that the appendix was involved by a neoplastic process. Additionally, attenuation of the normal appendiceal epithelium, evidence of a chronic process, further helped to differentiate the AMN from complicated appendicitis. The presence of mucin involving the serosa of the appendix led to the classification of this patient’s neoplasm as grade pT4a. Of note, histologic examination demonstrated that the surgical margins contained tumor cells.

Discussion

AMNs are rare tumors with an annual age-adjusted incidence of approximately 0.12 per 1,000,000 people.¹ These neoplasms can present as acute or chronic abdominal pain, gastrointestinal bleeding, intestinal obstruction, or acute abdomen.^2-4 Most AMNs, however, are asymptomatic and are usually found incidentally during appendectomies for appendicitis, and can even be found during colonoscopies,such as in this case.^5,6

Low-grade AMNs are distinguished from appendiceal mucinous adenocarcinomas by their lack of wall invasion.⁷ Additionally, low-grade AMNs have a very good prognosis as even neoplasms that have spread outside of the appendix have a 5-year overall survival rate of 79 to 86%.⁸ These low-grade neoplasms also have extremely low rates of recurrence after resection.⁹ In contrast, appendiceal mucinous adenocarcinomas have a much worse prognosis with a 5-year overall survival rate of 53.6%.¹⁰

Conclusions

AMNs can present with nonspecific symptoms or can be completely asymptomatic and are often found incidentally during colonoscopies or appendectomies for acute appendicitis. While it is true that AMNs have low metastatic potential and grow slowly, AMNs can rupture leading to pseudomyxoma peritonei or even cause bowel obstruction warranting timely identification and removal of these neoplasms. Laparoscopic evaluation in cases of ruptured appendices is critical not only for treatment, but also for determining the presence of a potential underlying appendiceal malignancy. Although AMNs are a rare pathology, physicians should still consider the possibility of these neoplasms even when imaging findings suggest appendicitis. Having AMNs as part of the differential diagnosis is especially necessary in cases, such as this one, in which the patient has appendiceal inversion, is aged > 50 years, and has concurrent colorectal neoplasms.

Appendiceal mucinous neoplasms (AMNs) are rare tumors of the appendix that can be asymptomatic or present with acute right lower quadrant (RLQ) pain mimicking appendicitis. Due to their potential to cause either no symptoms or nonspecific symptoms, such as abdominal pain, nausea, or vomiting, AMNs are often found incidentally during appendectomies or, even more rarely, colonoscopies. Most AMNs grow slowly and have little metastatic potential. However, due to potential complications, such as bowel obstruction and rupture, timely detection and removal of AMN is essential. We describe the case of a patient who appeared to have acute appendicitis complicated by rupture on imaging who was found instead to have a perforated low-grade AMN during surgery.

Case Presentation

A male patient aged 72 years with a history of type 2 diabetes mellitus, hypertension, and aortic stenosis, but no prior abdominal surgery, presented with a chief concern of generalized weakness. As part of the workup for his weakness, a computed tomography (CT) scan of the abdomen was performed which showed an RLQ phlegmon and mild fat stranding in the area. Imaging also revealed an asymptomatic gallstone measuring 1.5 cm with no evidence of cholecystitis. The patient had no fever and reported no abdominal pain, nausea, vomiting, or change in bowel habits. On physical examination, the patient’s abdomen was soft, nontender, and nondistended with normoactive bowel sounds and no rebound or guarding.

To manage the appendicitis, the patient started a 2-week course of amoxicillin clavulanate 875 mg twice daily and was instructed to schedule an interval appendectomy in the coming months. Four days later, during a follow-up with his primary care physician, he was found to be asymptomatic. However, at this visit his stool was found to be positive for occult blood. Given this finding and the lack of a previous colonoscopy, the patient underwent a colonoscopy, which revealed bulging at the appendiceal orifice, consistent with an inverted appendix. Portions of the appendix were biopsied (Figure 1). Histologic analysis of the appendiceal biopsies revealed no dysplasia or malignancy. The colonoscopy also revealed an 8-mm sessile polyp in the ascending colon which was resected, and histologic analysis of this polyp revealed a low-grade tubular adenoma. Additionally, a large angiodysplastic lesion was found in the ascending colon as well as external and medium-sized internal hemorrhoids.

Histologic specimens of the appendix were notable for evidence of perforation and neoplasia leading to a diagnosis of low-grade AMN. The presence of atypical mucinous epithelial cells on the serosal surface of the appendix, confirmed with a positive pancytokeratin stain, provided histologic evidence of appendiceal perforation (Figure 3). The presence of nuclear atypia demonstrated that the appendix was involved by a neoplastic process. Additionally, attenuation of the normal appendiceal epithelium, evidence of a chronic process, further helped to differentiate the AMN from complicated appendicitis. The presence of mucin involving the serosa of the appendix led to the classification of this patient’s neoplasm as grade pT4a. Of note, histologic examination demonstrated that the surgical margins contained tumor cells.

Discussion

AMNs are rare tumors with an annual age-adjusted incidence of approximately 0.12 per 1,000,000 people.¹ These neoplasms can present as acute or chronic abdominal pain, gastrointestinal bleeding, intestinal obstruction, or acute abdomen.^2-4 Most AMNs, however, are asymptomatic and are usually found incidentally during appendectomies for appendicitis, and can even be found during colonoscopies,such as in this case.^5,6

Low-grade AMNs are distinguished from appendiceal mucinous adenocarcinomas by their lack of wall invasion.⁷ Additionally, low-grade AMNs have a very good prognosis as even neoplasms that have spread outside of the appendix have a 5-year overall survival rate of 79 to 86%.⁸ These low-grade neoplasms also have extremely low rates of recurrence after resection.⁹ In contrast, appendiceal mucinous adenocarcinomas have a much worse prognosis with a 5-year overall survival rate of 53.6%.¹⁰

Conclusions

AMNs can present with nonspecific symptoms or can be completely asymptomatic and are often found incidentally during colonoscopies or appendectomies for acute appendicitis. While it is true that AMNs have low metastatic potential and grow slowly, AMNs can rupture leading to pseudomyxoma peritonei or even cause bowel obstruction warranting timely identification and removal of these neoplasms. Laparoscopic evaluation in cases of ruptured appendices is critical not only for treatment, but also for determining the presence of a potential underlying appendiceal malignancy. Although AMNs are a rare pathology, physicians should still consider the possibility of these neoplasms even when imaging findings suggest appendicitis. Having AMNs as part of the differential diagnosis is especially necessary in cases, such as this one, in which the patient has appendiceal inversion, is aged > 50 years, and has concurrent colorectal neoplasms.

Appendiceal mucinous neoplasms (AMNs) are rare tumors of the appendix that can be asymptomatic or present with acute right lower quadrant (RLQ) pain mimicking appendicitis. Due to their potential to cause either no symptoms or nonspecific symptoms, such as abdominal pain, nausea, or vomiting, AMNs are often found incidentally during appendectomies or, even more rarely, colonoscopies. Most AMNs grow slowly and have little metastatic potential. However, due to potential complications, such as bowel obstruction and rupture, timely detection and removal of AMN is essential. We describe the case of a patient who appeared to have acute appendicitis complicated by rupture on imaging who was found instead to have a perforated low-grade AMN during surgery.

Case Presentation

A male patient aged 72 years with a history of type 2 diabetes mellitus, hypertension, and aortic stenosis, but no prior abdominal surgery, presented with a chief concern of generalized weakness. As part of the workup for his weakness, a computed tomography (CT) scan of the abdomen was performed which showed an RLQ phlegmon and mild fat stranding in the area. Imaging also revealed an asymptomatic gallstone measuring 1.5 cm with no evidence of cholecystitis. The patient had no fever and reported no abdominal pain, nausea, vomiting, or change in bowel habits. On physical examination, the patient’s abdomen was soft, nontender, and nondistended with normoactive bowel sounds and no rebound or guarding.

To manage the appendicitis, the patient started a 2-week course of amoxicillin clavulanate 875 mg twice daily and was instructed to schedule an interval appendectomy in the coming months. Four days later, during a follow-up with his primary care physician, he was found to be asymptomatic. However, at this visit his stool was found to be positive for occult blood. Given this finding and the lack of a previous colonoscopy, the patient underwent a colonoscopy, which revealed bulging at the appendiceal orifice, consistent with an inverted appendix. Portions of the appendix were biopsied (Figure 1). Histologic analysis of the appendiceal biopsies revealed no dysplasia or malignancy. The colonoscopy also revealed an 8-mm sessile polyp in the ascending colon which was resected, and histologic analysis of this polyp revealed a low-grade tubular adenoma. Additionally, a large angiodysplastic lesion was found in the ascending colon as well as external and medium-sized internal hemorrhoids.

Histologic specimens of the appendix were notable for evidence of perforation and neoplasia leading to a diagnosis of low-grade AMN. The presence of atypical mucinous epithelial cells on the serosal surface of the appendix, confirmed with a positive pancytokeratin stain, provided histologic evidence of appendiceal perforation (Figure 3). The presence of nuclear atypia demonstrated that the appendix was involved by a neoplastic process. Additionally, attenuation of the normal appendiceal epithelium, evidence of a chronic process, further helped to differentiate the AMN from complicated appendicitis. The presence of mucin involving the serosa of the appendix led to the classification of this patient’s neoplasm as grade pT4a. Of note, histologic examination demonstrated that the surgical margins contained tumor cells.

Discussion

AMNs are rare tumors with an annual age-adjusted incidence of approximately 0.12 per 1,000,000 people.¹ These neoplasms can present as acute or chronic abdominal pain, gastrointestinal bleeding, intestinal obstruction, or acute abdomen.^2-4 Most AMNs, however, are asymptomatic and are usually found incidentally during appendectomies for appendicitis, and can even be found during colonoscopies,such as in this case.^5,6

Low-grade AMNs are distinguished from appendiceal mucinous adenocarcinomas by their lack of wall invasion.⁷ Additionally, low-grade AMNs have a very good prognosis as even neoplasms that have spread outside of the appendix have a 5-year overall survival rate of 79 to 86%.⁸ These low-grade neoplasms also have extremely low rates of recurrence after resection.⁹ In contrast, appendiceal mucinous adenocarcinomas have a much worse prognosis with a 5-year overall survival rate of 53.6%.¹⁰

Conclusions

AMNs can present with nonspecific symptoms or can be completely asymptomatic and are often found incidentally during colonoscopies or appendectomies for acute appendicitis. While it is true that AMNs have low metastatic potential and grow slowly, AMNs can rupture leading to pseudomyxoma peritonei or even cause bowel obstruction warranting timely identification and removal of these neoplasms. Laparoscopic evaluation in cases of ruptured appendices is critical not only for treatment, but also for determining the presence of a potential underlying appendiceal malignancy. Although AMNs are a rare pathology, physicians should still consider the possibility of these neoplasms even when imaging findings suggest appendicitis. Having AMNs as part of the differential diagnosis is especially necessary in cases, such as this one, in which the patient has appendiceal inversion, is aged > 50 years, and has concurrent colorectal neoplasms.

Caregiving for a person with dementia in the community can be extremely difficult work. Much of this work falls on unpaid or informal caregivers. Sixty-three percent of older adults with dementia depend completely on unpaid caregivers, and an additional 26% receive some combination of paid and unpaid support, together comprising nearly 90% of the more than 3 million older Americans with dementia.¹ In-home care is preferable for these patients. For veterans, the Caregiver Support Program (CSP) is the only US Department of Veterans Affairs (VA) program that exclusively supports caregivers. Although the CSP is not a nursing home diversion or cost savings program, successfully enabling at-home living in lieu of facility living also has the potential to reduce overall cost of care, and most importantly, to enable veterans who desire it to age at home.^2,3

The CSP has 2 unique programs for caregivers of eligible veterans. The Program of General Caregiver Support Services (PGCSS) provides resources, education, and support to caregivers of all veterans enrolled in the Veterans Health Administration (VHA). The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides education and training, access to health care insurance if eligible, mental health counseling, access to a monthly caregiver stipend, enhanced respite care, wellness contacts, and travel compensation for VA health care appointments (Table 1).^4,5

Patients undergo a rigorous assessment and highly specialized and individualized clinical decision-making process to confirm the service is appropriate for the patient. PCAFC was restructured and expanded on October 1, 2020.⁶ Currently, veterans who incurred or aggravated a serious injury (defined by a single or combined service-connection rating of ≥ 70%) in active military service before May 8, 1975, or after September 10, 2001, are eligible for PCAFC.⁶ Most notably, these changes opened eligibility in the PCAFC to caregivers of veterans from the Vietnam, Korean, and World War II eras of conflict and veterans with dependence in activities of daily living (ADL) due to a wider variety of illnesses, including dementia.⁶ The PCAFC is set to further expand to caregivers of otherwise eligible veterans of all eras of service on October 1, 2022, 2 years after the initial expansion, as laid out in the 2018 VA MISSION Act.⁶ Additional information on the history of the PGCSS and PCAFC and eligibility criteria for veterans and their family caregivers can be found in Tables 2 and 3.

Case Presentation

A male combat veteran presented to his primary care practitioner (PCP) with concerns of several years of progressive changes in gait, forgetfulness, and a gradual decline in the ability to live independently without assistance. At that time, his medical history was notable for PTSD (50% service connection), which had been diagnosed over a decade prior (but for which the veteran had refused medication or therapy on multiple occasions, stating he preferred to “breathe through” his intrusive symptom flare-ups), localized prostate cancer with a radical prostatectomy (100% service connection), multiple kidney stones with persistent left ureteral inflammation, and arteriosclerotic heart disease (10% service connection). A Saint Louis University Mental Status Exam (SLUMS) performed by the PCP was notable for a score of 9/30, in the dementia range. A computed tomography of the brain demonstrated scattered foci of hypoattenuation attributable to normal aging without any other pathology noted.

The veteran was referred to the Cognitive Care clinic, a local longitudinal multidisciplinary dementia care clinic, along with his spouse/caregiver. Cognitive testing was performed by a licensed clinical psychologist in the clinic and was notable for a Mini-Mental State Exam (MMSE) score of 18/30, also in the dementia range, and a more robust neuropsychiatric battery demonstrated borderline intact memory and language function but impairments in executive function and visuospatial skills. The patient’s clinical history included functional loss over time, with total dependence in instrumental activities of daily living (IADL), or tasks necessary to be fully independent or manage a household, including inability to manage finances, and some need for assistance in ADL, or personal care tasks such as dressing or grooming, including bathing. Physical examination was notable for bradykinesia, a shuffling gait, and rare episodes of speaking to someone who was not in the room, thought to be due to mild nondistressing hallucinations.

A diagnosis of LBD was made. At time of diagnosis, the patient met criteria for probable dementia with Lewy bodies, with 2 of 4 core clinical features (hallucinations and Parkinsonism), and multiple supportive features (gait disturbance, sensory disturbance, and altered mood).^10,11 The veteran continued to develop more supportive features for diagnosis of LBD over time, including evidence of autonomic instability.

The veteran and his caregiver were educated on his diagnosis, and longitudinal support was offered. The veteran was no longer driving, and due to the severity of his symptoms, the importance of driving cessation was reinforced by the care team. Over the course of the next year, his illness progressed, with more frequent behaviors and psychological symptoms of dementia (BPSD). He began to exhibit nighttime wandering throughout the house and became more anxious and restless during the day. He lost the ability to make his own health care decisions, and his spouse became his activated health care power of attorney (HCPOA). His BPSD became more disruptive to daily life and was accompanied by a change in the character of his hallucinations, with prior nondistressing visions of other people being replaced with visions of war, burning bodies, and violence, much of it related to combat experiences in Vietnam. The BPSD began to include hiding behind furniture, running out of the house, and shouting and crying in response to hallucinations. At times, his BPSD became violent, lashing out in fear against his hallucinations and caregiver.

The veteran’s change in BPSD was concerning for a new baseline, rather than being clearly related to an underlying unmet physical need, such as pain, hunger, sleep, or discomfort. Multiple hospital admissions during that year involved IV hydration and treatment for urinary tract infections (UTI) for several days of inpatient stay at a time, but these behaviors persisted despite infection treatment and hydration. The patient’s changes in BPSD were thought to be secondary to uncovered and intensified PTSD in the setting of progressive dementia. Due to the clear danger the patient posed to himself and others, potential treatment options for these PTSD-related hallucinations were discussed with his caregiver. The caregiver shared that the patient’s BPSD and hallucinations were so distressing that “he would never want to live like this,” and that things had progressed to the point that “he has no quality of life.”

Oral aripiprazole 2 mg twice daily was prescribed after the risks of infection, cardiac complications, and exacerbation of movement disorder symptoms, such as increased stiffness and falls, were discussed with the caregiver. The caregiver was employed and relied on continued employment for income, but the patient could not be safely left alone. As the patient and his caregiver had reached a crisis point and living at home no longer appeared to be safe, the patient was referred to a VA-contracted skilled nursing facility (SNF) for long-term care. The patient’s caregiver was also referred to CSP for support during this transition. Due to the patient’s level of service connection and personal needs, as well as the patient and caregiver’s preference for the veteran to remain in his home, they were evaluated for the PCAFC for enhanced support to enable home as an alternative to facility living, should the patient respond to the antipsychotic therapy sufficiently, which was evaluated on a regular basis.

After several months, the patient’s BPSD had improved significantly, and he was no longer experiencing distressing hallucinations. However, his mobility also declined, and he became fully dependent in most ADL, including transfers, hygiene, and toileting. Due to the COVID-19 pandemic, visitation was limited, which was difficult for both the patient and his caregiver. The veteran and caregiver were approved for PCAFC due to the veteran’s combination of service-connected illnesses > 70%, dependence for most ADLs, and need for continuous supervision. A transfer home from the SNF was arranged.

The PCAFC allowed the veteran’s caregiver and family members to provide in-home full-time caregiving, as an alternative to facility placement. The caregiver received a variety of support, including access to peer support, instruction on ways to assist in his toileting, hygiene, and transfers, and a caregiving stipend. In addition to offsetting lost wages, the stipend also helped offset the cost of care supplies which were not provided or were not readily available from the VA, which at the time included the patient’s preferred nutritional supplement and some supplies for personal care.

The veteran’s care needs continued to escalate. A fall at home resulted in a hip fracture, which was treated with surgical pinning. Postfracture physical therapy in a facility was considered, but ultimately was provided at home. The patient also experienced multiple UTIs and resulting delirium, with accompanying agitation and hallucinations. These episodes improved with IV antibiotics and hydration during short hospital stays. Ultimately, a computed tomography demonstrated overflow incontinence likely related to urologic damage from prior kidney stones and stent placement was recommended.

Visiting skilled nurses for the patient’s area were difficult to coordinate but were eventually arranged. The patient continued residing in his home with the support of his caregiver, the PCAFC, and the local VA medical center geriatric and transitional care services. The patient was also referred to the palliative care outpatient specialty clinic for discussion of goals of care and assistance with advance care planning as his illness progressed. Mental health and geriatric psychiatry consult teams were considered for this case but not utilized.

Discussion

Older adult Americans are at high risk of poor financial wellbeing, with nearly one quarter of Americans aged > 62 years experiencing financial insecurity.¹² Even in this case with health care provided by the VA, successful in-home care was challenging and required a dedicated live-in caregiver, care coordination resources, and financial support. As part of its mission of caring for veterans, the VA has instituted CSP, whose mission is to promote the health and well-being of family caregivers through education, support, and services.

PCAFC offers enhanced clinical support for caregivers of eligible veterans who are seriously injured. This includes resources, education, support, financial stipends, health insurance (if eligible), and beneficiary travel (if eligible) to primary caregivers of eligible veterans. PCAFC was originally reserved for veterans who had onset of service-related disability after September 11, 2001, with an associated personal care need. In this population, PCAFC demonstrated an increased usage of clinical resources, likely related to increased ease in accessing care.¹³

The cohort of post-9/11 veterans is very different from the cohort of veterans and their caregivers who may now qualify for the PCAFC after its October 2020 expansion. Veterans from the Vietnam, Korean, and World War II eras of conflict have rates of service-connected disability 2 to 3 times higher than those of post-9/11 era veterans and are at greater risk for dementia.⁹ Veterans aged ≥ 75 years who have service connection also report higher rates of difficulty with independent living and self-care compared with their younger peers.⁹ Since dementia and PTSD are common causes of service connection and disability it is likely that a significant proportion of older veterans will be eligible to apply for the newly expanded PCAFC.

To be eligible for PCAFC, a veteran must have a service-connected disability rating of ≥ 70% and must need in-person care services for ≥ 6 continuous months, based on either an inability to perform an ADL, or a need for supervision, protection, or instruction. PGCSS and PCAFC also may improve access to dementia-specific resources and care. These programs jointly improve access to care, clinical and community resources, and support, and serve to further support in-home care with consistent caregivers who have known the veterans for decades as an alternative to SNF care, as they did in this case. Although in-home care with appropriate support has not been found to be clinically superior, it has been found to be noninferior to SNF living for older adults.¹⁴ More familiar environments and caregivers such as those at home may also reduce the risk of long-term adverse outcomes such as delirium and falls, but there is still more research to be done to examine the ultimate clinical impact of aging in place for people with dementia. Most importantly, for many veterans and their family caregivers, living at home is preferable to SNF care, but may prove especially challenging in the context of advanced-stage dementia without CSP support.

It is not clear how CSP use or increased access to PCAFC will impact costs. However, the PCAFC monthly stipend is scaled to the median wage of a home health aide and to the location of the caregiver, which is considerably less than the cost of recurrent hospitalization or a year of facility-level care.¹⁵ The CSP may eventually be a successful long-term investment in cost savings. In order to ensure the process for PCAFC approval is uniform and prompt as the program expands, CSP has restructured, increasing the number of employees, improving the patient review process, and expanding staff training.¹⁶ The VA plans to continually re-assess CSP using the infrastructure of the Caregiver Record Management Application as it continues to expand.¹⁷

Conclusions

Dementia and PTSD commonly coexist and are a significant source of disability in the service-connected veteran population. This case brings attention to the recent expansion of PCAFC, which now has the potential to support eligible veterans from the World War II, Korean, and Vietnam-era conflicts, in whom these illnesses are more common. In this case, in-home care was preferred by the veteran and primary caregiver but would not have been possible without a complex intervention. There is still more research to be done on the best way to meet the needs of older adults with dementia, the impact of in-home care, and the system-wide implications of PCAFC, especially as the program grows. However, in-home care is preferable to SNF living for many veterans and caregivers, and CSP will continue to be an essential element of providing care for this population.

Acknowledgments

This material is the result of work supported with resources and the use of facilities at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. The authors would also like to thank the members of the Veterans Affairs Central Office and National Caregiver Support Program Office, including Elyse Kaplan, Melinda Hogue, Beth Wolfsohn, Colleen Richardson, and Timothy Jobin, for their thorough review of the work and edits to ensure accurate program description.

Caregiving for a person with dementia in the community can be extremely difficult work. Much of this work falls on unpaid or informal caregivers. Sixty-three percent of older adults with dementia depend completely on unpaid caregivers, and an additional 26% receive some combination of paid and unpaid support, together comprising nearly 90% of the more than 3 million older Americans with dementia.¹ In-home care is preferable for these patients. For veterans, the Caregiver Support Program (CSP) is the only US Department of Veterans Affairs (VA) program that exclusively supports caregivers. Although the CSP is not a nursing home diversion or cost savings program, successfully enabling at-home living in lieu of facility living also has the potential to reduce overall cost of care, and most importantly, to enable veterans who desire it to age at home.^2,3

The CSP has 2 unique programs for caregivers of eligible veterans. The Program of General Caregiver Support Services (PGCSS) provides resources, education, and support to caregivers of all veterans enrolled in the Veterans Health Administration (VHA). The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides education and training, access to health care insurance if eligible, mental health counseling, access to a monthly caregiver stipend, enhanced respite care, wellness contacts, and travel compensation for VA health care appointments (Table 1).^4,5

Patients undergo a rigorous assessment and highly specialized and individualized clinical decision-making process to confirm the service is appropriate for the patient. PCAFC was restructured and expanded on October 1, 2020.⁶ Currently, veterans who incurred or aggravated a serious injury (defined by a single or combined service-connection rating of ≥ 70%) in active military service before May 8, 1975, or after September 10, 2001, are eligible for PCAFC.⁶ Most notably, these changes opened eligibility in the PCAFC to caregivers of veterans from the Vietnam, Korean, and World War II eras of conflict and veterans with dependence in activities of daily living (ADL) due to a wider variety of illnesses, including dementia.⁶ The PCAFC is set to further expand to caregivers of otherwise eligible veterans of all eras of service on October 1, 2022, 2 years after the initial expansion, as laid out in the 2018 VA MISSION Act.⁶ Additional information on the history of the PGCSS and PCAFC and eligibility criteria for veterans and their family caregivers can be found in Tables 2 and 3.

Case Presentation

A male combat veteran presented to his primary care practitioner (PCP) with concerns of several years of progressive changes in gait, forgetfulness, and a gradual decline in the ability to live independently without assistance. At that time, his medical history was notable for PTSD (50% service connection), which had been diagnosed over a decade prior (but for which the veteran had refused medication or therapy on multiple occasions, stating he preferred to “breathe through” his intrusive symptom flare-ups), localized prostate cancer with a radical prostatectomy (100% service connection), multiple kidney stones with persistent left ureteral inflammation, and arteriosclerotic heart disease (10% service connection). A Saint Louis University Mental Status Exam (SLUMS) performed by the PCP was notable for a score of 9/30, in the dementia range. A computed tomography of the brain demonstrated scattered foci of hypoattenuation attributable to normal aging without any other pathology noted.

The veteran was referred to the Cognitive Care clinic, a local longitudinal multidisciplinary dementia care clinic, along with his spouse/caregiver. Cognitive testing was performed by a licensed clinical psychologist in the clinic and was notable for a Mini-Mental State Exam (MMSE) score of 18/30, also in the dementia range, and a more robust neuropsychiatric battery demonstrated borderline intact memory and language function but impairments in executive function and visuospatial skills. The patient’s clinical history included functional loss over time, with total dependence in instrumental activities of daily living (IADL), or tasks necessary to be fully independent or manage a household, including inability to manage finances, and some need for assistance in ADL, or personal care tasks such as dressing or grooming, including bathing. Physical examination was notable for bradykinesia, a shuffling gait, and rare episodes of speaking to someone who was not in the room, thought to be due to mild nondistressing hallucinations.

A diagnosis of LBD was made. At time of diagnosis, the patient met criteria for probable dementia with Lewy bodies, with 2 of 4 core clinical features (hallucinations and Parkinsonism), and multiple supportive features (gait disturbance, sensory disturbance, and altered mood).^10,11 The veteran continued to develop more supportive features for diagnosis of LBD over time, including evidence of autonomic instability.

The veteran and his caregiver were educated on his diagnosis, and longitudinal support was offered. The veteran was no longer driving, and due to the severity of his symptoms, the importance of driving cessation was reinforced by the care team. Over the course of the next year, his illness progressed, with more frequent behaviors and psychological symptoms of dementia (BPSD). He began to exhibit nighttime wandering throughout the house and became more anxious and restless during the day. He lost the ability to make his own health care decisions, and his spouse became his activated health care power of attorney (HCPOA). His BPSD became more disruptive to daily life and was accompanied by a change in the character of his hallucinations, with prior nondistressing visions of other people being replaced with visions of war, burning bodies, and violence, much of it related to combat experiences in Vietnam. The BPSD began to include hiding behind furniture, running out of the house, and shouting and crying in response to hallucinations. At times, his BPSD became violent, lashing out in fear against his hallucinations and caregiver.

The veteran’s change in BPSD was concerning for a new baseline, rather than being clearly related to an underlying unmet physical need, such as pain, hunger, sleep, or discomfort. Multiple hospital admissions during that year involved IV hydration and treatment for urinary tract infections (UTI) for several days of inpatient stay at a time, but these behaviors persisted despite infection treatment and hydration. The patient’s changes in BPSD were thought to be secondary to uncovered and intensified PTSD in the setting of progressive dementia. Due to the clear danger the patient posed to himself and others, potential treatment options for these PTSD-related hallucinations were discussed with his caregiver. The caregiver shared that the patient’s BPSD and hallucinations were so distressing that “he would never want to live like this,” and that things had progressed to the point that “he has no quality of life.”

Oral aripiprazole 2 mg twice daily was prescribed after the risks of infection, cardiac complications, and exacerbation of movement disorder symptoms, such as increased stiffness and falls, were discussed with the caregiver. The caregiver was employed and relied on continued employment for income, but the patient could not be safely left alone. As the patient and his caregiver had reached a crisis point and living at home no longer appeared to be safe, the patient was referred to a VA-contracted skilled nursing facility (SNF) for long-term care. The patient’s caregiver was also referred to CSP for support during this transition. Due to the patient’s level of service connection and personal needs, as well as the patient and caregiver’s preference for the veteran to remain in his home, they were evaluated for the PCAFC for enhanced support to enable home as an alternative to facility living, should the patient respond to the antipsychotic therapy sufficiently, which was evaluated on a regular basis.

After several months, the patient’s BPSD had improved significantly, and he was no longer experiencing distressing hallucinations. However, his mobility also declined, and he became fully dependent in most ADL, including transfers, hygiene, and toileting. Due to the COVID-19 pandemic, visitation was limited, which was difficult for both the patient and his caregiver. The veteran and caregiver were approved for PCAFC due to the veteran’s combination of service-connected illnesses > 70%, dependence for most ADLs, and need for continuous supervision. A transfer home from the SNF was arranged.

The PCAFC allowed the veteran’s caregiver and family members to provide in-home full-time caregiving, as an alternative to facility placement. The caregiver received a variety of support, including access to peer support, instruction on ways to assist in his toileting, hygiene, and transfers, and a caregiving stipend. In addition to offsetting lost wages, the stipend also helped offset the cost of care supplies which were not provided or were not readily available from the VA, which at the time included the patient’s preferred nutritional supplement and some supplies for personal care.

The veteran’s care needs continued to escalate. A fall at home resulted in a hip fracture, which was treated with surgical pinning. Postfracture physical therapy in a facility was considered, but ultimately was provided at home. The patient also experienced multiple UTIs and resulting delirium, with accompanying agitation and hallucinations. These episodes improved with IV antibiotics and hydration during short hospital stays. Ultimately, a computed tomography demonstrated overflow incontinence likely related to urologic damage from prior kidney stones and stent placement was recommended.

Visiting skilled nurses for the patient’s area were difficult to coordinate but were eventually arranged. The patient continued residing in his home with the support of his caregiver, the PCAFC, and the local VA medical center geriatric and transitional care services. The patient was also referred to the palliative care outpatient specialty clinic for discussion of goals of care and assistance with advance care planning as his illness progressed. Mental health and geriatric psychiatry consult teams were considered for this case but not utilized.

Discussion

Older adult Americans are at high risk of poor financial wellbeing, with nearly one quarter of Americans aged > 62 years experiencing financial insecurity.¹² Even in this case with health care provided by the VA, successful in-home care was challenging and required a dedicated live-in caregiver, care coordination resources, and financial support. As part of its mission of caring for veterans, the VA has instituted CSP, whose mission is to promote the health and well-being of family caregivers through education, support, and services.

PCAFC offers enhanced clinical support for caregivers of eligible veterans who are seriously injured. This includes resources, education, support, financial stipends, health insurance (if eligible), and beneficiary travel (if eligible) to primary caregivers of eligible veterans. PCAFC was originally reserved for veterans who had onset of service-related disability after September 11, 2001, with an associated personal care need. In this population, PCAFC demonstrated an increased usage of clinical resources, likely related to increased ease in accessing care.¹³

The cohort of post-9/11 veterans is very different from the cohort of veterans and their caregivers who may now qualify for the PCAFC after its October 2020 expansion. Veterans from the Vietnam, Korean, and World War II eras of conflict have rates of service-connected disability 2 to 3 times higher than those of post-9/11 era veterans and are at greater risk for dementia.⁹ Veterans aged ≥ 75 years who have service connection also report higher rates of difficulty with independent living and self-care compared with their younger peers.⁹ Since dementia and PTSD are common causes of service connection and disability it is likely that a significant proportion of older veterans will be eligible to apply for the newly expanded PCAFC.

To be eligible for PCAFC, a veteran must have a service-connected disability rating of ≥ 70% and must need in-person care services for ≥ 6 continuous months, based on either an inability to perform an ADL, or a need for supervision, protection, or instruction. PGCSS and PCAFC also may improve access to dementia-specific resources and care. These programs jointly improve access to care, clinical and community resources, and support, and serve to further support in-home care with consistent caregivers who have known the veterans for decades as an alternative to SNF care, as they did in this case. Although in-home care with appropriate support has not been found to be clinically superior, it has been found to be noninferior to SNF living for older adults.¹⁴ More familiar environments and caregivers such as those at home may also reduce the risk of long-term adverse outcomes such as delirium and falls, but there is still more research to be done to examine the ultimate clinical impact of aging in place for people with dementia. Most importantly, for many veterans and their family caregivers, living at home is preferable to SNF care, but may prove especially challenging in the context of advanced-stage dementia without CSP support.

It is not clear how CSP use or increased access to PCAFC will impact costs. However, the PCAFC monthly stipend is scaled to the median wage of a home health aide and to the location of the caregiver, which is considerably less than the cost of recurrent hospitalization or a year of facility-level care.¹⁵ The CSP may eventually be a successful long-term investment in cost savings. In order to ensure the process for PCAFC approval is uniform and prompt as the program expands, CSP has restructured, increasing the number of employees, improving the patient review process, and expanding staff training.¹⁶ The VA plans to continually re-assess CSP using the infrastructure of the Caregiver Record Management Application as it continues to expand.¹⁷

Conclusions

Dementia and PTSD commonly coexist and are a significant source of disability in the service-connected veteran population. This case brings attention to the recent expansion of PCAFC, which now has the potential to support eligible veterans from the World War II, Korean, and Vietnam-era conflicts, in whom these illnesses are more common. In this case, in-home care was preferred by the veteran and primary caregiver but would not have been possible without a complex intervention. There is still more research to be done on the best way to meet the needs of older adults with dementia, the impact of in-home care, and the system-wide implications of PCAFC, especially as the program grows. However, in-home care is preferable to SNF living for many veterans and caregivers, and CSP will continue to be an essential element of providing care for this population.

Acknowledgments

This material is the result of work supported with resources and the use of facilities at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. The authors would also like to thank the members of the Veterans Affairs Central Office and National Caregiver Support Program Office, including Elyse Kaplan, Melinda Hogue, Beth Wolfsohn, Colleen Richardson, and Timothy Jobin, for their thorough review of the work and edits to ensure accurate program description.

Caregiving for a person with dementia in the community can be extremely difficult work. Much of this work falls on unpaid or informal caregivers. Sixty-three percent of older adults with dementia depend completely on unpaid caregivers, and an additional 26% receive some combination of paid and unpaid support, together comprising nearly 90% of the more than 3 million older Americans with dementia.¹ In-home care is preferable for these patients. For veterans, the Caregiver Support Program (CSP) is the only US Department of Veterans Affairs (VA) program that exclusively supports caregivers. Although the CSP is not a nursing home diversion or cost savings program, successfully enabling at-home living in lieu of facility living also has the potential to reduce overall cost of care, and most importantly, to enable veterans who desire it to age at home.^2,3

The CSP has 2 unique programs for caregivers of eligible veterans. The Program of General Caregiver Support Services (PGCSS) provides resources, education, and support to caregivers of all veterans enrolled in the Veterans Health Administration (VHA). The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides education and training, access to health care insurance if eligible, mental health counseling, access to a monthly caregiver stipend, enhanced respite care, wellness contacts, and travel compensation for VA health care appointments (Table 1).^4,5

Patients undergo a rigorous assessment and highly specialized and individualized clinical decision-making process to confirm the service is appropriate for the patient. PCAFC was restructured and expanded on October 1, 2020.⁶ Currently, veterans who incurred or aggravated a serious injury (defined by a single or combined service-connection rating of ≥ 70%) in active military service before May 8, 1975, or after September 10, 2001, are eligible for PCAFC.⁶ Most notably, these changes opened eligibility in the PCAFC to caregivers of veterans from the Vietnam, Korean, and World War II eras of conflict and veterans with dependence in activities of daily living (ADL) due to a wider variety of illnesses, including dementia.⁶ The PCAFC is set to further expand to caregivers of otherwise eligible veterans of all eras of service on October 1, 2022, 2 years after the initial expansion, as laid out in the 2018 VA MISSION Act.⁶ Additional information on the history of the PGCSS and PCAFC and eligibility criteria for veterans and their family caregivers can be found in Tables 2 and 3.

Case Presentation

A male combat veteran presented to his primary care practitioner (PCP) with concerns of several years of progressive changes in gait, forgetfulness, and a gradual decline in the ability to live independently without assistance. At that time, his medical history was notable for PTSD (50% service connection), which had been diagnosed over a decade prior (but for which the veteran had refused medication or therapy on multiple occasions, stating he preferred to “breathe through” his intrusive symptom flare-ups), localized prostate cancer with a radical prostatectomy (100% service connection), multiple kidney stones with persistent left ureteral inflammation, and arteriosclerotic heart disease (10% service connection). A Saint Louis University Mental Status Exam (SLUMS) performed by the PCP was notable for a score of 9/30, in the dementia range. A computed tomography of the brain demonstrated scattered foci of hypoattenuation attributable to normal aging without any other pathology noted.

The veteran was referred to the Cognitive Care clinic, a local longitudinal multidisciplinary dementia care clinic, along with his spouse/caregiver. Cognitive testing was performed by a licensed clinical psychologist in the clinic and was notable for a Mini-Mental State Exam (MMSE) score of 18/30, also in the dementia range, and a more robust neuropsychiatric battery demonstrated borderline intact memory and language function but impairments in executive function and visuospatial skills. The patient’s clinical history included functional loss over time, with total dependence in instrumental activities of daily living (IADL), or tasks necessary to be fully independent or manage a household, including inability to manage finances, and some need for assistance in ADL, or personal care tasks such as dressing or grooming, including bathing. Physical examination was notable for bradykinesia, a shuffling gait, and rare episodes of speaking to someone who was not in the room, thought to be due to mild nondistressing hallucinations.

A diagnosis of LBD was made. At time of diagnosis, the patient met criteria for probable dementia with Lewy bodies, with 2 of 4 core clinical features (hallucinations and Parkinsonism), and multiple supportive features (gait disturbance, sensory disturbance, and altered mood).^10,11 The veteran continued to develop more supportive features for diagnosis of LBD over time, including evidence of autonomic instability.

The veteran and his caregiver were educated on his diagnosis, and longitudinal support was offered. The veteran was no longer driving, and due to the severity of his symptoms, the importance of driving cessation was reinforced by the care team. Over the course of the next year, his illness progressed, with more frequent behaviors and psychological symptoms of dementia (BPSD). He began to exhibit nighttime wandering throughout the house and became more anxious and restless during the day. He lost the ability to make his own health care decisions, and his spouse became his activated health care power of attorney (HCPOA). His BPSD became more disruptive to daily life and was accompanied by a change in the character of his hallucinations, with prior nondistressing visions of other people being replaced with visions of war, burning bodies, and violence, much of it related to combat experiences in Vietnam. The BPSD began to include hiding behind furniture, running out of the house, and shouting and crying in response to hallucinations. At times, his BPSD became violent, lashing out in fear against his hallucinations and caregiver.

The veteran’s change in BPSD was concerning for a new baseline, rather than being clearly related to an underlying unmet physical need, such as pain, hunger, sleep, or discomfort. Multiple hospital admissions during that year involved IV hydration and treatment for urinary tract infections (UTI) for several days of inpatient stay at a time, but these behaviors persisted despite infection treatment and hydration. The patient’s changes in BPSD were thought to be secondary to uncovered and intensified PTSD in the setting of progressive dementia. Due to the clear danger the patient posed to himself and others, potential treatment options for these PTSD-related hallucinations were discussed with his caregiver. The caregiver shared that the patient’s BPSD and hallucinations were so distressing that “he would never want to live like this,” and that things had progressed to the point that “he has no quality of life.”

Oral aripiprazole 2 mg twice daily was prescribed after the risks of infection, cardiac complications, and exacerbation of movement disorder symptoms, such as increased stiffness and falls, were discussed with the caregiver. The caregiver was employed and relied on continued employment for income, but the patient could not be safely left alone. As the patient and his caregiver had reached a crisis point and living at home no longer appeared to be safe, the patient was referred to a VA-contracted skilled nursing facility (SNF) for long-term care. The patient’s caregiver was also referred to CSP for support during this transition. Due to the patient’s level of service connection and personal needs, as well as the patient and caregiver’s preference for the veteran to remain in his home, they were evaluated for the PCAFC for enhanced support to enable home as an alternative to facility living, should the patient respond to the antipsychotic therapy sufficiently, which was evaluated on a regular basis.

After several months, the patient’s BPSD had improved significantly, and he was no longer experiencing distressing hallucinations. However, his mobility also declined, and he became fully dependent in most ADL, including transfers, hygiene, and toileting. Due to the COVID-19 pandemic, visitation was limited, which was difficult for both the patient and his caregiver. The veteran and caregiver were approved for PCAFC due to the veteran’s combination of service-connected illnesses > 70%, dependence for most ADLs, and need for continuous supervision. A transfer home from the SNF was arranged.

The PCAFC allowed the veteran’s caregiver and family members to provide in-home full-time caregiving, as an alternative to facility placement. The caregiver received a variety of support, including access to peer support, instruction on ways to assist in his toileting, hygiene, and transfers, and a caregiving stipend. In addition to offsetting lost wages, the stipend also helped offset the cost of care supplies which were not provided or were not readily available from the VA, which at the time included the patient’s preferred nutritional supplement and some supplies for personal care.

The veteran’s care needs continued to escalate. A fall at home resulted in a hip fracture, which was treated with surgical pinning. Postfracture physical therapy in a facility was considered, but ultimately was provided at home. The patient also experienced multiple UTIs and resulting delirium, with accompanying agitation and hallucinations. These episodes improved with IV antibiotics and hydration during short hospital stays. Ultimately, a computed tomography demonstrated overflow incontinence likely related to urologic damage from prior kidney stones and stent placement was recommended.

Visiting skilled nurses for the patient’s area were difficult to coordinate but were eventually arranged. The patient continued residing in his home with the support of his caregiver, the PCAFC, and the local VA medical center geriatric and transitional care services. The patient was also referred to the palliative care outpatient specialty clinic for discussion of goals of care and assistance with advance care planning as his illness progressed. Mental health and geriatric psychiatry consult teams were considered for this case but not utilized.

Discussion

Older adult Americans are at high risk of poor financial wellbeing, with nearly one quarter of Americans aged > 62 years experiencing financial insecurity.¹² Even in this case with health care provided by the VA, successful in-home care was challenging and required a dedicated live-in caregiver, care coordination resources, and financial support. As part of its mission of caring for veterans, the VA has instituted CSP, whose mission is to promote the health and well-being of family caregivers through education, support, and services.

PCAFC offers enhanced clinical support for caregivers of eligible veterans who are seriously injured. This includes resources, education, support, financial stipends, health insurance (if eligible), and beneficiary travel (if eligible) to primary caregivers of eligible veterans. PCAFC was originally reserved for veterans who had onset of service-related disability after September 11, 2001, with an associated personal care need. In this population, PCAFC demonstrated an increased usage of clinical resources, likely related to increased ease in accessing care.¹³

The cohort of post-9/11 veterans is very different from the cohort of veterans and their caregivers who may now qualify for the PCAFC after its October 2020 expansion. Veterans from the Vietnam, Korean, and World War II eras of conflict have rates of service-connected disability 2 to 3 times higher than those of post-9/11 era veterans and are at greater risk for dementia.⁹ Veterans aged ≥ 75 years who have service connection also report higher rates of difficulty with independent living and self-care compared with their younger peers.⁹ Since dementia and PTSD are common causes of service connection and disability it is likely that a significant proportion of older veterans will be eligible to apply for the newly expanded PCAFC.

To be eligible for PCAFC, a veteran must have a service-connected disability rating of ≥ 70% and must need in-person care services for ≥ 6 continuous months, based on either an inability to perform an ADL, or a need for supervision, protection, or instruction. PGCSS and PCAFC also may improve access to dementia-specific resources and care. These programs jointly improve access to care, clinical and community resources, and support, and serve to further support in-home care with consistent caregivers who have known the veterans for decades as an alternative to SNF care, as they did in this case. Although in-home care with appropriate support has not been found to be clinically superior, it has been found to be noninferior to SNF living for older adults.¹⁴ More familiar environments and caregivers such as those at home may also reduce the risk of long-term adverse outcomes such as delirium and falls, but there is still more research to be done to examine the ultimate clinical impact of aging in place for people with dementia. Most importantly, for many veterans and their family caregivers, living at home is preferable to SNF care, but may prove especially challenging in the context of advanced-stage dementia without CSP support.

It is not clear how CSP use or increased access to PCAFC will impact costs. However, the PCAFC monthly stipend is scaled to the median wage of a home health aide and to the location of the caregiver, which is considerably less than the cost of recurrent hospitalization or a year of facility-level care.¹⁵ The CSP may eventually be a successful long-term investment in cost savings. In order to ensure the process for PCAFC approval is uniform and prompt as the program expands, CSP has restructured, increasing the number of employees, improving the patient review process, and expanding staff training.¹⁶ The VA plans to continually re-assess CSP using the infrastructure of the Caregiver Record Management Application as it continues to expand.¹⁷

Conclusions

Dementia and PTSD commonly coexist and are a significant source of disability in the service-connected veteran population. This case brings attention to the recent expansion of PCAFC, which now has the potential to support eligible veterans from the World War II, Korean, and Vietnam-era conflicts, in whom these illnesses are more common. In this case, in-home care was preferred by the veteran and primary caregiver but would not have been possible without a complex intervention. There is still more research to be done on the best way to meet the needs of older adults with dementia, the impact of in-home care, and the system-wide implications of PCAFC, especially as the program grows. However, in-home care is preferable to SNF living for many veterans and caregivers, and CSP will continue to be an essential element of providing care for this population.

Acknowledgments

This material is the result of work supported with resources and the use of facilities at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. The authors would also like to thank the members of the Veterans Affairs Central Office and National Caregiver Support Program Office, including Elyse Kaplan, Melinda Hogue, Beth Wolfsohn, Colleen Richardson, and Timothy Jobin, for their thorough review of the work and edits to ensure accurate program description.