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Clinic eases pediatric-adult transition in sickle cell disease
CONCORD, N.C. – Teenage sickle cell disease patients transitioning to adulthood can often find the move to adult providers challenging, causing some patients to lose interest in self-care at a critical point in life, but a transitional program can help them develop the skills they need to manage their disease and avoid risky behaviors, according to psychologist Anya Griffin, PhD.
Managing pain in teenagers and young adults with sickle cell disease (SCD) is fraught with challenges, said Dr. Griffin, who led the SCD transition program at Children’s Healthcare of Atlanta and is now the clinical director of the Stanford (Calif.) Children’s Health Pediatric Rehabilitation Program, an intensive pain management program for pediatric chronic pain.
“Think about who you are when you’re a teenager, when you’re a young adult, what’s going on: dating, sex, parties, college, all-night study sessions,” she said at a Sickle Cell Disease Symposium held by Carolinas Health Care System. “But in the world of sickle cell, these are critical choices that have dire consequences.” Those consequences include dehydration from drinking, fatigue from lack of sleep, and pain crises.
Compounding these challenges is the prevalence of depression and other psychological complications in this age group. And among SCD patients, there can be a sense of grief, Dr. Griffin said.
“Grief is something we tend not to talk too much about,” she said. That grief can manifest in excessive absences from school or work. “Sudden academic declines are something we really have to pay attention to,” Dr. Griffin said.
Silent strokes are also of concern in this age group. “I don’t know if we fully understand the impact on each individual unless we do neuropsychological testing,” she said. The intervals for neuropsychological testing should be in childhood to determine a baseline, then again in adolescence and adulthood. For college-bound students, testing may be a requirement for them to receive medical and physical accommodations, Dr. Griffin said.
While in their late teens and early twenties, SCD patients often rely on pediatric care and can get caught between pediatric and adult providers, she said. That prompted Children’s Healthcare of Atlanta to start a program that essentially hands off those patients from pediatric to adult providers and works with patients to reduce their risks.
As teens approach age 18, they come to the clinic to meet with adult providers and tour the facility. The program involves social workers, vocational and school counselors, and mentors and peer support. “It takes an entire village to address the concerns of transition,” Dr. Griffin said.
Support groups and home visits by providers can also play a key role in the transition protocol, as can telemedicine. “The technology is now there; now we have to figure out how we’re going to start using it,” she said.
This full transitional process can involve multiple appointments with a variety of providers. It’s also important that patients – not parents – interact with providers, Dr. Griffin said.
From January 2007 to September 2012, 74 patients participated in the SCD transition at Children’s Healthcare of Atlanta. Participants who attended more than one transition clinic visit in Atlanta (n = 9) had an average baseline score of 60% on an SCD knowledge questionnaire. But 6 months later, those scores improved to 80%, on average. “We found that teenagers who came to that type of clinic more than once improved pretty well,” Dr. Griffin said.
Dr. Griffin reported having no relevant financial disclosures.
CONCORD, N.C. – Teenage sickle cell disease patients transitioning to adulthood can often find the move to adult providers challenging, causing some patients to lose interest in self-care at a critical point in life, but a transitional program can help them develop the skills they need to manage their disease and avoid risky behaviors, according to psychologist Anya Griffin, PhD.
Managing pain in teenagers and young adults with sickle cell disease (SCD) is fraught with challenges, said Dr. Griffin, who led the SCD transition program at Children’s Healthcare of Atlanta and is now the clinical director of the Stanford (Calif.) Children’s Health Pediatric Rehabilitation Program, an intensive pain management program for pediatric chronic pain.
“Think about who you are when you’re a teenager, when you’re a young adult, what’s going on: dating, sex, parties, college, all-night study sessions,” she said at a Sickle Cell Disease Symposium held by Carolinas Health Care System. “But in the world of sickle cell, these are critical choices that have dire consequences.” Those consequences include dehydration from drinking, fatigue from lack of sleep, and pain crises.
Compounding these challenges is the prevalence of depression and other psychological complications in this age group. And among SCD patients, there can be a sense of grief, Dr. Griffin said.
“Grief is something we tend not to talk too much about,” she said. That grief can manifest in excessive absences from school or work. “Sudden academic declines are something we really have to pay attention to,” Dr. Griffin said.
Silent strokes are also of concern in this age group. “I don’t know if we fully understand the impact on each individual unless we do neuropsychological testing,” she said. The intervals for neuropsychological testing should be in childhood to determine a baseline, then again in adolescence and adulthood. For college-bound students, testing may be a requirement for them to receive medical and physical accommodations, Dr. Griffin said.
While in their late teens and early twenties, SCD patients often rely on pediatric care and can get caught between pediatric and adult providers, she said. That prompted Children’s Healthcare of Atlanta to start a program that essentially hands off those patients from pediatric to adult providers and works with patients to reduce their risks.
As teens approach age 18, they come to the clinic to meet with adult providers and tour the facility. The program involves social workers, vocational and school counselors, and mentors and peer support. “It takes an entire village to address the concerns of transition,” Dr. Griffin said.
Support groups and home visits by providers can also play a key role in the transition protocol, as can telemedicine. “The technology is now there; now we have to figure out how we’re going to start using it,” she said.
This full transitional process can involve multiple appointments with a variety of providers. It’s also important that patients – not parents – interact with providers, Dr. Griffin said.
From January 2007 to September 2012, 74 patients participated in the SCD transition at Children’s Healthcare of Atlanta. Participants who attended more than one transition clinic visit in Atlanta (n = 9) had an average baseline score of 60% on an SCD knowledge questionnaire. But 6 months later, those scores improved to 80%, on average. “We found that teenagers who came to that type of clinic more than once improved pretty well,” Dr. Griffin said.
Dr. Griffin reported having no relevant financial disclosures.
CONCORD, N.C. – Teenage sickle cell disease patients transitioning to adulthood can often find the move to adult providers challenging, causing some patients to lose interest in self-care at a critical point in life, but a transitional program can help them develop the skills they need to manage their disease and avoid risky behaviors, according to psychologist Anya Griffin, PhD.
Managing pain in teenagers and young adults with sickle cell disease (SCD) is fraught with challenges, said Dr. Griffin, who led the SCD transition program at Children’s Healthcare of Atlanta and is now the clinical director of the Stanford (Calif.) Children’s Health Pediatric Rehabilitation Program, an intensive pain management program for pediatric chronic pain.
“Think about who you are when you’re a teenager, when you’re a young adult, what’s going on: dating, sex, parties, college, all-night study sessions,” she said at a Sickle Cell Disease Symposium held by Carolinas Health Care System. “But in the world of sickle cell, these are critical choices that have dire consequences.” Those consequences include dehydration from drinking, fatigue from lack of sleep, and pain crises.
Compounding these challenges is the prevalence of depression and other psychological complications in this age group. And among SCD patients, there can be a sense of grief, Dr. Griffin said.
“Grief is something we tend not to talk too much about,” she said. That grief can manifest in excessive absences from school or work. “Sudden academic declines are something we really have to pay attention to,” Dr. Griffin said.
Silent strokes are also of concern in this age group. “I don’t know if we fully understand the impact on each individual unless we do neuropsychological testing,” she said. The intervals for neuropsychological testing should be in childhood to determine a baseline, then again in adolescence and adulthood. For college-bound students, testing may be a requirement for them to receive medical and physical accommodations, Dr. Griffin said.
While in their late teens and early twenties, SCD patients often rely on pediatric care and can get caught between pediatric and adult providers, she said. That prompted Children’s Healthcare of Atlanta to start a program that essentially hands off those patients from pediatric to adult providers and works with patients to reduce their risks.
As teens approach age 18, they come to the clinic to meet with adult providers and tour the facility. The program involves social workers, vocational and school counselors, and mentors and peer support. “It takes an entire village to address the concerns of transition,” Dr. Griffin said.
Support groups and home visits by providers can also play a key role in the transition protocol, as can telemedicine. “The technology is now there; now we have to figure out how we’re going to start using it,” she said.
This full transitional process can involve multiple appointments with a variety of providers. It’s also important that patients – not parents – interact with providers, Dr. Griffin said.
From January 2007 to September 2012, 74 patients participated in the SCD transition at Children’s Healthcare of Atlanta. Participants who attended more than one transition clinic visit in Atlanta (n = 9) had an average baseline score of 60% on an SCD knowledge questionnaire. But 6 months later, those scores improved to 80%, on average. “We found that teenagers who came to that type of clinic more than once improved pretty well,” Dr. Griffin said.
Dr. Griffin reported having no relevant financial disclosures.
EXPERT ANALYSIS FROM A MEETING ON SICKLE CELL DISEASE
Emerging sickle cell agents target new pathways
CONCORD, N.C. – Approved treatments for sickle cell disease have been extremely limited, but there are several therapies in the research pipeline that use new pathways to target the disease.
“We do have much better understanding of the pathophysiology, which is getting us a few more targets to aim at,” Julie Kanter, MD, director of sickle cell research at the Medical University of South Carolina, Charleston, said at Sickle Cell Disease Symposium held by Carolinas Health Care System. These targets include influencing how cells interact with the vascular endothelium, inhibiting platelets, and preventing cell sickling and inflammation.
“I’m waiting to see who’s willing to take it just because it is a lot of powder that the patient has to mix and drink twice a day, but it does look promising to reduce inflammation,” Dr. Kanter said.
SCD pipeline
Deeper in the sickle cell pipeline is a class of antisickling agents known as hemoglobin modifiers. “We’re tying to change the way hemoglobin binds to oxygen, and if we can keep hemoglobin binding to oxygen longer, it actually decreases the risk of hemoglobin sickling and polymerizing in the cell,” Dr. Kanter explained.
One hemoglobin modifier is voxelotor (previously called GBT440), a once-daily oral agent that Global Blood Therapeutics has in development.
Another category of antisickling agents that researchers are looking at is anti-inflammatory moderators, Dr. Kanter said. These include nitric oxide donors like sildenafil, which did not “quite work” in SCD, and arginine and glutamine, which increase the amount of nitric oxide once in the body “and hopefully reduce the risk of sickling,” she said. “If we can improve inflammation, we might be able to improve the risk of crisis.”
Cell adhesion modifiers are a drug class that aims to prevent cells from binding to each other. These include platelet inhibitors and endothelial blockers. “There are several antiplatelet agents that are approved really for stroke prevention or heart attack prevention, and we’re trying to see if we can repurpose these in sickle cell disease in a specific pathway that allows the platelet to stick to the endothelium, but if we only inhibit one pathway it should not increase the risk of bleeding,” Dr. Kanter said.
One platelet inhibition pathway that researchers are focused on is the P2Y12 adenosine diphosphate blockade, which the platelet inhibitor prasugrel (Effient) acts on. A 2016 study of this pathway in SCD “wasn’t successful,” Dr. Kanter said, “but it had some interesting results” – namely that the drug may be most effective in adolescents (N Engl J Med. 2016 Feb 18;374[7]:625-35).
Selectin-blocking medications are a drug class that act on white blood cell adhesion to, and movement through, the endothelium, Dr. Kanter said. “Neutrophils can instigate a sickle cell crisis, so if we can interrupt some of this rolling or sticking, could we decrease the risk of a sickle cell crisis?” The drug GMI-1070 is currently being studied in a phase III trial and so far has shown “a significant decrease in the amount of opioids used by those individuals who received the study drug,” she said.
Crizanlizumab (also known as SelG1) is a humanized monoclonal antibody with an affinity to P-selectin and is the subject of the phase II SUSTAIN trial, which included a cohort that also was taking hydroxyurea. Treatment with high-dose crizanlizumab resulted in an annual rate of sickle cell–related pain crises that was more than 45% lower than with placebo (N Engl J Med. 2017 Feb 2;376[5]:429-39).
Stem cell transplants
Besides drugs, stem cell transplants to treat SCD have advanced in recent years to the point where cure rates are exceeding 90%, Dr. Kanter noted. “However, the real issue with stem cells is that patients still don’t have enough donors,” she said.
SCD is also potentially amenable to gene therapy, Dr. Kanter said, noting that SCD gene therapy trials in progress are looking at harvesting patients’ own bone marrow, using the lentivirus viral vector, inserting a gene to increase production of nonsickle hemoglobin, and using myeloablative chemotherapy to remove old marrow and replace it with new, manipulated bone marrow.
Several programs are investigating using a gene editing technique, known as CRISPR/Cas9, to alter the BCL11A gene to maintain fetal hemoglobin production.
“We all make fetal hemoglobin at birth, and then over 6 months to 1 year of life, our bodies convert fetal hemoglobin to adult hemoglobin,” she said. “In sickle cell disease, it converts to sickle hemoglobin. What if we could prevent that conversion and keep the fetal hemoglobin turned on?” That could potentially eradicate the complications of SCD starting at an early age, Dr. Kanter said.
Dr. Kanter, who has been involved in several of the SCD trials, reported relationships with Pfizer, AstraZeneca, Bluebird Bio, Global Blood Therapeutics, Novartis, Guidepoint, GLG, ApoPharma, and Purdue Pharma.
CONCORD, N.C. – Approved treatments for sickle cell disease have been extremely limited, but there are several therapies in the research pipeline that use new pathways to target the disease.
“We do have much better understanding of the pathophysiology, which is getting us a few more targets to aim at,” Julie Kanter, MD, director of sickle cell research at the Medical University of South Carolina, Charleston, said at Sickle Cell Disease Symposium held by Carolinas Health Care System. These targets include influencing how cells interact with the vascular endothelium, inhibiting platelets, and preventing cell sickling and inflammation.
“I’m waiting to see who’s willing to take it just because it is a lot of powder that the patient has to mix and drink twice a day, but it does look promising to reduce inflammation,” Dr. Kanter said.
SCD pipeline
Deeper in the sickle cell pipeline is a class of antisickling agents known as hemoglobin modifiers. “We’re tying to change the way hemoglobin binds to oxygen, and if we can keep hemoglobin binding to oxygen longer, it actually decreases the risk of hemoglobin sickling and polymerizing in the cell,” Dr. Kanter explained.
One hemoglobin modifier is voxelotor (previously called GBT440), a once-daily oral agent that Global Blood Therapeutics has in development.
Another category of antisickling agents that researchers are looking at is anti-inflammatory moderators, Dr. Kanter said. These include nitric oxide donors like sildenafil, which did not “quite work” in SCD, and arginine and glutamine, which increase the amount of nitric oxide once in the body “and hopefully reduce the risk of sickling,” she said. “If we can improve inflammation, we might be able to improve the risk of crisis.”
Cell adhesion modifiers are a drug class that aims to prevent cells from binding to each other. These include platelet inhibitors and endothelial blockers. “There are several antiplatelet agents that are approved really for stroke prevention or heart attack prevention, and we’re trying to see if we can repurpose these in sickle cell disease in a specific pathway that allows the platelet to stick to the endothelium, but if we only inhibit one pathway it should not increase the risk of bleeding,” Dr. Kanter said.
One platelet inhibition pathway that researchers are focused on is the P2Y12 adenosine diphosphate blockade, which the platelet inhibitor prasugrel (Effient) acts on. A 2016 study of this pathway in SCD “wasn’t successful,” Dr. Kanter said, “but it had some interesting results” – namely that the drug may be most effective in adolescents (N Engl J Med. 2016 Feb 18;374[7]:625-35).
Selectin-blocking medications are a drug class that act on white blood cell adhesion to, and movement through, the endothelium, Dr. Kanter said. “Neutrophils can instigate a sickle cell crisis, so if we can interrupt some of this rolling or sticking, could we decrease the risk of a sickle cell crisis?” The drug GMI-1070 is currently being studied in a phase III trial and so far has shown “a significant decrease in the amount of opioids used by those individuals who received the study drug,” she said.
Crizanlizumab (also known as SelG1) is a humanized monoclonal antibody with an affinity to P-selectin and is the subject of the phase II SUSTAIN trial, which included a cohort that also was taking hydroxyurea. Treatment with high-dose crizanlizumab resulted in an annual rate of sickle cell–related pain crises that was more than 45% lower than with placebo (N Engl J Med. 2017 Feb 2;376[5]:429-39).
Stem cell transplants
Besides drugs, stem cell transplants to treat SCD have advanced in recent years to the point where cure rates are exceeding 90%, Dr. Kanter noted. “However, the real issue with stem cells is that patients still don’t have enough donors,” she said.
SCD is also potentially amenable to gene therapy, Dr. Kanter said, noting that SCD gene therapy trials in progress are looking at harvesting patients’ own bone marrow, using the lentivirus viral vector, inserting a gene to increase production of nonsickle hemoglobin, and using myeloablative chemotherapy to remove old marrow and replace it with new, manipulated bone marrow.
Several programs are investigating using a gene editing technique, known as CRISPR/Cas9, to alter the BCL11A gene to maintain fetal hemoglobin production.
“We all make fetal hemoglobin at birth, and then over 6 months to 1 year of life, our bodies convert fetal hemoglobin to adult hemoglobin,” she said. “In sickle cell disease, it converts to sickle hemoglobin. What if we could prevent that conversion and keep the fetal hemoglobin turned on?” That could potentially eradicate the complications of SCD starting at an early age, Dr. Kanter said.
Dr. Kanter, who has been involved in several of the SCD trials, reported relationships with Pfizer, AstraZeneca, Bluebird Bio, Global Blood Therapeutics, Novartis, Guidepoint, GLG, ApoPharma, and Purdue Pharma.
CONCORD, N.C. – Approved treatments for sickle cell disease have been extremely limited, but there are several therapies in the research pipeline that use new pathways to target the disease.
“We do have much better understanding of the pathophysiology, which is getting us a few more targets to aim at,” Julie Kanter, MD, director of sickle cell research at the Medical University of South Carolina, Charleston, said at Sickle Cell Disease Symposium held by Carolinas Health Care System. These targets include influencing how cells interact with the vascular endothelium, inhibiting platelets, and preventing cell sickling and inflammation.
“I’m waiting to see who’s willing to take it just because it is a lot of powder that the patient has to mix and drink twice a day, but it does look promising to reduce inflammation,” Dr. Kanter said.
SCD pipeline
Deeper in the sickle cell pipeline is a class of antisickling agents known as hemoglobin modifiers. “We’re tying to change the way hemoglobin binds to oxygen, and if we can keep hemoglobin binding to oxygen longer, it actually decreases the risk of hemoglobin sickling and polymerizing in the cell,” Dr. Kanter explained.
One hemoglobin modifier is voxelotor (previously called GBT440), a once-daily oral agent that Global Blood Therapeutics has in development.
Another category of antisickling agents that researchers are looking at is anti-inflammatory moderators, Dr. Kanter said. These include nitric oxide donors like sildenafil, which did not “quite work” in SCD, and arginine and glutamine, which increase the amount of nitric oxide once in the body “and hopefully reduce the risk of sickling,” she said. “If we can improve inflammation, we might be able to improve the risk of crisis.”
Cell adhesion modifiers are a drug class that aims to prevent cells from binding to each other. These include platelet inhibitors and endothelial blockers. “There are several antiplatelet agents that are approved really for stroke prevention or heart attack prevention, and we’re trying to see if we can repurpose these in sickle cell disease in a specific pathway that allows the platelet to stick to the endothelium, but if we only inhibit one pathway it should not increase the risk of bleeding,” Dr. Kanter said.
One platelet inhibition pathway that researchers are focused on is the P2Y12 adenosine diphosphate blockade, which the platelet inhibitor prasugrel (Effient) acts on. A 2016 study of this pathway in SCD “wasn’t successful,” Dr. Kanter said, “but it had some interesting results” – namely that the drug may be most effective in adolescents (N Engl J Med. 2016 Feb 18;374[7]:625-35).
Selectin-blocking medications are a drug class that act on white blood cell adhesion to, and movement through, the endothelium, Dr. Kanter said. “Neutrophils can instigate a sickle cell crisis, so if we can interrupt some of this rolling or sticking, could we decrease the risk of a sickle cell crisis?” The drug GMI-1070 is currently being studied in a phase III trial and so far has shown “a significant decrease in the amount of opioids used by those individuals who received the study drug,” she said.
Crizanlizumab (also known as SelG1) is a humanized monoclonal antibody with an affinity to P-selectin and is the subject of the phase II SUSTAIN trial, which included a cohort that also was taking hydroxyurea. Treatment with high-dose crizanlizumab resulted in an annual rate of sickle cell–related pain crises that was more than 45% lower than with placebo (N Engl J Med. 2017 Feb 2;376[5]:429-39).
Stem cell transplants
Besides drugs, stem cell transplants to treat SCD have advanced in recent years to the point where cure rates are exceeding 90%, Dr. Kanter noted. “However, the real issue with stem cells is that patients still don’t have enough donors,” she said.
SCD is also potentially amenable to gene therapy, Dr. Kanter said, noting that SCD gene therapy trials in progress are looking at harvesting patients’ own bone marrow, using the lentivirus viral vector, inserting a gene to increase production of nonsickle hemoglobin, and using myeloablative chemotherapy to remove old marrow and replace it with new, manipulated bone marrow.
Several programs are investigating using a gene editing technique, known as CRISPR/Cas9, to alter the BCL11A gene to maintain fetal hemoglobin production.
“We all make fetal hemoglobin at birth, and then over 6 months to 1 year of life, our bodies convert fetal hemoglobin to adult hemoglobin,” she said. “In sickle cell disease, it converts to sickle hemoglobin. What if we could prevent that conversion and keep the fetal hemoglobin turned on?” That could potentially eradicate the complications of SCD starting at an early age, Dr. Kanter said.
Dr. Kanter, who has been involved in several of the SCD trials, reported relationships with Pfizer, AstraZeneca, Bluebird Bio, Global Blood Therapeutics, Novartis, Guidepoint, GLG, ApoPharma, and Purdue Pharma.
EXPERT ANALYSIS FROM A MEETING ON SICKLE CELL DISEASE
Dedicated sickle cell center offers roadmap for care
CONCORD, N.C. – A care center for acute sickle cell pain management, which includes a dedicated emergency room and a daytime management unit in the hospital, decreased health system costs and the frequency of acute care visits by sickle cell patients, James Eckman, MD, reported at Sickle Cell Disease Symposium held by Carolinas Health Care System.
“In the first 5 years of the center, acute care visits dropped from 16 per patient per year to 10, and admissions per active patient per year dropped from 2.1 to less than one,” said Dr. Eckman, former medical director of the Georgia Comprehensive Sickle Cell Center at Grady Health System in Atlanta.
By 2011, those numbers had dropped further, falling to less than four acute care visits per patient per year and less than 0.5 admissions per patient per year.
The results Dr. Eckman reported are based on 37 years of his experience at Grady Health System, which included setting up an emergency room dedicated to patients with sickle cell disease (SCD) and the launch of a tertiary care clinic in 1985. The Grady SCD database includes more than 4,500 patients, with about 1,000 adults active at any given time.
It’s , according to Emory University.
“We really developed a model that was very cost effective for the management of this disease,” said Dr. Eckman, professor emeritus in hematology and medical oncology at Emory University. “We actually consistently turned a profit in our budget.”
Previously, SCD patients went to the regular emergency department for their acute pain crises, and they would often wait for hours without treatment. “You need to initiate treatment rapidly in these patients,” Dr. Eckman said. “It’s really unacceptable now what’s happening in our emergency rooms, where they have to wait 3, 4, or more hours to get treated while they’re in intolerable pain.”
In 2014, an expert panel issued guidelines for pain management in SCD calling for the initiation of pain treatment for acute crisis within 30 minutes of the patient’s arrival in the emergency department (JAMA. 2014 Sep 10;312[10]:1033-48). “Our goal is 20 minutes to have a complete assessment, get a laboratory draw, and have them on therapy,” he said. “And we were relatively successful in being able to do that.”
Each patient at the center was enrolled in a care management program consisting of 35 assessment and intervention elements. Assessment includes a complete medical evaluation, along with social and psychological evaluations. Intervention entails developing a detailed problem list – including medical, social, and psychological issues – a detailed management plan, and a social support plan. The initial assessment can take 4-8 hours.
For the first decade, the program tracked acute care visits and admissions in 166 continuing patients and saw dramatic declines in both. “The data only go through 1995, but they actually look exactly the same after 1995 all the way up to 2015,” Dr. Eckman said. “This sustained a really marked decrease in health care utilization.”
The program also identified a small group of patients – fewer than 75 out of a base of 1,000 – who accounted for 90% of visits, he said.
Although the Georgia experience is based on a dedicated care center for SCD, the results can be replicated without that type of dedicated infrastructure, Dr. Eckman said. “It is not the 24-hour acute care center,” he said. “It’s the carefully thought out and implemented comprehensive care plan by a multidisciplinary care team dedicated to care of the individuals with sickle cell disease that makes the difference.”
Dr. Eckman reported having no financial disclosures.
CONCORD, N.C. – A care center for acute sickle cell pain management, which includes a dedicated emergency room and a daytime management unit in the hospital, decreased health system costs and the frequency of acute care visits by sickle cell patients, James Eckman, MD, reported at Sickle Cell Disease Symposium held by Carolinas Health Care System.
“In the first 5 years of the center, acute care visits dropped from 16 per patient per year to 10, and admissions per active patient per year dropped from 2.1 to less than one,” said Dr. Eckman, former medical director of the Georgia Comprehensive Sickle Cell Center at Grady Health System in Atlanta.
By 2011, those numbers had dropped further, falling to less than four acute care visits per patient per year and less than 0.5 admissions per patient per year.
The results Dr. Eckman reported are based on 37 years of his experience at Grady Health System, which included setting up an emergency room dedicated to patients with sickle cell disease (SCD) and the launch of a tertiary care clinic in 1985. The Grady SCD database includes more than 4,500 patients, with about 1,000 adults active at any given time.
It’s , according to Emory University.
“We really developed a model that was very cost effective for the management of this disease,” said Dr. Eckman, professor emeritus in hematology and medical oncology at Emory University. “We actually consistently turned a profit in our budget.”
Previously, SCD patients went to the regular emergency department for their acute pain crises, and they would often wait for hours without treatment. “You need to initiate treatment rapidly in these patients,” Dr. Eckman said. “It’s really unacceptable now what’s happening in our emergency rooms, where they have to wait 3, 4, or more hours to get treated while they’re in intolerable pain.”
In 2014, an expert panel issued guidelines for pain management in SCD calling for the initiation of pain treatment for acute crisis within 30 minutes of the patient’s arrival in the emergency department (JAMA. 2014 Sep 10;312[10]:1033-48). “Our goal is 20 minutes to have a complete assessment, get a laboratory draw, and have them on therapy,” he said. “And we were relatively successful in being able to do that.”
Each patient at the center was enrolled in a care management program consisting of 35 assessment and intervention elements. Assessment includes a complete medical evaluation, along with social and psychological evaluations. Intervention entails developing a detailed problem list – including medical, social, and psychological issues – a detailed management plan, and a social support plan. The initial assessment can take 4-8 hours.
For the first decade, the program tracked acute care visits and admissions in 166 continuing patients and saw dramatic declines in both. “The data only go through 1995, but they actually look exactly the same after 1995 all the way up to 2015,” Dr. Eckman said. “This sustained a really marked decrease in health care utilization.”
The program also identified a small group of patients – fewer than 75 out of a base of 1,000 – who accounted for 90% of visits, he said.
Although the Georgia experience is based on a dedicated care center for SCD, the results can be replicated without that type of dedicated infrastructure, Dr. Eckman said. “It is not the 24-hour acute care center,” he said. “It’s the carefully thought out and implemented comprehensive care plan by a multidisciplinary care team dedicated to care of the individuals with sickle cell disease that makes the difference.”
Dr. Eckman reported having no financial disclosures.
CONCORD, N.C. – A care center for acute sickle cell pain management, which includes a dedicated emergency room and a daytime management unit in the hospital, decreased health system costs and the frequency of acute care visits by sickle cell patients, James Eckman, MD, reported at Sickle Cell Disease Symposium held by Carolinas Health Care System.
“In the first 5 years of the center, acute care visits dropped from 16 per patient per year to 10, and admissions per active patient per year dropped from 2.1 to less than one,” said Dr. Eckman, former medical director of the Georgia Comprehensive Sickle Cell Center at Grady Health System in Atlanta.
By 2011, those numbers had dropped further, falling to less than four acute care visits per patient per year and less than 0.5 admissions per patient per year.
The results Dr. Eckman reported are based on 37 years of his experience at Grady Health System, which included setting up an emergency room dedicated to patients with sickle cell disease (SCD) and the launch of a tertiary care clinic in 1985. The Grady SCD database includes more than 4,500 patients, with about 1,000 adults active at any given time.
It’s , according to Emory University.
“We really developed a model that was very cost effective for the management of this disease,” said Dr. Eckman, professor emeritus in hematology and medical oncology at Emory University. “We actually consistently turned a profit in our budget.”
Previously, SCD patients went to the regular emergency department for their acute pain crises, and they would often wait for hours without treatment. “You need to initiate treatment rapidly in these patients,” Dr. Eckman said. “It’s really unacceptable now what’s happening in our emergency rooms, where they have to wait 3, 4, or more hours to get treated while they’re in intolerable pain.”
In 2014, an expert panel issued guidelines for pain management in SCD calling for the initiation of pain treatment for acute crisis within 30 minutes of the patient’s arrival in the emergency department (JAMA. 2014 Sep 10;312[10]:1033-48). “Our goal is 20 minutes to have a complete assessment, get a laboratory draw, and have them on therapy,” he said. “And we were relatively successful in being able to do that.”
Each patient at the center was enrolled in a care management program consisting of 35 assessment and intervention elements. Assessment includes a complete medical evaluation, along with social and psychological evaluations. Intervention entails developing a detailed problem list – including medical, social, and psychological issues – a detailed management plan, and a social support plan. The initial assessment can take 4-8 hours.
For the first decade, the program tracked acute care visits and admissions in 166 continuing patients and saw dramatic declines in both. “The data only go through 1995, but they actually look exactly the same after 1995 all the way up to 2015,” Dr. Eckman said. “This sustained a really marked decrease in health care utilization.”
The program also identified a small group of patients – fewer than 75 out of a base of 1,000 – who accounted for 90% of visits, he said.
Although the Georgia experience is based on a dedicated care center for SCD, the results can be replicated without that type of dedicated infrastructure, Dr. Eckman said. “It is not the 24-hour acute care center,” he said. “It’s the carefully thought out and implemented comprehensive care plan by a multidisciplinary care team dedicated to care of the individuals with sickle cell disease that makes the difference.”
Dr. Eckman reported having no financial disclosures.
EXPERT ANALYSIS FROM A MEETING ON SICKLE CELL DISEASE