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Gene Tests Could Predict if a Drug Will Work for a Patient
What if there were tests that could tell you whether the following drugs were a good match for your patients: Antidepressants, statins, painkillers, anticlotting medicines, chemotherapy agents, HIV treatments, organ transplant antirejection drugs, proton pump inhibitors for heartburn, and more?
That’s quite a list. And that’s pharmacogenetics, testing patients for genetic differences that affect how well a given drug will work for them and what kind of side effects to expect.
“About 9 out of 10 people will have a genetic difference in their DNA that can impact how they respond to common medications,” said Emily J. Cicali, PharmD, a clinical associate at the University of Florida College of Pharmacy, Gainesville.
Dr. Cicali is the clinical director of UF Health’s MyRx, a virtual program that gives Florida and New Jersey residents access to pharmacogenetic (PGx) tests plus expert interpretation by the health system’s pharmacists. Genetic factors are thought to contribute to about 25% or more of inappropriate drug responses or adverse events, said Kristin Wiisanen, PharmD, dean of the College of Pharmacy at Rosalind Franklin University of Medicine and Science in North Chicago.
Dr. Cicali said.
Through a cheek swab or blood sample, the MyRx program — and a growing number of health system programs, doctors’ offices, and home tests available across the United States — gives consumers a window on inherited gene variants that can affect how their body activates, metabolizes, and clears away medications from a long list of widely used drugs.
Why PGx Tests Can Have a Big Impact
These tests work by looking for genes that control drug metabolism.
“You have several different drug-metabolizing enzymes in your liver,” Dr. Cicali explained. “Pharmacogenetic tests look for gene variants that encode for these enzymes. If you’re an ultrarapid metabolizer, you have more of the enzymes that metabolize certain drugs, and there could be a risk the drug won’t work well because it doesn’t stay in the body long enough. On the other end of the spectrum, poor metabolizers have low levels of enzymes that affect certain drugs, so the drugs hang around longer and cause side effects.”
While pharmacogenetics is still considered an emerging science, it’s becoming more mainstream as test prices drop, insurance coverage expands, and an explosion of new research boosts understanding of gene-drug interactions, Dr. Wiisanen said.
Politicians are trying to extend its reach, too. The Right Drug Dose Now Act of 2024, introduced in Congress in late March, aims to accelerate the use of PGx by boosting public awareness and by inserting PGx test results into consumers’ electronic health records. (Though a similar bill died in a US House subcommittee in 2023.)
“The use of pharmacogenetic data to guide prescribing is growing rapidly,” Dr. Wiisanen said. “It’s becoming a routine part of drug therapy for many medications.”
What the Research Shows
When researchers sequenced the DNA of more than 10,000 Mayo Clinic patients, they made a discovery that might surprise many Americans: Gene variants that affect the effectiveness and safety of widely used drugs are not rare glitches. More than 99% of study participants had at least one. And 79% had three or more.
The Mayo-Baylor RIGHT 10K Study — one of the largest PGx studies ever conducted in the United States — looked at 77 gene variants, most involved with drug metabolism in the liver. Researchers focused closely on 13 with extensively studied, gene-based prescribing recommendations for 21 drugs including antidepressants, statins, pain killers, anticlotting medications for heart conditions, HIV treatments, chemotherapy agents, and antirejection drugs for organ transplants.
When researchers added participants’ genetic data to their electronic health records, they also sent semi-urgent alerts, which are alerts with the potential for severe harm, to the clinicians of 61 study volunteers. Over half changed patients’ drugs or doses.
The changes made a difference. One participant taking the pain drug tramadol turned out to be a poor metabolizer and was having dizzy spells because blood levels of the drug stayed high for long periods. Stopping tramadol stopped the dizziness. A participant taking escitalopram plus bupropion for major depression found out that the combo was likely ineffective because they metabolized escitalopram rapidly. A switch to a higher dose of bupropion alone put their depression into full remission.
“So many factors play into how you respond to medications,” said Mayo Clinic pharmacogenomics pharmacist Jessica Wright, PharmD, BCACP, one of the study authors. “Genetics is one of those pieces. Pharmacogenetic testing can reveal things that clinicians may not have been aware of or could help explain a patient’s exaggerated side effect.”
Pharmacogenetics is also called pharmacogenomics. The terms are often used interchangeably, even among PGx pharmacists, though the first refers to how individual genes influence drug response and the second to the effects of multiple genes, said Kelly E. Caudle, PharmD, PhD, an associate member of the Department of Pharmacy and Pharmaceutical Sciences at St. Jude Children’s Research Hospital in Memphis, Tennessee. Dr. Caudle is also co-principal investigator and director of the National Institutes of Health (NIH)-funded Clinical Pharmacogenetics Implementation Consortium (CPIC). The group creates, publishes, and posts evidence-based clinical practice guidelines for drugs with well-researched PGx influences.
By any name, PGx may help explain, predict, and sidestep unpredictable responses to a variety of drugs:
- In a 2023 multicenter study of 6944 people from seven European countries in The Lancet, those given customized drug treatments based on a 12-gene PGx panel had 30% fewer side effects than those who didn’t get this personalized prescribing. People in the study were being treated for cancer, heart disease, and mental health issues, among other conditions.
- In a 2023 from China’s Tongji University, Shanghai, of 650 survivors of strokes and transient ischemic attacks, those whose antiplatelet drugs (such as clopidogrel) were customized based on PGx testing had a lower risk for stroke and other vascular events in the next 90 days. The study was published in Frontiers in Pharmacology.
- In a University of Pennsylvania of 1944 adults with major depression, published in the Journal of the American Medical Association, those whose antidepressants were guided by PGx test results were 28% more likely to go into remission during the first 24 weeks of treatment than those in a control group. But by 24 weeks, equal numbers were in remission. A 2023 Chinese of 11 depression studies, published in BMC Psychiatry, came to a similar conclusion: PGx-guided antidepressant prescriptions may help people feel better quicker, perhaps by avoiding some of the usual trial-and-error of different depression drugs.
PGx checks are already strongly recommended or considered routine before some medications are prescribed. These include abacavir (Ziagen), an antiviral treatment for HIV that can have severe side effects in people with one gene variant.
The US Food and Drug Administration (FDA) recommends genetic testing for people with colon cancer before starting the drug irinotecan (Camptosar), which can cause severe diarrhea and raise infection risk in people with a gene variant that slows the drug’s elimination from the body.
Genetic testing is also recommended by the FDA for people with acute lymphoblastic leukemia before receiving the chemotherapy drug mercaptopurine (Purinethol) because a gene variant that affects drug processing can trigger serious side effects and raise the risk for infection at standard dosages.
“One of the key benefits of pharmacogenomic testing is in preventing adverse drug reactions,” Dr. Wiisanen said. “Testing of the thiopurine methyltransferase enzyme to guide dosing with 6-mercaptopurine or azathioprine can help prevent myelosuppression, a serious adverse drug reaction caused by lower production of blood cells in bone marrow.”
When, Why, and How to Test
“A family doctor should consider a PGx test if a patient is planning on taking a medication for which there is a CPIC guideline with a dosing recommendation,” said Teri Klein, PhD, professor of biomedical data science at Stanford University in California, and principal investigator at PharmGKB, an online resource funded by the NIH that provides information for healthcare practitioners, researchers, and consumers about PGx. Affiliated with CPIC, it’s based at Stanford University.
You might also consider it for patients already on a drug who are “not responding or experiencing side effects,” Dr. Caudle said.
Here’s how four PGx experts suggest consumers and physicians approach this option.
Find a Test
More than a dozen PGx tests are on the market — some only a provider can order, others a consumer can order after a review by their provider or by a provider from the testing company. Some of the tests (using saliva) may be administered at home, while blood tests are done in a doctor’s office or laboratory. Companies that offer the tests include ARUP Laboratories, Genomind, Labcorp, Mayo Clinic Laboratories, Myriad Neuroscience, Precision Sciences Inc., Tempus, and OneOme, but there are many others online. (Keep in mind that many laboratories offer “lab-developed tests” — created for use in a single laboratory — but these can be harder to verify. “The FDA regulates pharmacogenomic testing in laboratories,” Dr. Wiisanen said, “but many of the regulatory parameters are still being defined.”)
Because PGx is so new, there is no official list of recommended tests. So you’ll have to do a little homework. You can check that the laboratory is accredited by searching for it in the NIH Genetic Testing Laboratory Registry database. Beyond that, you’ll have to consult other evidence-based resources to confirm that the drug you’re interested in has research-backed data about specific gene variants (alleles) that affect metabolism as well as research-based clinical guidelines for using PGx results to make prescribing decisions.
The CPIC’s guidelines include dosing and alternate drug recommendations for more than 100 antidepressants, chemotherapy drugs, the antiplatelet and anticlotting drugs clopidogrel and warfarin, local anesthetics, antivirals and antibacterials, pain killers and anti-inflammatory drugs, and some cholesterol-lowering statins such as lovastatin and fluvastatin.
For help figuring out if a test looks for the right gene variants, Dr. Caudle and Dr. Wright recommended checking with the Association for Molecular Pathology’s website. The group published a brief list of best practices for pharmacogenomic testing in 2019. And it keeps a list of gene variants (alleles) that should be included in tests. Clinical guidelines from the CPIC and other groups, available on PharmGKB’s website, also list gene variants that affect the metabolism of the drug.
Consider Cost
The price tag for a test is typically several hundred dollars — but it can run as high as $1000-$2500. And health insurance doesn’t always pick up the tab.
In a 2023 University of Florida study of more than 1000 insurance claims for PGx testing, the number reimbursed varied from 72% for a pain diagnosis to 52% for cardiology to 46% for psychiatry.
Medicare covers some PGx testing when a consumer and their providers meet certain criteria, including whether a drug being considered has a significant gene-drug interaction. California’s Medi-Cal health insurance program covers PGx as do Medicaid programs in some states, including Arkansas and Rhode Island. You can find state-by-state coverage information on the Genetics Policy Hub’s website.
Understand the Results
As more insurers cover PGx, Dr. Klein and Dr. Wiisanen say the field will grow and more providers will use it to inform prescribing. But some health systems aren’t waiting.
In addition to UF Health’s MyRx, PGx is part of personalized medicine programs at the University of Pennsylvania in Philadelphia, Endeavor Health in Chicago, the Mayo Clinic, the University of California, San Francisco, Sanford Health in Sioux Falls, South Dakota, and St. Jude Children’s Research Hospital in Memphis, Tennessee.
Beyond testing, they offer a very useful service: A consult with a pharmacogenetics pharmacist to review the results and explain what they mean for a consumer’s current and future medications.
Physicians and curious consumers can also consult CPIC’s guidelines, which give recommendations about how to interpret the results of a PGx test, said Dr. Klein, a co-principal investigator at CPIC. CPIC has a grading system for both the evidence that supports the recommendation (high, moderate, or weak) and the recommendation itself (strong, moderate, or optional).
Currently, labeling for 456 prescription drugs sold in the United States includes some type of PGx information, according to the FDA’s Table of Pharmacogenomic Biomarkers in Drug Labeling and an annotated guide from PharmGKB.
Just 108 drug labels currently tell doctors and patients what to do with the information — such as requiring or suggesting testing or offering prescribing recommendations, according to PharmGKB. In contrast, PharmGKB’s online resources include evidence-based clinical guidelines for 201 drugs from CPIC and from professional PGx societies in the Netherlands, Canada, France, and elsewhere.
Consumers and physicians can also look for a pharmacist with pharmacogenetics training in their area or through a nearby medical center to learn more, Dr. Wright suggested. And while consumers can test without working with their own physician, the experts advise against it. Don’t stop or change the dose of medications you already take on your own, they say . And do work with your primary care practitioner or specialist to get tested and understand how the results fit into the bigger picture of how your body responds to your medications.
A version of this article appeared on Medscape.com.
What if there were tests that could tell you whether the following drugs were a good match for your patients: Antidepressants, statins, painkillers, anticlotting medicines, chemotherapy agents, HIV treatments, organ transplant antirejection drugs, proton pump inhibitors for heartburn, and more?
That’s quite a list. And that’s pharmacogenetics, testing patients for genetic differences that affect how well a given drug will work for them and what kind of side effects to expect.
“About 9 out of 10 people will have a genetic difference in their DNA that can impact how they respond to common medications,” said Emily J. Cicali, PharmD, a clinical associate at the University of Florida College of Pharmacy, Gainesville.
Dr. Cicali is the clinical director of UF Health’s MyRx, a virtual program that gives Florida and New Jersey residents access to pharmacogenetic (PGx) tests plus expert interpretation by the health system’s pharmacists. Genetic factors are thought to contribute to about 25% or more of inappropriate drug responses or adverse events, said Kristin Wiisanen, PharmD, dean of the College of Pharmacy at Rosalind Franklin University of Medicine and Science in North Chicago.
Dr. Cicali said.
Through a cheek swab or blood sample, the MyRx program — and a growing number of health system programs, doctors’ offices, and home tests available across the United States — gives consumers a window on inherited gene variants that can affect how their body activates, metabolizes, and clears away medications from a long list of widely used drugs.
Why PGx Tests Can Have a Big Impact
These tests work by looking for genes that control drug metabolism.
“You have several different drug-metabolizing enzymes in your liver,” Dr. Cicali explained. “Pharmacogenetic tests look for gene variants that encode for these enzymes. If you’re an ultrarapid metabolizer, you have more of the enzymes that metabolize certain drugs, and there could be a risk the drug won’t work well because it doesn’t stay in the body long enough. On the other end of the spectrum, poor metabolizers have low levels of enzymes that affect certain drugs, so the drugs hang around longer and cause side effects.”
While pharmacogenetics is still considered an emerging science, it’s becoming more mainstream as test prices drop, insurance coverage expands, and an explosion of new research boosts understanding of gene-drug interactions, Dr. Wiisanen said.
Politicians are trying to extend its reach, too. The Right Drug Dose Now Act of 2024, introduced in Congress in late March, aims to accelerate the use of PGx by boosting public awareness and by inserting PGx test results into consumers’ electronic health records. (Though a similar bill died in a US House subcommittee in 2023.)
“The use of pharmacogenetic data to guide prescribing is growing rapidly,” Dr. Wiisanen said. “It’s becoming a routine part of drug therapy for many medications.”
What the Research Shows
When researchers sequenced the DNA of more than 10,000 Mayo Clinic patients, they made a discovery that might surprise many Americans: Gene variants that affect the effectiveness and safety of widely used drugs are not rare glitches. More than 99% of study participants had at least one. And 79% had three or more.
The Mayo-Baylor RIGHT 10K Study — one of the largest PGx studies ever conducted in the United States — looked at 77 gene variants, most involved with drug metabolism in the liver. Researchers focused closely on 13 with extensively studied, gene-based prescribing recommendations for 21 drugs including antidepressants, statins, pain killers, anticlotting medications for heart conditions, HIV treatments, chemotherapy agents, and antirejection drugs for organ transplants.
When researchers added participants’ genetic data to their electronic health records, they also sent semi-urgent alerts, which are alerts with the potential for severe harm, to the clinicians of 61 study volunteers. Over half changed patients’ drugs or doses.
The changes made a difference. One participant taking the pain drug tramadol turned out to be a poor metabolizer and was having dizzy spells because blood levels of the drug stayed high for long periods. Stopping tramadol stopped the dizziness. A participant taking escitalopram plus bupropion for major depression found out that the combo was likely ineffective because they metabolized escitalopram rapidly. A switch to a higher dose of bupropion alone put their depression into full remission.
“So many factors play into how you respond to medications,” said Mayo Clinic pharmacogenomics pharmacist Jessica Wright, PharmD, BCACP, one of the study authors. “Genetics is one of those pieces. Pharmacogenetic testing can reveal things that clinicians may not have been aware of or could help explain a patient’s exaggerated side effect.”
Pharmacogenetics is also called pharmacogenomics. The terms are often used interchangeably, even among PGx pharmacists, though the first refers to how individual genes influence drug response and the second to the effects of multiple genes, said Kelly E. Caudle, PharmD, PhD, an associate member of the Department of Pharmacy and Pharmaceutical Sciences at St. Jude Children’s Research Hospital in Memphis, Tennessee. Dr. Caudle is also co-principal investigator and director of the National Institutes of Health (NIH)-funded Clinical Pharmacogenetics Implementation Consortium (CPIC). The group creates, publishes, and posts evidence-based clinical practice guidelines for drugs with well-researched PGx influences.
By any name, PGx may help explain, predict, and sidestep unpredictable responses to a variety of drugs:
- In a 2023 multicenter study of 6944 people from seven European countries in The Lancet, those given customized drug treatments based on a 12-gene PGx panel had 30% fewer side effects than those who didn’t get this personalized prescribing. People in the study were being treated for cancer, heart disease, and mental health issues, among other conditions.
- In a 2023 from China’s Tongji University, Shanghai, of 650 survivors of strokes and transient ischemic attacks, those whose antiplatelet drugs (such as clopidogrel) were customized based on PGx testing had a lower risk for stroke and other vascular events in the next 90 days. The study was published in Frontiers in Pharmacology.
- In a University of Pennsylvania of 1944 adults with major depression, published in the Journal of the American Medical Association, those whose antidepressants were guided by PGx test results were 28% more likely to go into remission during the first 24 weeks of treatment than those in a control group. But by 24 weeks, equal numbers were in remission. A 2023 Chinese of 11 depression studies, published in BMC Psychiatry, came to a similar conclusion: PGx-guided antidepressant prescriptions may help people feel better quicker, perhaps by avoiding some of the usual trial-and-error of different depression drugs.
PGx checks are already strongly recommended or considered routine before some medications are prescribed. These include abacavir (Ziagen), an antiviral treatment for HIV that can have severe side effects in people with one gene variant.
The US Food and Drug Administration (FDA) recommends genetic testing for people with colon cancer before starting the drug irinotecan (Camptosar), which can cause severe diarrhea and raise infection risk in people with a gene variant that slows the drug’s elimination from the body.
Genetic testing is also recommended by the FDA for people with acute lymphoblastic leukemia before receiving the chemotherapy drug mercaptopurine (Purinethol) because a gene variant that affects drug processing can trigger serious side effects and raise the risk for infection at standard dosages.
“One of the key benefits of pharmacogenomic testing is in preventing adverse drug reactions,” Dr. Wiisanen said. “Testing of the thiopurine methyltransferase enzyme to guide dosing with 6-mercaptopurine or azathioprine can help prevent myelosuppression, a serious adverse drug reaction caused by lower production of blood cells in bone marrow.”
When, Why, and How to Test
“A family doctor should consider a PGx test if a patient is planning on taking a medication for which there is a CPIC guideline with a dosing recommendation,” said Teri Klein, PhD, professor of biomedical data science at Stanford University in California, and principal investigator at PharmGKB, an online resource funded by the NIH that provides information for healthcare practitioners, researchers, and consumers about PGx. Affiliated with CPIC, it’s based at Stanford University.
You might also consider it for patients already on a drug who are “not responding or experiencing side effects,” Dr. Caudle said.
Here’s how four PGx experts suggest consumers and physicians approach this option.
Find a Test
More than a dozen PGx tests are on the market — some only a provider can order, others a consumer can order after a review by their provider or by a provider from the testing company. Some of the tests (using saliva) may be administered at home, while blood tests are done in a doctor’s office or laboratory. Companies that offer the tests include ARUP Laboratories, Genomind, Labcorp, Mayo Clinic Laboratories, Myriad Neuroscience, Precision Sciences Inc., Tempus, and OneOme, but there are many others online. (Keep in mind that many laboratories offer “lab-developed tests” — created for use in a single laboratory — but these can be harder to verify. “The FDA regulates pharmacogenomic testing in laboratories,” Dr. Wiisanen said, “but many of the regulatory parameters are still being defined.”)
Because PGx is so new, there is no official list of recommended tests. So you’ll have to do a little homework. You can check that the laboratory is accredited by searching for it in the NIH Genetic Testing Laboratory Registry database. Beyond that, you’ll have to consult other evidence-based resources to confirm that the drug you’re interested in has research-backed data about specific gene variants (alleles) that affect metabolism as well as research-based clinical guidelines for using PGx results to make prescribing decisions.
The CPIC’s guidelines include dosing and alternate drug recommendations for more than 100 antidepressants, chemotherapy drugs, the antiplatelet and anticlotting drugs clopidogrel and warfarin, local anesthetics, antivirals and antibacterials, pain killers and anti-inflammatory drugs, and some cholesterol-lowering statins such as lovastatin and fluvastatin.
For help figuring out if a test looks for the right gene variants, Dr. Caudle and Dr. Wright recommended checking with the Association for Molecular Pathology’s website. The group published a brief list of best practices for pharmacogenomic testing in 2019. And it keeps a list of gene variants (alleles) that should be included in tests. Clinical guidelines from the CPIC and other groups, available on PharmGKB’s website, also list gene variants that affect the metabolism of the drug.
Consider Cost
The price tag for a test is typically several hundred dollars — but it can run as high as $1000-$2500. And health insurance doesn’t always pick up the tab.
In a 2023 University of Florida study of more than 1000 insurance claims for PGx testing, the number reimbursed varied from 72% for a pain diagnosis to 52% for cardiology to 46% for psychiatry.
Medicare covers some PGx testing when a consumer and their providers meet certain criteria, including whether a drug being considered has a significant gene-drug interaction. California’s Medi-Cal health insurance program covers PGx as do Medicaid programs in some states, including Arkansas and Rhode Island. You can find state-by-state coverage information on the Genetics Policy Hub’s website.
Understand the Results
As more insurers cover PGx, Dr. Klein and Dr. Wiisanen say the field will grow and more providers will use it to inform prescribing. But some health systems aren’t waiting.
In addition to UF Health’s MyRx, PGx is part of personalized medicine programs at the University of Pennsylvania in Philadelphia, Endeavor Health in Chicago, the Mayo Clinic, the University of California, San Francisco, Sanford Health in Sioux Falls, South Dakota, and St. Jude Children’s Research Hospital in Memphis, Tennessee.
Beyond testing, they offer a very useful service: A consult with a pharmacogenetics pharmacist to review the results and explain what they mean for a consumer’s current and future medications.
Physicians and curious consumers can also consult CPIC’s guidelines, which give recommendations about how to interpret the results of a PGx test, said Dr. Klein, a co-principal investigator at CPIC. CPIC has a grading system for both the evidence that supports the recommendation (high, moderate, or weak) and the recommendation itself (strong, moderate, or optional).
Currently, labeling for 456 prescription drugs sold in the United States includes some type of PGx information, according to the FDA’s Table of Pharmacogenomic Biomarkers in Drug Labeling and an annotated guide from PharmGKB.
Just 108 drug labels currently tell doctors and patients what to do with the information — such as requiring or suggesting testing or offering prescribing recommendations, according to PharmGKB. In contrast, PharmGKB’s online resources include evidence-based clinical guidelines for 201 drugs from CPIC and from professional PGx societies in the Netherlands, Canada, France, and elsewhere.
Consumers and physicians can also look for a pharmacist with pharmacogenetics training in their area or through a nearby medical center to learn more, Dr. Wright suggested. And while consumers can test without working with their own physician, the experts advise against it. Don’t stop or change the dose of medications you already take on your own, they say . And do work with your primary care practitioner or specialist to get tested and understand how the results fit into the bigger picture of how your body responds to your medications.
A version of this article appeared on Medscape.com.
What if there were tests that could tell you whether the following drugs were a good match for your patients: Antidepressants, statins, painkillers, anticlotting medicines, chemotherapy agents, HIV treatments, organ transplant antirejection drugs, proton pump inhibitors for heartburn, and more?
That’s quite a list. And that’s pharmacogenetics, testing patients for genetic differences that affect how well a given drug will work for them and what kind of side effects to expect.
“About 9 out of 10 people will have a genetic difference in their DNA that can impact how they respond to common medications,” said Emily J. Cicali, PharmD, a clinical associate at the University of Florida College of Pharmacy, Gainesville.
Dr. Cicali is the clinical director of UF Health’s MyRx, a virtual program that gives Florida and New Jersey residents access to pharmacogenetic (PGx) tests plus expert interpretation by the health system’s pharmacists. Genetic factors are thought to contribute to about 25% or more of inappropriate drug responses or adverse events, said Kristin Wiisanen, PharmD, dean of the College of Pharmacy at Rosalind Franklin University of Medicine and Science in North Chicago.
Dr. Cicali said.
Through a cheek swab or blood sample, the MyRx program — and a growing number of health system programs, doctors’ offices, and home tests available across the United States — gives consumers a window on inherited gene variants that can affect how their body activates, metabolizes, and clears away medications from a long list of widely used drugs.
Why PGx Tests Can Have a Big Impact
These tests work by looking for genes that control drug metabolism.
“You have several different drug-metabolizing enzymes in your liver,” Dr. Cicali explained. “Pharmacogenetic tests look for gene variants that encode for these enzymes. If you’re an ultrarapid metabolizer, you have more of the enzymes that metabolize certain drugs, and there could be a risk the drug won’t work well because it doesn’t stay in the body long enough. On the other end of the spectrum, poor metabolizers have low levels of enzymes that affect certain drugs, so the drugs hang around longer and cause side effects.”
While pharmacogenetics is still considered an emerging science, it’s becoming more mainstream as test prices drop, insurance coverage expands, and an explosion of new research boosts understanding of gene-drug interactions, Dr. Wiisanen said.
Politicians are trying to extend its reach, too. The Right Drug Dose Now Act of 2024, introduced in Congress in late March, aims to accelerate the use of PGx by boosting public awareness and by inserting PGx test results into consumers’ electronic health records. (Though a similar bill died in a US House subcommittee in 2023.)
“The use of pharmacogenetic data to guide prescribing is growing rapidly,” Dr. Wiisanen said. “It’s becoming a routine part of drug therapy for many medications.”
What the Research Shows
When researchers sequenced the DNA of more than 10,000 Mayo Clinic patients, they made a discovery that might surprise many Americans: Gene variants that affect the effectiveness and safety of widely used drugs are not rare glitches. More than 99% of study participants had at least one. And 79% had three or more.
The Mayo-Baylor RIGHT 10K Study — one of the largest PGx studies ever conducted in the United States — looked at 77 gene variants, most involved with drug metabolism in the liver. Researchers focused closely on 13 with extensively studied, gene-based prescribing recommendations for 21 drugs including antidepressants, statins, pain killers, anticlotting medications for heart conditions, HIV treatments, chemotherapy agents, and antirejection drugs for organ transplants.
When researchers added participants’ genetic data to their electronic health records, they also sent semi-urgent alerts, which are alerts with the potential for severe harm, to the clinicians of 61 study volunteers. Over half changed patients’ drugs or doses.
The changes made a difference. One participant taking the pain drug tramadol turned out to be a poor metabolizer and was having dizzy spells because blood levels of the drug stayed high for long periods. Stopping tramadol stopped the dizziness. A participant taking escitalopram plus bupropion for major depression found out that the combo was likely ineffective because they metabolized escitalopram rapidly. A switch to a higher dose of bupropion alone put their depression into full remission.
“So many factors play into how you respond to medications,” said Mayo Clinic pharmacogenomics pharmacist Jessica Wright, PharmD, BCACP, one of the study authors. “Genetics is one of those pieces. Pharmacogenetic testing can reveal things that clinicians may not have been aware of or could help explain a patient’s exaggerated side effect.”
Pharmacogenetics is also called pharmacogenomics. The terms are often used interchangeably, even among PGx pharmacists, though the first refers to how individual genes influence drug response and the second to the effects of multiple genes, said Kelly E. Caudle, PharmD, PhD, an associate member of the Department of Pharmacy and Pharmaceutical Sciences at St. Jude Children’s Research Hospital in Memphis, Tennessee. Dr. Caudle is also co-principal investigator and director of the National Institutes of Health (NIH)-funded Clinical Pharmacogenetics Implementation Consortium (CPIC). The group creates, publishes, and posts evidence-based clinical practice guidelines for drugs with well-researched PGx influences.
By any name, PGx may help explain, predict, and sidestep unpredictable responses to a variety of drugs:
- In a 2023 multicenter study of 6944 people from seven European countries in The Lancet, those given customized drug treatments based on a 12-gene PGx panel had 30% fewer side effects than those who didn’t get this personalized prescribing. People in the study were being treated for cancer, heart disease, and mental health issues, among other conditions.
- In a 2023 from China’s Tongji University, Shanghai, of 650 survivors of strokes and transient ischemic attacks, those whose antiplatelet drugs (such as clopidogrel) were customized based on PGx testing had a lower risk for stroke and other vascular events in the next 90 days. The study was published in Frontiers in Pharmacology.
- In a University of Pennsylvania of 1944 adults with major depression, published in the Journal of the American Medical Association, those whose antidepressants were guided by PGx test results were 28% more likely to go into remission during the first 24 weeks of treatment than those in a control group. But by 24 weeks, equal numbers were in remission. A 2023 Chinese of 11 depression studies, published in BMC Psychiatry, came to a similar conclusion: PGx-guided antidepressant prescriptions may help people feel better quicker, perhaps by avoiding some of the usual trial-and-error of different depression drugs.
PGx checks are already strongly recommended or considered routine before some medications are prescribed. These include abacavir (Ziagen), an antiviral treatment for HIV that can have severe side effects in people with one gene variant.
The US Food and Drug Administration (FDA) recommends genetic testing for people with colon cancer before starting the drug irinotecan (Camptosar), which can cause severe diarrhea and raise infection risk in people with a gene variant that slows the drug’s elimination from the body.
Genetic testing is also recommended by the FDA for people with acute lymphoblastic leukemia before receiving the chemotherapy drug mercaptopurine (Purinethol) because a gene variant that affects drug processing can trigger serious side effects and raise the risk for infection at standard dosages.
“One of the key benefits of pharmacogenomic testing is in preventing adverse drug reactions,” Dr. Wiisanen said. “Testing of the thiopurine methyltransferase enzyme to guide dosing with 6-mercaptopurine or azathioprine can help prevent myelosuppression, a serious adverse drug reaction caused by lower production of blood cells in bone marrow.”
When, Why, and How to Test
“A family doctor should consider a PGx test if a patient is planning on taking a medication for which there is a CPIC guideline with a dosing recommendation,” said Teri Klein, PhD, professor of biomedical data science at Stanford University in California, and principal investigator at PharmGKB, an online resource funded by the NIH that provides information for healthcare practitioners, researchers, and consumers about PGx. Affiliated with CPIC, it’s based at Stanford University.
You might also consider it for patients already on a drug who are “not responding or experiencing side effects,” Dr. Caudle said.
Here’s how four PGx experts suggest consumers and physicians approach this option.
Find a Test
More than a dozen PGx tests are on the market — some only a provider can order, others a consumer can order after a review by their provider or by a provider from the testing company. Some of the tests (using saliva) may be administered at home, while blood tests are done in a doctor’s office or laboratory. Companies that offer the tests include ARUP Laboratories, Genomind, Labcorp, Mayo Clinic Laboratories, Myriad Neuroscience, Precision Sciences Inc., Tempus, and OneOme, but there are many others online. (Keep in mind that many laboratories offer “lab-developed tests” — created for use in a single laboratory — but these can be harder to verify. “The FDA regulates pharmacogenomic testing in laboratories,” Dr. Wiisanen said, “but many of the regulatory parameters are still being defined.”)
Because PGx is so new, there is no official list of recommended tests. So you’ll have to do a little homework. You can check that the laboratory is accredited by searching for it in the NIH Genetic Testing Laboratory Registry database. Beyond that, you’ll have to consult other evidence-based resources to confirm that the drug you’re interested in has research-backed data about specific gene variants (alleles) that affect metabolism as well as research-based clinical guidelines for using PGx results to make prescribing decisions.
The CPIC’s guidelines include dosing and alternate drug recommendations for more than 100 antidepressants, chemotherapy drugs, the antiplatelet and anticlotting drugs clopidogrel and warfarin, local anesthetics, antivirals and antibacterials, pain killers and anti-inflammatory drugs, and some cholesterol-lowering statins such as lovastatin and fluvastatin.
For help figuring out if a test looks for the right gene variants, Dr. Caudle and Dr. Wright recommended checking with the Association for Molecular Pathology’s website. The group published a brief list of best practices for pharmacogenomic testing in 2019. And it keeps a list of gene variants (alleles) that should be included in tests. Clinical guidelines from the CPIC and other groups, available on PharmGKB’s website, also list gene variants that affect the metabolism of the drug.
Consider Cost
The price tag for a test is typically several hundred dollars — but it can run as high as $1000-$2500. And health insurance doesn’t always pick up the tab.
In a 2023 University of Florida study of more than 1000 insurance claims for PGx testing, the number reimbursed varied from 72% for a pain diagnosis to 52% for cardiology to 46% for psychiatry.
Medicare covers some PGx testing when a consumer and their providers meet certain criteria, including whether a drug being considered has a significant gene-drug interaction. California’s Medi-Cal health insurance program covers PGx as do Medicaid programs in some states, including Arkansas and Rhode Island. You can find state-by-state coverage information on the Genetics Policy Hub’s website.
Understand the Results
As more insurers cover PGx, Dr. Klein and Dr. Wiisanen say the field will grow and more providers will use it to inform prescribing. But some health systems aren’t waiting.
In addition to UF Health’s MyRx, PGx is part of personalized medicine programs at the University of Pennsylvania in Philadelphia, Endeavor Health in Chicago, the Mayo Clinic, the University of California, San Francisco, Sanford Health in Sioux Falls, South Dakota, and St. Jude Children’s Research Hospital in Memphis, Tennessee.
Beyond testing, they offer a very useful service: A consult with a pharmacogenetics pharmacist to review the results and explain what they mean for a consumer’s current and future medications.
Physicians and curious consumers can also consult CPIC’s guidelines, which give recommendations about how to interpret the results of a PGx test, said Dr. Klein, a co-principal investigator at CPIC. CPIC has a grading system for both the evidence that supports the recommendation (high, moderate, or weak) and the recommendation itself (strong, moderate, or optional).
Currently, labeling for 456 prescription drugs sold in the United States includes some type of PGx information, according to the FDA’s Table of Pharmacogenomic Biomarkers in Drug Labeling and an annotated guide from PharmGKB.
Just 108 drug labels currently tell doctors and patients what to do with the information — such as requiring or suggesting testing or offering prescribing recommendations, according to PharmGKB. In contrast, PharmGKB’s online resources include evidence-based clinical guidelines for 201 drugs from CPIC and from professional PGx societies in the Netherlands, Canada, France, and elsewhere.
Consumers and physicians can also look for a pharmacist with pharmacogenetics training in their area or through a nearby medical center to learn more, Dr. Wright suggested. And while consumers can test without working with their own physician, the experts advise against it. Don’t stop or change the dose of medications you already take on your own, they say . And do work with your primary care practitioner or specialist to get tested and understand how the results fit into the bigger picture of how your body responds to your medications.
A version of this article appeared on Medscape.com.
Recently Incarcerated Account for Nearly 20% of US Suicides
Nearly one-fifth of suicides in the United States occur in people who were incarcerated in the previous year, a new study showed.
An analysis of more than seven million recently incarcerated US adults revealed a nearly ninefold increased risk for suicide within 1 year after release and an almost sevenfold higher risk during the 2 years following release compared with nonincarcerated people.
The findings suggest that recent incarceration should be considered a risk factor for suicide, investigators said.
“Suicide prevention efforts should focus on people who have spent at least 1 night in jail in the past year,” investigator Ted R. Miller, PhD, of the Pacific Institute for Research and Evaluation, Beltsville, Maryland, and Curtin University School of Public Health, Silver Spring, Maryland, and colleagues wrote. “Health systems could develop infrastructure to identify these high-risk adults and provide community-based suicide screening and prevention.”
The study was published online on May 10, 2024, in JAMA Network Open.
To address the lack of data on suicide risk after recent incarceration, researchers used estimates from meta-analyses and jail census counts.
In 2019, a little more than seven million people (77% male), or 2.8% of the US adult population, were released from US jails at least once, typically after brief pretrial stays. Of those, 9121 died by suicide.
Compared with suicide risk in people who had never been incarcerated, risk was nearly nine times higher within 1 year of release (relative risk [RR], 8.95; 95% CI, 7.21-10.69) and nearly seven times higher during the second year after release (RR, 6.98; 95% CI, 4.21-9.76), researchers found.
Over a quarter (27%) of all adult suicides in the United States occurred in formerly incarcerated people within 2 years of jail release, and one fifth occurred within 1 year of release.
“The results suggest that better integration of suicide risk detection and prevention across health and criminal justice systems is critical to advancing population-level suicide-prevention efforts,” the authors wrote.
High volumes of jail admissions and discharges, short jail stays, and understaffing limit the capacity of many jails to coordinate care with outside health agencies, researchers acknowledged.
“The suicide rate after the return to the community after jail stay is higher than the suicide rate in jail, but local jails have limited capacity to coordinate postrelease health activities,” authors wrote. “Thus, a comprehensive approach to reducing the population-level US suicide rate would include health systems screening their subscribers or patients for recent arrest or police involvement and reaching out to those recently released to prevent suicide.”
In an accompanying editorial, Stuart A. Kinner, PhD, and Rohan Borschmann, PhD, both with the Melbourne School of Population and Global Health, University of Melbourne, Australia, noted that people who experience incarceration “are distinguished by complex health problems that necessitate coordinated, multisectoral care.”
“Miller and colleagues’ findings provide further evidence that incarceration serves as an important marker for disease vulnerability and risk,” Dr. Kinner and Borschmann wrote. “Yet, all too often, the health care provided to these individuals before, during, and after incarceration is underresourced, interrupted, and fragmented.”
Coordinating care for recently incarcerated individuals will require a coordinated effort by all stakeholders, including those in the criminal justice system, they argued.
“The systems that incarcerate 7.1 million people in the United States each year should not be given a get-out-of-jail-free card,” they wrote.
This study was supported by grants from the National Institutes of Mental Health (NIMH)/National Institutes of Health (NIH) and from the National Center for Health and Justice Integration for Suicide Prevention. Dr. Miller reported receiving grants from the NIMH/NIH with his employer as a subcontractor during the conduct of the study and a contract from government plaintiffs in Opioid Litigation: Epidemiology/Abatement Planning outside the submitted work. The other authors’ disclosures are listed on the original paper. Dr. Kinner and Borschmann declared no relevant financial relationships.
A version of this article appeared on Medscape.com.
Nearly one-fifth of suicides in the United States occur in people who were incarcerated in the previous year, a new study showed.
An analysis of more than seven million recently incarcerated US adults revealed a nearly ninefold increased risk for suicide within 1 year after release and an almost sevenfold higher risk during the 2 years following release compared with nonincarcerated people.
The findings suggest that recent incarceration should be considered a risk factor for suicide, investigators said.
“Suicide prevention efforts should focus on people who have spent at least 1 night in jail in the past year,” investigator Ted R. Miller, PhD, of the Pacific Institute for Research and Evaluation, Beltsville, Maryland, and Curtin University School of Public Health, Silver Spring, Maryland, and colleagues wrote. “Health systems could develop infrastructure to identify these high-risk adults and provide community-based suicide screening and prevention.”
The study was published online on May 10, 2024, in JAMA Network Open.
To address the lack of data on suicide risk after recent incarceration, researchers used estimates from meta-analyses and jail census counts.
In 2019, a little more than seven million people (77% male), or 2.8% of the US adult population, were released from US jails at least once, typically after brief pretrial stays. Of those, 9121 died by suicide.
Compared with suicide risk in people who had never been incarcerated, risk was nearly nine times higher within 1 year of release (relative risk [RR], 8.95; 95% CI, 7.21-10.69) and nearly seven times higher during the second year after release (RR, 6.98; 95% CI, 4.21-9.76), researchers found.
Over a quarter (27%) of all adult suicides in the United States occurred in formerly incarcerated people within 2 years of jail release, and one fifth occurred within 1 year of release.
“The results suggest that better integration of suicide risk detection and prevention across health and criminal justice systems is critical to advancing population-level suicide-prevention efforts,” the authors wrote.
High volumes of jail admissions and discharges, short jail stays, and understaffing limit the capacity of many jails to coordinate care with outside health agencies, researchers acknowledged.
“The suicide rate after the return to the community after jail stay is higher than the suicide rate in jail, but local jails have limited capacity to coordinate postrelease health activities,” authors wrote. “Thus, a comprehensive approach to reducing the population-level US suicide rate would include health systems screening their subscribers or patients for recent arrest or police involvement and reaching out to those recently released to prevent suicide.”
In an accompanying editorial, Stuart A. Kinner, PhD, and Rohan Borschmann, PhD, both with the Melbourne School of Population and Global Health, University of Melbourne, Australia, noted that people who experience incarceration “are distinguished by complex health problems that necessitate coordinated, multisectoral care.”
“Miller and colleagues’ findings provide further evidence that incarceration serves as an important marker for disease vulnerability and risk,” Dr. Kinner and Borschmann wrote. “Yet, all too often, the health care provided to these individuals before, during, and after incarceration is underresourced, interrupted, and fragmented.”
Coordinating care for recently incarcerated individuals will require a coordinated effort by all stakeholders, including those in the criminal justice system, they argued.
“The systems that incarcerate 7.1 million people in the United States each year should not be given a get-out-of-jail-free card,” they wrote.
This study was supported by grants from the National Institutes of Mental Health (NIMH)/National Institutes of Health (NIH) and from the National Center for Health and Justice Integration for Suicide Prevention. Dr. Miller reported receiving grants from the NIMH/NIH with his employer as a subcontractor during the conduct of the study and a contract from government plaintiffs in Opioid Litigation: Epidemiology/Abatement Planning outside the submitted work. The other authors’ disclosures are listed on the original paper. Dr. Kinner and Borschmann declared no relevant financial relationships.
A version of this article appeared on Medscape.com.
Nearly one-fifth of suicides in the United States occur in people who were incarcerated in the previous year, a new study showed.
An analysis of more than seven million recently incarcerated US adults revealed a nearly ninefold increased risk for suicide within 1 year after release and an almost sevenfold higher risk during the 2 years following release compared with nonincarcerated people.
The findings suggest that recent incarceration should be considered a risk factor for suicide, investigators said.
“Suicide prevention efforts should focus on people who have spent at least 1 night in jail in the past year,” investigator Ted R. Miller, PhD, of the Pacific Institute for Research and Evaluation, Beltsville, Maryland, and Curtin University School of Public Health, Silver Spring, Maryland, and colleagues wrote. “Health systems could develop infrastructure to identify these high-risk adults and provide community-based suicide screening and prevention.”
The study was published online on May 10, 2024, in JAMA Network Open.
To address the lack of data on suicide risk after recent incarceration, researchers used estimates from meta-analyses and jail census counts.
In 2019, a little more than seven million people (77% male), or 2.8% of the US adult population, were released from US jails at least once, typically after brief pretrial stays. Of those, 9121 died by suicide.
Compared with suicide risk in people who had never been incarcerated, risk was nearly nine times higher within 1 year of release (relative risk [RR], 8.95; 95% CI, 7.21-10.69) and nearly seven times higher during the second year after release (RR, 6.98; 95% CI, 4.21-9.76), researchers found.
Over a quarter (27%) of all adult suicides in the United States occurred in formerly incarcerated people within 2 years of jail release, and one fifth occurred within 1 year of release.
“The results suggest that better integration of suicide risk detection and prevention across health and criminal justice systems is critical to advancing population-level suicide-prevention efforts,” the authors wrote.
High volumes of jail admissions and discharges, short jail stays, and understaffing limit the capacity of many jails to coordinate care with outside health agencies, researchers acknowledged.
“The suicide rate after the return to the community after jail stay is higher than the suicide rate in jail, but local jails have limited capacity to coordinate postrelease health activities,” authors wrote. “Thus, a comprehensive approach to reducing the population-level US suicide rate would include health systems screening their subscribers or patients for recent arrest or police involvement and reaching out to those recently released to prevent suicide.”
In an accompanying editorial, Stuart A. Kinner, PhD, and Rohan Borschmann, PhD, both with the Melbourne School of Population and Global Health, University of Melbourne, Australia, noted that people who experience incarceration “are distinguished by complex health problems that necessitate coordinated, multisectoral care.”
“Miller and colleagues’ findings provide further evidence that incarceration serves as an important marker for disease vulnerability and risk,” Dr. Kinner and Borschmann wrote. “Yet, all too often, the health care provided to these individuals before, during, and after incarceration is underresourced, interrupted, and fragmented.”
Coordinating care for recently incarcerated individuals will require a coordinated effort by all stakeholders, including those in the criminal justice system, they argued.
“The systems that incarcerate 7.1 million people in the United States each year should not be given a get-out-of-jail-free card,” they wrote.
This study was supported by grants from the National Institutes of Mental Health (NIMH)/National Institutes of Health (NIH) and from the National Center for Health and Justice Integration for Suicide Prevention. Dr. Miller reported receiving grants from the NIMH/NIH with his employer as a subcontractor during the conduct of the study and a contract from government plaintiffs in Opioid Litigation: Epidemiology/Abatement Planning outside the submitted work. The other authors’ disclosures are listed on the original paper. Dr. Kinner and Borschmann declared no relevant financial relationships.
A version of this article appeared on Medscape.com.
Greater Awareness Urged for Important, Overlooked Neuropsychiatric Symptoms of Lupus
Neuropsychiatric symptoms, including nightmares and hallucinatory “daymares,” may be a more important aspect of systemic lupus erythematosus (SLE) than formerly recognized, according to a qualitative mixed methods study published in The Lancet Discovery Science’s eClinicalMedicine. The findings suggested these neuropsychiatric symptoms can sometimes present as prodromal and other times act as an early warning system for a forthcoming flare.
“For clinicians, the key point is to be aware that neurological and psychiatric symptoms are much more common in patients with lupus and other autoimmune systemic rheumatic diseases than previously thought,” lead author Melanie Sloan, PhD, of the Department of Public Health and Primary Care at the University of Cambridge in England, told this news organization.
“If clinicians — and some do already — could all ask about and document these symptoms for each patient, the usual progression of symptoms in a flare can then be monitored, and patients could be supported and treated at an earlier stage,” Dr. Sloan said. “Another key point is to consider systemic autoimmune diseases at an early stage if a patient presents with multiple seemingly unconnected symptoms, which often include both physical and mental health symptoms.”
Alfred Kim, MD, PhD, associate professor of medicine in rheumatology at Washington University School of Medicine in St. Louis, Missouri, noted the difficulty of determining what neuropsychiatric symptoms may be linked to lupus vs those occurring independently or as part of a different condition.
“There is some controversy about whether the neuropsychiatric manifestations that we have long attributed to lupus actually are due to lupus,” Dr. Kim told this news organization. Dr. Kim was part of a group that published a review on potential mechanisms underlying neuropsychiatric symptoms described by a committee of the American College of Rheumatology.
Since that committee’s findings, “we have long assumed that if we saw these symptoms, the best explanation was lupus,” Dr. Kim said. “The problem is that, in the real world, we can see many of these manifestations in patients with lupus that do not get better with lupus meds. This opens up the very real possibility that another etiology is at play.”
Dr. Kim noted that mood disorders such as depression and anxiety may be part of the neuropsychiatric SLE criteria, but they failed to correlate with overall lupus disease activity in a cohort he evaluated. That makes it hard to distinguish whether those neuropsychiatric symptoms can actually be attributed to lupus. “Probably the more accurate interpretation is that there may be certain symptoms, such as nightmares, that indicated a prodrome of lupus,” he said. “Whether these are actually lupus symptoms is debatable to me.”
There remains value in initiating discussions about these symptoms with patients, however, because the stigma associated with neuropsychiatric symptoms may prevent patients from bringing them up themselves.
“It is important to remember that many of these patients, in common with other chronic diseases, will often have had long and traumatic journeys to diagnosis,” including having been misdiagnosed with a psychiatric condition, Dr. Sloan said. “Many of the patients then lose trust in doctors and are reluctant to report symptoms that may lead to another misdiagnosis.”
Clinicians may also be reluctant to bring up these symptoms, but for different reasons. Their reluctance may stem from insufficient time to discuss the symptoms or not having the support available to help the patients with these particular problems, Dr. Sloan said. The invisible nature of these symptoms, which lack biomarkers, makes them harder to identify and makes listening to patients more important, she added.
Study Details
In planning for the study, the researchers first searched the existing literature for studies involving neuropsychiatric symptoms in patients with systemic autoimmune rheumatic diseases (SARDs). “The literature indicated frequent underreporting and misattributions of neuropsychiatric symptoms in SLE and other SARD patients, and clinician-patient discordance in neuropsychiatric symptom attribution,” the authors reported.
During 2022-2023, the researchers conducted two surveys, one with 676 adult patients with SLE and one with 400 clinicians, recruited through social media, online patient support groups, and professional networks. All patients self-reported an SLE diagnosis that the researchers did not independently confirm. The patients were predominantly White (80%) and female (94%), ranging in age from 18 to over 70, with most falling between ages 40 and 69. Most patients lived in the United Kingdom (76%) or Europe (15%).
The clinicians included 51% rheumatologists, 24% psychiatrists, 13% neurologists, 5% rheumatology nurses, 3% primary care physicians, and 7% other clinicians. Nearly half of the clinicians (45%) were from the United Kingdom, with others from the United States or Canada (16%), Europe (17%), Asia (9%), Latin America (8%), Australia or New Zealand (3%), or elsewhere (3%).
The patient surveys asked whether they had experienced any of the 29 neuropsychiatric symptoms. For the symptoms that patients had experienced at least three times in their lives, the survey asked when they first experienced the symptom in relation to their SLE onset or other SLE symptoms: Over a year before, within a year of (on either side), 1-4 years after, or more than 5 years after onset/other symptoms. “Other quantitative data included timings of disrupted dreaming sleep in relation to hallucinations for those patients reporting experiencing these,” the authors wrote.
The researchers also conducted video conference interviews with 50 clinicians, including 20 rheumatologists, and 69 interviews with patients who had a systemic autoimmune rheumatic disease, including 27 patients with SLE. Other conditions among those interviewed included inflammatory arthritis, vasculitis, Sjögren disease, systemic sclerosis, myositis, undifferentiated and mixed connective tissue diseases, and polymyalgia rheumatica. During interviews, the term “daymare” was used to discuss possible hallucinations.
Linking Neuropsychiatric Symptoms and Disease
Four themes emerged from the analysis of the surveys and interviews. First, despite many rheumatologists stating that it was an “established theory” that most neuropsychiatric symptoms related to SLE would initially present around the time of diagnosis or disease onset, the findings from patients and interviews with psychiatrists did not align with this theory. The first presentation of each neuropsychiatric symptom only occurred around the onset of other SLE symptoms, about one fifth to one third of the time. In fact, more than half of the patients with SLE who had experienced hallucinations or delusions/paranoia said they occurred more than a year after they first experienced their other SLE symptoms.
Patient experiences differed in terms of whether they believed their neuropsychiatric symptoms were directly related to their SLE or other rheumatic disease. Some did attribute the symptoms, such as hypomania, to their rheumatic illness, while others, such as a patient with major depression, did not see the two as linked.
A second theme focused on pattern recognition of neuropsychiatric symptoms and the onset of a disease flare. “For example, several patients described how they felt that some types of depressive symptoms were directly attributable to active inflammation due to its time of onset and differences in type and intensity compared to their more ‘reactive’ low mood that could be more attributable to a consequence of psychological distress,” the authors wrote. Another common report from patients was experiencing a sudden, intense fatigue that coincided with a flare and differed from other types of fatigue.
Some patients could recognize that a flare was coming because of familiar neuropsychiatric symptoms that acted like an “early warning system.” Often, however, these symptoms “were absent from current diagnostic guidelines and only rarely identified by clinician interviewees as related to SLE/NPSLE,” the authors found. “These neuropsychiatric prodromal symptoms were reported as sometimes preceding the more widely recognized SLE and other SARD symptoms such as joint pain, rashes, and other organ involvement.” These symptoms included sudden changes in mood (usually a lowering but sometimes mania), increased nightmares, a “feeling of unreality,” or increased sensory symptoms.
Other patients, on the other hand, had not considered a link between neuropsychiatric symptoms and their rheumatic disease until the interview, and many of the clinicians, aside from psychiatrists and nurses, said they had little time in clinic to gather information about symptom progression.
Nightmares and Daymares
A third theme centered on disrupted dreaming sleep, nightmares, and “daymares” as a prodromal symptom in particular. Some patients had already drawn a connection between an oncoming flare of their disease and these dreaming-related symptoms, while others had not considered a link until the interviews.
“Several SLE patients recounted flares consistently involving the segueing of increasingly vivid and distressing nightmares into distorted reality and daytime hallucinations,” the authors reported. Flare-related nightmares in particular “often involved being attacked, trapped, crushed, or falling.” Patients tended to be more forthcoming about hallucinatory experiences when the term “daymare” was used to describe them, and they often related to the idea of feeling “in-between asleep and awake.”
Only one of the rheumatologists interviewed had considered nightmares as potentially related to SLE flares, and several appeared skeptical about a link but planned to ask their patients about it. Most of the specialists interviewed, meanwhile, said they often discussed sleep disruption with patients.
“There was agreement that recognizing and eliciting these early flare symptoms may improve care and even reduce clinic times by averting flares at any earlier stage, although some rheumatologists were clear that limited appointment times meant that these symptoms would not be prioritized for discussion,” the authors wrote.
Though Dr. Kim acknowledged the possibility of nightmares as prodromal, he noted other ways in which nightmares may be indirectly linked to lupus. “Trauma is a major risk factor for lupus,” Dr. Kim said, with multiple studies showing childhood traumatic experiences and even posttraumatic stress disorder to be risk factors for lupus. “Whether nightmares represent a traumatic event or prior traumatic events is not clear to me, but one could hypothesize that this may be a manifestation of trauma,” Dr. Kim said.
In addition, nightmares represent a sleep disorder that can substantially reduce sleep quality, Dr. Kim said, and poor sleep is also associated with lupus. “One has to wonder whether disruptive dreaming sleep is one of several specific manifestations of poor sleep quality, which then increases the risk of lupus in those patients,” Dr. Kim said.
Misattribution of Neuropsychiatric Symptoms
The final theme to emerge from the findings was patients had been misdiagnosed with psychiatric or psychosomatic conditions shortly before getting their rheumatic disease diagnosis. One patient, for example, reported being diagnosed with borderline personality disorder just 6 months before the lupus diagnosis at age 19 and noticed that the symptoms of one “got under control” when the symptoms of the other did.
“Early misattributions of SARD symptoms to primary psychiatric or psychosomatic conditions were frequently reported to have delayed SARD diagnosis and led to future misattributions,” the authors reported. “Whilst some of these misdiagnoses likely reflect the widespread lack of knowledge and limited definitive tests for SLE, it is plausible that some early SLE neurological and/or psychiatric symptoms may represent a neuropsychiatric prodrome for SLE itself.”
Dr. Kim agreed that misattribution of symptoms to other diagnoses is common with lupus and a common reason for delays in diagnosis, even with symptoms that are not neuropsychiatric. The findings in this study broaden “the type of symptoms we need to put on our radar pre-diagnosis,” Dr. Kim said. “We just also have to be aware that these prodromal symptoms are not diagnostic for lupus, though.”
Dr. Sloan cited earlier work in recommending an “ABC” approach to improving clinician-patient relationships: “Availability is being accessible when patients need them, Belief is demonstrating belief and validating patient self-reports of symptoms, and Continuity is when the same clinician sees the same patient each clinic visit to build up a trusting relationship.” She noted the importance of asking about and normalizing the existence of these symptoms with rheumatic diseases.
The research was funded by The Lupus Trust. Three authors reported consultancy, speaker, or advisory fees from Alumis, Amgen, AstraZeneca, Eli Lilly, GlaxoSmithKline, Janssen, MGP, Novartis, Pfizer, Sanofi, UCB, Vifor, and/or Werfen Group. The other authors, including Dr. Sloan, had no industry-related disclosures. Dr. Kim reported research support from AstraZeneca, GlaxoSmithKline, and Novartis; speaking fees from Exagen Diagnostics and GlaxoSmithKline; and consulting fees from AbbVie, Amgen, ANI Pharmaceuticals, AstraZeneca, Atara Bio, Aurinia Pharmaceuticals, Cargo Therapeutics, Exagen Diagnostics, Hinge Bio, GlaxoSmithKline, Kypha, Miltenyi Biotec, Synthekine, and Tectonic Therapeutic.
A version of this article appeared on Medscape.com.
Neuropsychiatric symptoms, including nightmares and hallucinatory “daymares,” may be a more important aspect of systemic lupus erythematosus (SLE) than formerly recognized, according to a qualitative mixed methods study published in The Lancet Discovery Science’s eClinicalMedicine. The findings suggested these neuropsychiatric symptoms can sometimes present as prodromal and other times act as an early warning system for a forthcoming flare.
“For clinicians, the key point is to be aware that neurological and psychiatric symptoms are much more common in patients with lupus and other autoimmune systemic rheumatic diseases than previously thought,” lead author Melanie Sloan, PhD, of the Department of Public Health and Primary Care at the University of Cambridge in England, told this news organization.
“If clinicians — and some do already — could all ask about and document these symptoms for each patient, the usual progression of symptoms in a flare can then be monitored, and patients could be supported and treated at an earlier stage,” Dr. Sloan said. “Another key point is to consider systemic autoimmune diseases at an early stage if a patient presents with multiple seemingly unconnected symptoms, which often include both physical and mental health symptoms.”
Alfred Kim, MD, PhD, associate professor of medicine in rheumatology at Washington University School of Medicine in St. Louis, Missouri, noted the difficulty of determining what neuropsychiatric symptoms may be linked to lupus vs those occurring independently or as part of a different condition.
“There is some controversy about whether the neuropsychiatric manifestations that we have long attributed to lupus actually are due to lupus,” Dr. Kim told this news organization. Dr. Kim was part of a group that published a review on potential mechanisms underlying neuropsychiatric symptoms described by a committee of the American College of Rheumatology.
Since that committee’s findings, “we have long assumed that if we saw these symptoms, the best explanation was lupus,” Dr. Kim said. “The problem is that, in the real world, we can see many of these manifestations in patients with lupus that do not get better with lupus meds. This opens up the very real possibility that another etiology is at play.”
Dr. Kim noted that mood disorders such as depression and anxiety may be part of the neuropsychiatric SLE criteria, but they failed to correlate with overall lupus disease activity in a cohort he evaluated. That makes it hard to distinguish whether those neuropsychiatric symptoms can actually be attributed to lupus. “Probably the more accurate interpretation is that there may be certain symptoms, such as nightmares, that indicated a prodrome of lupus,” he said. “Whether these are actually lupus symptoms is debatable to me.”
There remains value in initiating discussions about these symptoms with patients, however, because the stigma associated with neuropsychiatric symptoms may prevent patients from bringing them up themselves.
“It is important to remember that many of these patients, in common with other chronic diseases, will often have had long and traumatic journeys to diagnosis,” including having been misdiagnosed with a psychiatric condition, Dr. Sloan said. “Many of the patients then lose trust in doctors and are reluctant to report symptoms that may lead to another misdiagnosis.”
Clinicians may also be reluctant to bring up these symptoms, but for different reasons. Their reluctance may stem from insufficient time to discuss the symptoms or not having the support available to help the patients with these particular problems, Dr. Sloan said. The invisible nature of these symptoms, which lack biomarkers, makes them harder to identify and makes listening to patients more important, she added.
Study Details
In planning for the study, the researchers first searched the existing literature for studies involving neuropsychiatric symptoms in patients with systemic autoimmune rheumatic diseases (SARDs). “The literature indicated frequent underreporting and misattributions of neuropsychiatric symptoms in SLE and other SARD patients, and clinician-patient discordance in neuropsychiatric symptom attribution,” the authors reported.
During 2022-2023, the researchers conducted two surveys, one with 676 adult patients with SLE and one with 400 clinicians, recruited through social media, online patient support groups, and professional networks. All patients self-reported an SLE diagnosis that the researchers did not independently confirm. The patients were predominantly White (80%) and female (94%), ranging in age from 18 to over 70, with most falling between ages 40 and 69. Most patients lived in the United Kingdom (76%) or Europe (15%).
The clinicians included 51% rheumatologists, 24% psychiatrists, 13% neurologists, 5% rheumatology nurses, 3% primary care physicians, and 7% other clinicians. Nearly half of the clinicians (45%) were from the United Kingdom, with others from the United States or Canada (16%), Europe (17%), Asia (9%), Latin America (8%), Australia or New Zealand (3%), or elsewhere (3%).
The patient surveys asked whether they had experienced any of the 29 neuropsychiatric symptoms. For the symptoms that patients had experienced at least three times in their lives, the survey asked when they first experienced the symptom in relation to their SLE onset or other SLE symptoms: Over a year before, within a year of (on either side), 1-4 years after, or more than 5 years after onset/other symptoms. “Other quantitative data included timings of disrupted dreaming sleep in relation to hallucinations for those patients reporting experiencing these,” the authors wrote.
The researchers also conducted video conference interviews with 50 clinicians, including 20 rheumatologists, and 69 interviews with patients who had a systemic autoimmune rheumatic disease, including 27 patients with SLE. Other conditions among those interviewed included inflammatory arthritis, vasculitis, Sjögren disease, systemic sclerosis, myositis, undifferentiated and mixed connective tissue diseases, and polymyalgia rheumatica. During interviews, the term “daymare” was used to discuss possible hallucinations.
Linking Neuropsychiatric Symptoms and Disease
Four themes emerged from the analysis of the surveys and interviews. First, despite many rheumatologists stating that it was an “established theory” that most neuropsychiatric symptoms related to SLE would initially present around the time of diagnosis or disease onset, the findings from patients and interviews with psychiatrists did not align with this theory. The first presentation of each neuropsychiatric symptom only occurred around the onset of other SLE symptoms, about one fifth to one third of the time. In fact, more than half of the patients with SLE who had experienced hallucinations or delusions/paranoia said they occurred more than a year after they first experienced their other SLE symptoms.
Patient experiences differed in terms of whether they believed their neuropsychiatric symptoms were directly related to their SLE or other rheumatic disease. Some did attribute the symptoms, such as hypomania, to their rheumatic illness, while others, such as a patient with major depression, did not see the two as linked.
A second theme focused on pattern recognition of neuropsychiatric symptoms and the onset of a disease flare. “For example, several patients described how they felt that some types of depressive symptoms were directly attributable to active inflammation due to its time of onset and differences in type and intensity compared to their more ‘reactive’ low mood that could be more attributable to a consequence of psychological distress,” the authors wrote. Another common report from patients was experiencing a sudden, intense fatigue that coincided with a flare and differed from other types of fatigue.
Some patients could recognize that a flare was coming because of familiar neuropsychiatric symptoms that acted like an “early warning system.” Often, however, these symptoms “were absent from current diagnostic guidelines and only rarely identified by clinician interviewees as related to SLE/NPSLE,” the authors found. “These neuropsychiatric prodromal symptoms were reported as sometimes preceding the more widely recognized SLE and other SARD symptoms such as joint pain, rashes, and other organ involvement.” These symptoms included sudden changes in mood (usually a lowering but sometimes mania), increased nightmares, a “feeling of unreality,” or increased sensory symptoms.
Other patients, on the other hand, had not considered a link between neuropsychiatric symptoms and their rheumatic disease until the interview, and many of the clinicians, aside from psychiatrists and nurses, said they had little time in clinic to gather information about symptom progression.
Nightmares and Daymares
A third theme centered on disrupted dreaming sleep, nightmares, and “daymares” as a prodromal symptom in particular. Some patients had already drawn a connection between an oncoming flare of their disease and these dreaming-related symptoms, while others had not considered a link until the interviews.
“Several SLE patients recounted flares consistently involving the segueing of increasingly vivid and distressing nightmares into distorted reality and daytime hallucinations,” the authors reported. Flare-related nightmares in particular “often involved being attacked, trapped, crushed, or falling.” Patients tended to be more forthcoming about hallucinatory experiences when the term “daymare” was used to describe them, and they often related to the idea of feeling “in-between asleep and awake.”
Only one of the rheumatologists interviewed had considered nightmares as potentially related to SLE flares, and several appeared skeptical about a link but planned to ask their patients about it. Most of the specialists interviewed, meanwhile, said they often discussed sleep disruption with patients.
“There was agreement that recognizing and eliciting these early flare symptoms may improve care and even reduce clinic times by averting flares at any earlier stage, although some rheumatologists were clear that limited appointment times meant that these symptoms would not be prioritized for discussion,” the authors wrote.
Though Dr. Kim acknowledged the possibility of nightmares as prodromal, he noted other ways in which nightmares may be indirectly linked to lupus. “Trauma is a major risk factor for lupus,” Dr. Kim said, with multiple studies showing childhood traumatic experiences and even posttraumatic stress disorder to be risk factors for lupus. “Whether nightmares represent a traumatic event or prior traumatic events is not clear to me, but one could hypothesize that this may be a manifestation of trauma,” Dr. Kim said.
In addition, nightmares represent a sleep disorder that can substantially reduce sleep quality, Dr. Kim said, and poor sleep is also associated with lupus. “One has to wonder whether disruptive dreaming sleep is one of several specific manifestations of poor sleep quality, which then increases the risk of lupus in those patients,” Dr. Kim said.
Misattribution of Neuropsychiatric Symptoms
The final theme to emerge from the findings was patients had been misdiagnosed with psychiatric or psychosomatic conditions shortly before getting their rheumatic disease diagnosis. One patient, for example, reported being diagnosed with borderline personality disorder just 6 months before the lupus diagnosis at age 19 and noticed that the symptoms of one “got under control” when the symptoms of the other did.
“Early misattributions of SARD symptoms to primary psychiatric or psychosomatic conditions were frequently reported to have delayed SARD diagnosis and led to future misattributions,” the authors reported. “Whilst some of these misdiagnoses likely reflect the widespread lack of knowledge and limited definitive tests for SLE, it is plausible that some early SLE neurological and/or psychiatric symptoms may represent a neuropsychiatric prodrome for SLE itself.”
Dr. Kim agreed that misattribution of symptoms to other diagnoses is common with lupus and a common reason for delays in diagnosis, even with symptoms that are not neuropsychiatric. The findings in this study broaden “the type of symptoms we need to put on our radar pre-diagnosis,” Dr. Kim said. “We just also have to be aware that these prodromal symptoms are not diagnostic for lupus, though.”
Dr. Sloan cited earlier work in recommending an “ABC” approach to improving clinician-patient relationships: “Availability is being accessible when patients need them, Belief is demonstrating belief and validating patient self-reports of symptoms, and Continuity is when the same clinician sees the same patient each clinic visit to build up a trusting relationship.” She noted the importance of asking about and normalizing the existence of these symptoms with rheumatic diseases.
The research was funded by The Lupus Trust. Three authors reported consultancy, speaker, or advisory fees from Alumis, Amgen, AstraZeneca, Eli Lilly, GlaxoSmithKline, Janssen, MGP, Novartis, Pfizer, Sanofi, UCB, Vifor, and/or Werfen Group. The other authors, including Dr. Sloan, had no industry-related disclosures. Dr. Kim reported research support from AstraZeneca, GlaxoSmithKline, and Novartis; speaking fees from Exagen Diagnostics and GlaxoSmithKline; and consulting fees from AbbVie, Amgen, ANI Pharmaceuticals, AstraZeneca, Atara Bio, Aurinia Pharmaceuticals, Cargo Therapeutics, Exagen Diagnostics, Hinge Bio, GlaxoSmithKline, Kypha, Miltenyi Biotec, Synthekine, and Tectonic Therapeutic.
A version of this article appeared on Medscape.com.
Neuropsychiatric symptoms, including nightmares and hallucinatory “daymares,” may be a more important aspect of systemic lupus erythematosus (SLE) than formerly recognized, according to a qualitative mixed methods study published in The Lancet Discovery Science’s eClinicalMedicine. The findings suggested these neuropsychiatric symptoms can sometimes present as prodromal and other times act as an early warning system for a forthcoming flare.
“For clinicians, the key point is to be aware that neurological and psychiatric symptoms are much more common in patients with lupus and other autoimmune systemic rheumatic diseases than previously thought,” lead author Melanie Sloan, PhD, of the Department of Public Health and Primary Care at the University of Cambridge in England, told this news organization.
“If clinicians — and some do already — could all ask about and document these symptoms for each patient, the usual progression of symptoms in a flare can then be monitored, and patients could be supported and treated at an earlier stage,” Dr. Sloan said. “Another key point is to consider systemic autoimmune diseases at an early stage if a patient presents with multiple seemingly unconnected symptoms, which often include both physical and mental health symptoms.”
Alfred Kim, MD, PhD, associate professor of medicine in rheumatology at Washington University School of Medicine in St. Louis, Missouri, noted the difficulty of determining what neuropsychiatric symptoms may be linked to lupus vs those occurring independently or as part of a different condition.
“There is some controversy about whether the neuropsychiatric manifestations that we have long attributed to lupus actually are due to lupus,” Dr. Kim told this news organization. Dr. Kim was part of a group that published a review on potential mechanisms underlying neuropsychiatric symptoms described by a committee of the American College of Rheumatology.
Since that committee’s findings, “we have long assumed that if we saw these symptoms, the best explanation was lupus,” Dr. Kim said. “The problem is that, in the real world, we can see many of these manifestations in patients with lupus that do not get better with lupus meds. This opens up the very real possibility that another etiology is at play.”
Dr. Kim noted that mood disorders such as depression and anxiety may be part of the neuropsychiatric SLE criteria, but they failed to correlate with overall lupus disease activity in a cohort he evaluated. That makes it hard to distinguish whether those neuropsychiatric symptoms can actually be attributed to lupus. “Probably the more accurate interpretation is that there may be certain symptoms, such as nightmares, that indicated a prodrome of lupus,” he said. “Whether these are actually lupus symptoms is debatable to me.”
There remains value in initiating discussions about these symptoms with patients, however, because the stigma associated with neuropsychiatric symptoms may prevent patients from bringing them up themselves.
“It is important to remember that many of these patients, in common with other chronic diseases, will often have had long and traumatic journeys to diagnosis,” including having been misdiagnosed with a psychiatric condition, Dr. Sloan said. “Many of the patients then lose trust in doctors and are reluctant to report symptoms that may lead to another misdiagnosis.”
Clinicians may also be reluctant to bring up these symptoms, but for different reasons. Their reluctance may stem from insufficient time to discuss the symptoms or not having the support available to help the patients with these particular problems, Dr. Sloan said. The invisible nature of these symptoms, which lack biomarkers, makes them harder to identify and makes listening to patients more important, she added.
Study Details
In planning for the study, the researchers first searched the existing literature for studies involving neuropsychiatric symptoms in patients with systemic autoimmune rheumatic diseases (SARDs). “The literature indicated frequent underreporting and misattributions of neuropsychiatric symptoms in SLE and other SARD patients, and clinician-patient discordance in neuropsychiatric symptom attribution,” the authors reported.
During 2022-2023, the researchers conducted two surveys, one with 676 adult patients with SLE and one with 400 clinicians, recruited through social media, online patient support groups, and professional networks. All patients self-reported an SLE diagnosis that the researchers did not independently confirm. The patients were predominantly White (80%) and female (94%), ranging in age from 18 to over 70, with most falling between ages 40 and 69. Most patients lived in the United Kingdom (76%) or Europe (15%).
The clinicians included 51% rheumatologists, 24% psychiatrists, 13% neurologists, 5% rheumatology nurses, 3% primary care physicians, and 7% other clinicians. Nearly half of the clinicians (45%) were from the United Kingdom, with others from the United States or Canada (16%), Europe (17%), Asia (9%), Latin America (8%), Australia or New Zealand (3%), or elsewhere (3%).
The patient surveys asked whether they had experienced any of the 29 neuropsychiatric symptoms. For the symptoms that patients had experienced at least three times in their lives, the survey asked when they first experienced the symptom in relation to their SLE onset or other SLE symptoms: Over a year before, within a year of (on either side), 1-4 years after, or more than 5 years after onset/other symptoms. “Other quantitative data included timings of disrupted dreaming sleep in relation to hallucinations for those patients reporting experiencing these,” the authors wrote.
The researchers also conducted video conference interviews with 50 clinicians, including 20 rheumatologists, and 69 interviews with patients who had a systemic autoimmune rheumatic disease, including 27 patients with SLE. Other conditions among those interviewed included inflammatory arthritis, vasculitis, Sjögren disease, systemic sclerosis, myositis, undifferentiated and mixed connective tissue diseases, and polymyalgia rheumatica. During interviews, the term “daymare” was used to discuss possible hallucinations.
Linking Neuropsychiatric Symptoms and Disease
Four themes emerged from the analysis of the surveys and interviews. First, despite many rheumatologists stating that it was an “established theory” that most neuropsychiatric symptoms related to SLE would initially present around the time of diagnosis or disease onset, the findings from patients and interviews with psychiatrists did not align with this theory. The first presentation of each neuropsychiatric symptom only occurred around the onset of other SLE symptoms, about one fifth to one third of the time. In fact, more than half of the patients with SLE who had experienced hallucinations or delusions/paranoia said they occurred more than a year after they first experienced their other SLE symptoms.
Patient experiences differed in terms of whether they believed their neuropsychiatric symptoms were directly related to their SLE or other rheumatic disease. Some did attribute the symptoms, such as hypomania, to their rheumatic illness, while others, such as a patient with major depression, did not see the two as linked.
A second theme focused on pattern recognition of neuropsychiatric symptoms and the onset of a disease flare. “For example, several patients described how they felt that some types of depressive symptoms were directly attributable to active inflammation due to its time of onset and differences in type and intensity compared to their more ‘reactive’ low mood that could be more attributable to a consequence of psychological distress,” the authors wrote. Another common report from patients was experiencing a sudden, intense fatigue that coincided with a flare and differed from other types of fatigue.
Some patients could recognize that a flare was coming because of familiar neuropsychiatric symptoms that acted like an “early warning system.” Often, however, these symptoms “were absent from current diagnostic guidelines and only rarely identified by clinician interviewees as related to SLE/NPSLE,” the authors found. “These neuropsychiatric prodromal symptoms were reported as sometimes preceding the more widely recognized SLE and other SARD symptoms such as joint pain, rashes, and other organ involvement.” These symptoms included sudden changes in mood (usually a lowering but sometimes mania), increased nightmares, a “feeling of unreality,” or increased sensory symptoms.
Other patients, on the other hand, had not considered a link between neuropsychiatric symptoms and their rheumatic disease until the interview, and many of the clinicians, aside from psychiatrists and nurses, said they had little time in clinic to gather information about symptom progression.
Nightmares and Daymares
A third theme centered on disrupted dreaming sleep, nightmares, and “daymares” as a prodromal symptom in particular. Some patients had already drawn a connection between an oncoming flare of their disease and these dreaming-related symptoms, while others had not considered a link until the interviews.
“Several SLE patients recounted flares consistently involving the segueing of increasingly vivid and distressing nightmares into distorted reality and daytime hallucinations,” the authors reported. Flare-related nightmares in particular “often involved being attacked, trapped, crushed, or falling.” Patients tended to be more forthcoming about hallucinatory experiences when the term “daymare” was used to describe them, and they often related to the idea of feeling “in-between asleep and awake.”
Only one of the rheumatologists interviewed had considered nightmares as potentially related to SLE flares, and several appeared skeptical about a link but planned to ask their patients about it. Most of the specialists interviewed, meanwhile, said they often discussed sleep disruption with patients.
“There was agreement that recognizing and eliciting these early flare symptoms may improve care and even reduce clinic times by averting flares at any earlier stage, although some rheumatologists were clear that limited appointment times meant that these symptoms would not be prioritized for discussion,” the authors wrote.
Though Dr. Kim acknowledged the possibility of nightmares as prodromal, he noted other ways in which nightmares may be indirectly linked to lupus. “Trauma is a major risk factor for lupus,” Dr. Kim said, with multiple studies showing childhood traumatic experiences and even posttraumatic stress disorder to be risk factors for lupus. “Whether nightmares represent a traumatic event or prior traumatic events is not clear to me, but one could hypothesize that this may be a manifestation of trauma,” Dr. Kim said.
In addition, nightmares represent a sleep disorder that can substantially reduce sleep quality, Dr. Kim said, and poor sleep is also associated with lupus. “One has to wonder whether disruptive dreaming sleep is one of several specific manifestations of poor sleep quality, which then increases the risk of lupus in those patients,” Dr. Kim said.
Misattribution of Neuropsychiatric Symptoms
The final theme to emerge from the findings was patients had been misdiagnosed with psychiatric or psychosomatic conditions shortly before getting their rheumatic disease diagnosis. One patient, for example, reported being diagnosed with borderline personality disorder just 6 months before the lupus diagnosis at age 19 and noticed that the symptoms of one “got under control” when the symptoms of the other did.
“Early misattributions of SARD symptoms to primary psychiatric or psychosomatic conditions were frequently reported to have delayed SARD diagnosis and led to future misattributions,” the authors reported. “Whilst some of these misdiagnoses likely reflect the widespread lack of knowledge and limited definitive tests for SLE, it is plausible that some early SLE neurological and/or psychiatric symptoms may represent a neuropsychiatric prodrome for SLE itself.”
Dr. Kim agreed that misattribution of symptoms to other diagnoses is common with lupus and a common reason for delays in diagnosis, even with symptoms that are not neuropsychiatric. The findings in this study broaden “the type of symptoms we need to put on our radar pre-diagnosis,” Dr. Kim said. “We just also have to be aware that these prodromal symptoms are not diagnostic for lupus, though.”
Dr. Sloan cited earlier work in recommending an “ABC” approach to improving clinician-patient relationships: “Availability is being accessible when patients need them, Belief is demonstrating belief and validating patient self-reports of symptoms, and Continuity is when the same clinician sees the same patient each clinic visit to build up a trusting relationship.” She noted the importance of asking about and normalizing the existence of these symptoms with rheumatic diseases.
The research was funded by The Lupus Trust. Three authors reported consultancy, speaker, or advisory fees from Alumis, Amgen, AstraZeneca, Eli Lilly, GlaxoSmithKline, Janssen, MGP, Novartis, Pfizer, Sanofi, UCB, Vifor, and/or Werfen Group. The other authors, including Dr. Sloan, had no industry-related disclosures. Dr. Kim reported research support from AstraZeneca, GlaxoSmithKline, and Novartis; speaking fees from Exagen Diagnostics and GlaxoSmithKline; and consulting fees from AbbVie, Amgen, ANI Pharmaceuticals, AstraZeneca, Atara Bio, Aurinia Pharmaceuticals, Cargo Therapeutics, Exagen Diagnostics, Hinge Bio, GlaxoSmithKline, Kypha, Miltenyi Biotec, Synthekine, and Tectonic Therapeutic.
A version of this article appeared on Medscape.com.
FROM ECLINICALMEDICINE
Access to Perinatal Mental Healthcare: What Exactly Are The Obstacles?
The first of May is marked as the World Maternal Mental Health Day, a time for patient groups, medical societies, clinicians, and other colleagues who care for women to highlight maternal mental health and to advocate for increased awareness, enhanced access to care, decrease in stigma, and development of the most effective treatments.
In this spirit, and within the context of greater mental health awareness, I wanted to highlight the ironic dichotomy we see in reproductive psychiatry today. Namely, although we have many useful treatments available in the field to treat maternal psychiatric illness, there are barriers to accessing mental healthcare that prevent women from receiving treatment and getting well.
Thinking back on the last few years from the other side of the pandemic, when COVID concerns turned the experience of motherhood on its side in so many ways, we can only acknowledge that it is an important time in the field of reproductive psychiatry. We have seen not only the development of new pharmacologic (neurosteroids) and nonpharmacologic therapies (transcranial magnetic stimulation, cognitive-behaviorial therapy for perinatal depression), but also the focus on new digital apps for perinatal depression that may be scalable and that may help bridge the voids in access to effective treatment from the most rural to the most urban settings.
In a previous column, I wrote about the potential difficulties of identifying at-risk women with postpartum psychiatric illness, particularly within the context of disparate data collection methods and management of data. Hospital systems that favor paper screening methods rather than digital platforms pose special problems. I also noted an even larger concern: namely, once screened, it can be very challenging to engage women with postpartum depression in treatment, and women may ultimately not navigate to care for a variety of reasons. These components are but one part of the so-called “perinatal treatment cascade.” When we look at access to care, patients would ideally move from depression screening as an example and, following endorsement of significant symptoms, would receive a referral, which would result in the patient being seen, followed up, and getting well. But that is not what is happening.
A recent preliminary study published as a short communication in the Archives of Women’s Mental Health highlighted this issue. The authors used the Edinburgh Postnatal Depression Scale (EPDS) to follow symptoms of depression in 145 pregnant women in ob.gyn. services, and found that there were low levels of adherence to psychiatric screenings and referrals in the perinatal period. Another study published in the Journal of Clinical Psychiatry found 30.8% of women with postpartum depression were identified clinically, 15.8% received treatment, and 3.2% achieved remission. That is the gulf, in 2024, that we have not managed to bridge.
The findings show the difficulty women experience accessing perinatal mental health resources. While we’ve known for a long time that the “perinatal treatment cascade” is real, what we don’t understand are the variables in the mix, particularly for patients in marginalized groups. We also do not know where women fall off the curve with regard to accessing care. In my mind, if we’re going to make a difference, we need to know the answer to that question.
Part of the issue is that the research into understanding why women fall off the curve is incomplete. You cannot simply hand a sheet to a woman with an EPDS score of 12 who’s depressed and has a newborn and expect her to navigate to care. What we should really be doing is investing in care navigation for women.
The situation is analogous to diagnosing and treating cardiac abnormalities in a catheterization laboratory. If a patient has a blocked coronary artery and needs a stent, then they need to go to the cath lab. We haven’t yet figured out the process in reproductive psychiatry to optimize the likelihood that patients will be screened and then referred to receive the best available treatment.
Some of our ob.gyn. colleagues have been working to improve access to perinatal mental health services, such as offering on-site services, and offering training and services to patients and providers on screening, assessment, and treatment. At the Center for Women’s Mental Health, we are conducting the Screening and Treatment Enhancement for Postpartum Depression study, which is a universal screening and referral program for women at our center. While some progress is being made, there are still far too many women who are falling through the cracks and not receiving the care they need.
It is both ironic and sad that the growing number of available treatments in reproductive psychiatry are scalable, yet we haven’t figured out how to facilitate access to care. While we should be excited about new treatments, we also need to take the time to understand what the barriers are for at-risk women accessing mental healthcare in the postpartum period.
Dr. Cohen is the director of the Ammon-Pinizzotto Center for Women’s Mental Health at Massachusetts General Hospital in Boston, which provides information resources and conducts clinical care and research in reproductive mental health. He has been a consultant to manufacturers of psychiatric medications. STEPS for PPD is funded by the Marriott Foundation. Full disclosure information for Dr. Cohen is available at womensmentalhealth.org. Email Dr. Cohen at [email protected].
The first of May is marked as the World Maternal Mental Health Day, a time for patient groups, medical societies, clinicians, and other colleagues who care for women to highlight maternal mental health and to advocate for increased awareness, enhanced access to care, decrease in stigma, and development of the most effective treatments.
In this spirit, and within the context of greater mental health awareness, I wanted to highlight the ironic dichotomy we see in reproductive psychiatry today. Namely, although we have many useful treatments available in the field to treat maternal psychiatric illness, there are barriers to accessing mental healthcare that prevent women from receiving treatment and getting well.
Thinking back on the last few years from the other side of the pandemic, when COVID concerns turned the experience of motherhood on its side in so many ways, we can only acknowledge that it is an important time in the field of reproductive psychiatry. We have seen not only the development of new pharmacologic (neurosteroids) and nonpharmacologic therapies (transcranial magnetic stimulation, cognitive-behaviorial therapy for perinatal depression), but also the focus on new digital apps for perinatal depression that may be scalable and that may help bridge the voids in access to effective treatment from the most rural to the most urban settings.
In a previous column, I wrote about the potential difficulties of identifying at-risk women with postpartum psychiatric illness, particularly within the context of disparate data collection methods and management of data. Hospital systems that favor paper screening methods rather than digital platforms pose special problems. I also noted an even larger concern: namely, once screened, it can be very challenging to engage women with postpartum depression in treatment, and women may ultimately not navigate to care for a variety of reasons. These components are but one part of the so-called “perinatal treatment cascade.” When we look at access to care, patients would ideally move from depression screening as an example and, following endorsement of significant symptoms, would receive a referral, which would result in the patient being seen, followed up, and getting well. But that is not what is happening.
A recent preliminary study published as a short communication in the Archives of Women’s Mental Health highlighted this issue. The authors used the Edinburgh Postnatal Depression Scale (EPDS) to follow symptoms of depression in 145 pregnant women in ob.gyn. services, and found that there were low levels of adherence to psychiatric screenings and referrals in the perinatal period. Another study published in the Journal of Clinical Psychiatry found 30.8% of women with postpartum depression were identified clinically, 15.8% received treatment, and 3.2% achieved remission. That is the gulf, in 2024, that we have not managed to bridge.
The findings show the difficulty women experience accessing perinatal mental health resources. While we’ve known for a long time that the “perinatal treatment cascade” is real, what we don’t understand are the variables in the mix, particularly for patients in marginalized groups. We also do not know where women fall off the curve with regard to accessing care. In my mind, if we’re going to make a difference, we need to know the answer to that question.
Part of the issue is that the research into understanding why women fall off the curve is incomplete. You cannot simply hand a sheet to a woman with an EPDS score of 12 who’s depressed and has a newborn and expect her to navigate to care. What we should really be doing is investing in care navigation for women.
The situation is analogous to diagnosing and treating cardiac abnormalities in a catheterization laboratory. If a patient has a blocked coronary artery and needs a stent, then they need to go to the cath lab. We haven’t yet figured out the process in reproductive psychiatry to optimize the likelihood that patients will be screened and then referred to receive the best available treatment.
Some of our ob.gyn. colleagues have been working to improve access to perinatal mental health services, such as offering on-site services, and offering training and services to patients and providers on screening, assessment, and treatment. At the Center for Women’s Mental Health, we are conducting the Screening and Treatment Enhancement for Postpartum Depression study, which is a universal screening and referral program for women at our center. While some progress is being made, there are still far too many women who are falling through the cracks and not receiving the care they need.
It is both ironic and sad that the growing number of available treatments in reproductive psychiatry are scalable, yet we haven’t figured out how to facilitate access to care. While we should be excited about new treatments, we also need to take the time to understand what the barriers are for at-risk women accessing mental healthcare in the postpartum period.
Dr. Cohen is the director of the Ammon-Pinizzotto Center for Women’s Mental Health at Massachusetts General Hospital in Boston, which provides information resources and conducts clinical care and research in reproductive mental health. He has been a consultant to manufacturers of psychiatric medications. STEPS for PPD is funded by the Marriott Foundation. Full disclosure information for Dr. Cohen is available at womensmentalhealth.org. Email Dr. Cohen at [email protected].
The first of May is marked as the World Maternal Mental Health Day, a time for patient groups, medical societies, clinicians, and other colleagues who care for women to highlight maternal mental health and to advocate for increased awareness, enhanced access to care, decrease in stigma, and development of the most effective treatments.
In this spirit, and within the context of greater mental health awareness, I wanted to highlight the ironic dichotomy we see in reproductive psychiatry today. Namely, although we have many useful treatments available in the field to treat maternal psychiatric illness, there are barriers to accessing mental healthcare that prevent women from receiving treatment and getting well.
Thinking back on the last few years from the other side of the pandemic, when COVID concerns turned the experience of motherhood on its side in so many ways, we can only acknowledge that it is an important time in the field of reproductive psychiatry. We have seen not only the development of new pharmacologic (neurosteroids) and nonpharmacologic therapies (transcranial magnetic stimulation, cognitive-behaviorial therapy for perinatal depression), but also the focus on new digital apps for perinatal depression that may be scalable and that may help bridge the voids in access to effective treatment from the most rural to the most urban settings.
In a previous column, I wrote about the potential difficulties of identifying at-risk women with postpartum psychiatric illness, particularly within the context of disparate data collection methods and management of data. Hospital systems that favor paper screening methods rather than digital platforms pose special problems. I also noted an even larger concern: namely, once screened, it can be very challenging to engage women with postpartum depression in treatment, and women may ultimately not navigate to care for a variety of reasons. These components are but one part of the so-called “perinatal treatment cascade.” When we look at access to care, patients would ideally move from depression screening as an example and, following endorsement of significant symptoms, would receive a referral, which would result in the patient being seen, followed up, and getting well. But that is not what is happening.
A recent preliminary study published as a short communication in the Archives of Women’s Mental Health highlighted this issue. The authors used the Edinburgh Postnatal Depression Scale (EPDS) to follow symptoms of depression in 145 pregnant women in ob.gyn. services, and found that there were low levels of adherence to psychiatric screenings and referrals in the perinatal period. Another study published in the Journal of Clinical Psychiatry found 30.8% of women with postpartum depression were identified clinically, 15.8% received treatment, and 3.2% achieved remission. That is the gulf, in 2024, that we have not managed to bridge.
The findings show the difficulty women experience accessing perinatal mental health resources. While we’ve known for a long time that the “perinatal treatment cascade” is real, what we don’t understand are the variables in the mix, particularly for patients in marginalized groups. We also do not know where women fall off the curve with regard to accessing care. In my mind, if we’re going to make a difference, we need to know the answer to that question.
Part of the issue is that the research into understanding why women fall off the curve is incomplete. You cannot simply hand a sheet to a woman with an EPDS score of 12 who’s depressed and has a newborn and expect her to navigate to care. What we should really be doing is investing in care navigation for women.
The situation is analogous to diagnosing and treating cardiac abnormalities in a catheterization laboratory. If a patient has a blocked coronary artery and needs a stent, then they need to go to the cath lab. We haven’t yet figured out the process in reproductive psychiatry to optimize the likelihood that patients will be screened and then referred to receive the best available treatment.
Some of our ob.gyn. colleagues have been working to improve access to perinatal mental health services, such as offering on-site services, and offering training and services to patients and providers on screening, assessment, and treatment. At the Center for Women’s Mental Health, we are conducting the Screening and Treatment Enhancement for Postpartum Depression study, which is a universal screening and referral program for women at our center. While some progress is being made, there are still far too many women who are falling through the cracks and not receiving the care they need.
It is both ironic and sad that the growing number of available treatments in reproductive psychiatry are scalable, yet we haven’t figured out how to facilitate access to care. While we should be excited about new treatments, we also need to take the time to understand what the barriers are for at-risk women accessing mental healthcare in the postpartum period.
Dr. Cohen is the director of the Ammon-Pinizzotto Center for Women’s Mental Health at Massachusetts General Hospital in Boston, which provides information resources and conducts clinical care and research in reproductive mental health. He has been a consultant to manufacturers of psychiatric medications. STEPS for PPD is funded by the Marriott Foundation. Full disclosure information for Dr. Cohen is available at womensmentalhealth.org. Email Dr. Cohen at [email protected].
Severe Maternal Morbidity Can Adversely Affect Mental Health
TOPLINE:
Individuals with severe maternal morbidity (SMM) are at an increased risk for mental health condition–related hospitalization or emergency department (ED) visits up to 13 years after delivery.
METHODOLOGY:
- This retrospective cohort study compared mental health hospitalizations and ED visits in postpartum individuals with and without SMM over 13 years after delivery from April 2008 to March 2021.
- The study analyzed 1,579,392 individuals aged 18-55 years with a first recorded liveborn or stillborn delivery from a pregnancy lasting 20-43 weeks, of which 35,825 (2.3%) had exposure to SMM.
- The SMM exposure was analyzed for events occurring after 20 weeks’ gestation and up to 42 days after delivery hospital discharge in the first recorded birth; those without SMM were considered unexposed.
- The main outcome was a combination of mental health hospitalizations or ED visits occurring at least 43 days after the index birth hospitalization.
TAKEAWAY:
- Individuals with SMM had a 1.3-fold increased risk of mental health hospitalizations or ED visits.
- The hospital or ED visits per 10,000 person-years were 59.2 for mood and anxiety disorders, 17.1 for substance abuse and related disorders, 4.8 for suicidality or self-harm, and 4.1 for schizophrenia spectrum or other psychotic disorders.
- Following SMM, an elevated risk was observed for all mental health outcomes except one (schizophrenia spectrum and other psychotic disorders), with the highest risk seen for suicidality and self-harm (aHR, 1.54).
IN PRACTICE:
“Knowledge of the short- and long-term risks of serious mental health conditions after SMM and its subtypes could inform the need for enhanced postpartum supportive resources,” the authors wrote.
SOURCE:
This study was led by Asia Blackman, MSc, Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montreal, Québec, Canada. It was published online in JAMA Network Open.
LIMITATIONS:
The study is limited by its observational design, missing data, and misclassification bias.
DISCLOSURES:
This study was supported by funding from the Canadian Institutes of Health Research. Three authors reported receiving personal fees or grants outside the submitted work. No other conflicts of interest were reported.
A version of this article first appeared on Medscape.com.
TOPLINE:
Individuals with severe maternal morbidity (SMM) are at an increased risk for mental health condition–related hospitalization or emergency department (ED) visits up to 13 years after delivery.
METHODOLOGY:
- This retrospective cohort study compared mental health hospitalizations and ED visits in postpartum individuals with and without SMM over 13 years after delivery from April 2008 to March 2021.
- The study analyzed 1,579,392 individuals aged 18-55 years with a first recorded liveborn or stillborn delivery from a pregnancy lasting 20-43 weeks, of which 35,825 (2.3%) had exposure to SMM.
- The SMM exposure was analyzed for events occurring after 20 weeks’ gestation and up to 42 days after delivery hospital discharge in the first recorded birth; those without SMM were considered unexposed.
- The main outcome was a combination of mental health hospitalizations or ED visits occurring at least 43 days after the index birth hospitalization.
TAKEAWAY:
- Individuals with SMM had a 1.3-fold increased risk of mental health hospitalizations or ED visits.
- The hospital or ED visits per 10,000 person-years were 59.2 for mood and anxiety disorders, 17.1 for substance abuse and related disorders, 4.8 for suicidality or self-harm, and 4.1 for schizophrenia spectrum or other psychotic disorders.
- Following SMM, an elevated risk was observed for all mental health outcomes except one (schizophrenia spectrum and other psychotic disorders), with the highest risk seen for suicidality and self-harm (aHR, 1.54).
IN PRACTICE:
“Knowledge of the short- and long-term risks of serious mental health conditions after SMM and its subtypes could inform the need for enhanced postpartum supportive resources,” the authors wrote.
SOURCE:
This study was led by Asia Blackman, MSc, Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montreal, Québec, Canada. It was published online in JAMA Network Open.
LIMITATIONS:
The study is limited by its observational design, missing data, and misclassification bias.
DISCLOSURES:
This study was supported by funding from the Canadian Institutes of Health Research. Three authors reported receiving personal fees or grants outside the submitted work. No other conflicts of interest were reported.
A version of this article first appeared on Medscape.com.
TOPLINE:
Individuals with severe maternal morbidity (SMM) are at an increased risk for mental health condition–related hospitalization or emergency department (ED) visits up to 13 years after delivery.
METHODOLOGY:
- This retrospective cohort study compared mental health hospitalizations and ED visits in postpartum individuals with and without SMM over 13 years after delivery from April 2008 to March 2021.
- The study analyzed 1,579,392 individuals aged 18-55 years with a first recorded liveborn or stillborn delivery from a pregnancy lasting 20-43 weeks, of which 35,825 (2.3%) had exposure to SMM.
- The SMM exposure was analyzed for events occurring after 20 weeks’ gestation and up to 42 days after delivery hospital discharge in the first recorded birth; those without SMM were considered unexposed.
- The main outcome was a combination of mental health hospitalizations or ED visits occurring at least 43 days after the index birth hospitalization.
TAKEAWAY:
- Individuals with SMM had a 1.3-fold increased risk of mental health hospitalizations or ED visits.
- The hospital or ED visits per 10,000 person-years were 59.2 for mood and anxiety disorders, 17.1 for substance abuse and related disorders, 4.8 for suicidality or self-harm, and 4.1 for schizophrenia spectrum or other psychotic disorders.
- Following SMM, an elevated risk was observed for all mental health outcomes except one (schizophrenia spectrum and other psychotic disorders), with the highest risk seen for suicidality and self-harm (aHR, 1.54).
IN PRACTICE:
“Knowledge of the short- and long-term risks of serious mental health conditions after SMM and its subtypes could inform the need for enhanced postpartum supportive resources,” the authors wrote.
SOURCE:
This study was led by Asia Blackman, MSc, Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montreal, Québec, Canada. It was published online in JAMA Network Open.
LIMITATIONS:
The study is limited by its observational design, missing data, and misclassification bias.
DISCLOSURES:
This study was supported by funding from the Canadian Institutes of Health Research. Three authors reported receiving personal fees or grants outside the submitted work. No other conflicts of interest were reported.
A version of this article first appeared on Medscape.com.
Protecting Patients From Cybercrime: Advice for Mental Health Clinicians
Seniors are increasingly targeted in ever-sophisticated online financial cybercrimes, but mental health clinicians can play a key role in protecting their patients.
Elizabeth J. Santos, MD, clinical chief, Division of Geriatric Mental Health & Memory Care, and associate professor of psychiatry, neurology & medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York, provided tips to attendees of the American Psychiatric Association (APA) 2024 Annual Meeting, and elaborated on these for this news organization.
Cybercrimes targeting seniors are common. A 2023 University of Michigan National Poll on Healthy Aging found 75% of adults aged 50-80 years experienced a fraud attempt either online or by phone, text, email, or mail in the past 2 years.
The poll found about 30% of respondents reported experiencing financial fraud, which could involve compromising credit cards, hacking bank accounts, or identity theft.
Older age is a risk factor for cybercrime. Seniors may have lower cognitive functioning and/or impaired decision-making. In addition, they are often socially isolated, dependent on others, and have poor health and financial literacy.
Romance Scams Common
Romance scams are another common financial fraud. Stephanie Garayalde, MD, a geriatric psychiatrist at the University of Florida, Gainesville, Florida, and another presenter at the APA session, used the example of Mr. L, a 74-year-old outpatient under treatment for depression who was unable to pay his rent.
Mr. L was giving money to his “girlfriend” he met online. Their relationship was totally virtual; she always had constant excuses for not meeting in person. He was funneling increasing funds to pay what he believed were medical bills and to bail her out of various other emergencies.
Once the fraud was discovered, Mr. L not only felt the loneliness of a lost romantic connection but also grappled with feelings of embarrassment and guilt.
“I see older patients who have been scammed who feel ashamed that they haven’t left enough money for their families,” said Dr. Santos.
Another well-known scam targets grandparents. Fraudsters sometimes use an artificial intelligence–generated voice mimicking a young family member and pretend to need money right away for bail or another problem.
In such situations, Dr. Santos advises patients to “hang up and call your family” to verify the call “no matter what the person says or who they sound like.”
Scammers may impersonate government officials to try to get social insurance information. Dr. Santos stresses the importance of never giving out this information. “If someone says they’re from your bank or a government agency like the IRS, hang up and call the bank or agency yourself.”
Evidence suggests this and other cybercrimes are on the rise. The Federal Bureau of Investigation’s Internet Crime Complaint Center received 888,000 complaints in 2023, a 10% increase from 2022, and losses of about $12.5 billion, which is a 22% increase over 2022.
It’s not that uncommon for the same older person to be scammed by numerous people and fall for it again and again, said Dr. Santos.
To mitigate the risk to this vulnerable group, researchers at the University of Central Florida, Orlando, Florida, are developing a scam screener for the elderly that will provide tools to help doctors screen older adults. The screen will focus on identifying factors that make victims most vulnerable, including seniors’ ability to think critically, a necessary skill for guarding against cybercrime.
Red Flags
In the meantime, Dr. Santos identified red flags for clinicians. Patients may show deviations in their typical behaviors; for example, they may seem sadder, more subdued, or more withdrawn than usual.
As loneliness and isolation can be a signal of victimization, “ask patients about their connectedness and be suspicious if the connectedness is all virtual,” she said.
Learning about the quality of their relationships is also important. “Instead of asking the superficial question of ‘Do you have friends’, ask ‘How do you talk to your friends? Are you actually getting out and meeting them?’”
If patients report they have never actually seen these so-called friends in-person, it should raise a red flag.
Another clue something may be amiss is “needing to be on their device or be home to get a call at a certain time.” Dr. Santos recalled a patient whose cell phone rang constantly during an evaluation, even after she had changed her phone number several times. “The scammers kept tracking her down,” she said.
Patients who are victims of cybercrime may stop taking their medications, fail to follow up on ordered tests, or miss paying for medical services.
Dr. Santos recommended screening for conditions known to be linked to cybercrime victimization such as depression. One of her patients was attending her memory clinic, but their cognitive issues were due to depression, not dementia.
It is important to identify subtle cognitive impairments. Dr. Santos recommended using the Saint Louis University Mental Status Examination, which she says is easier to use than the Montreal Cognitive Assessment.
Avoid Shaming
When managing patients who are potential cybercrime victims, she also suggests doctors be careful about their tone and their attitude. “Don’t shame someone for becoming a victim because it happens to everyone.”
When patients show signs of victimization, physicians could consider asking about their Internet use, social media practices, and general safety surrounding their finances.
They should emphasize the importance of protecting accounts through strong passwords, multifactor authentication when possible, and avoidance of sharing personal information with anyone who calls, emails, or texts.
Clinicians might also consider asking patients to review bills for new or unusual charges, check their bank account statements for withdrawals they didn’t make, and review credit reports for accounts in their name they don’t recognize.
Clinicians should also encourage patients to have a healthcare proxy, power of attorney, and advanced directives and recommend resources that can help victims. These include:
Federal Trade Commission (to report identity theft): https://reportfraud.ftc.gov; https://www.identitytheft.gov
Federal Bureau of Investigation – Internet Crime and Complaint Center https://www.ic3.gov
National Elder Fraud Hotline (1-833-372-8311) or 1-833-FRAUD-11
http://ovc.ojp.gov/program/stop-elder-fraud/providing-help-restoring-hope
A version of this article appeared on Medscape.com.
Seniors are increasingly targeted in ever-sophisticated online financial cybercrimes, but mental health clinicians can play a key role in protecting their patients.
Elizabeth J. Santos, MD, clinical chief, Division of Geriatric Mental Health & Memory Care, and associate professor of psychiatry, neurology & medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York, provided tips to attendees of the American Psychiatric Association (APA) 2024 Annual Meeting, and elaborated on these for this news organization.
Cybercrimes targeting seniors are common. A 2023 University of Michigan National Poll on Healthy Aging found 75% of adults aged 50-80 years experienced a fraud attempt either online or by phone, text, email, or mail in the past 2 years.
The poll found about 30% of respondents reported experiencing financial fraud, which could involve compromising credit cards, hacking bank accounts, or identity theft.
Older age is a risk factor for cybercrime. Seniors may have lower cognitive functioning and/or impaired decision-making. In addition, they are often socially isolated, dependent on others, and have poor health and financial literacy.
Romance Scams Common
Romance scams are another common financial fraud. Stephanie Garayalde, MD, a geriatric psychiatrist at the University of Florida, Gainesville, Florida, and another presenter at the APA session, used the example of Mr. L, a 74-year-old outpatient under treatment for depression who was unable to pay his rent.
Mr. L was giving money to his “girlfriend” he met online. Their relationship was totally virtual; she always had constant excuses for not meeting in person. He was funneling increasing funds to pay what he believed were medical bills and to bail her out of various other emergencies.
Once the fraud was discovered, Mr. L not only felt the loneliness of a lost romantic connection but also grappled with feelings of embarrassment and guilt.
“I see older patients who have been scammed who feel ashamed that they haven’t left enough money for their families,” said Dr. Santos.
Another well-known scam targets grandparents. Fraudsters sometimes use an artificial intelligence–generated voice mimicking a young family member and pretend to need money right away for bail or another problem.
In such situations, Dr. Santos advises patients to “hang up and call your family” to verify the call “no matter what the person says or who they sound like.”
Scammers may impersonate government officials to try to get social insurance information. Dr. Santos stresses the importance of never giving out this information. “If someone says they’re from your bank or a government agency like the IRS, hang up and call the bank or agency yourself.”
Evidence suggests this and other cybercrimes are on the rise. The Federal Bureau of Investigation’s Internet Crime Complaint Center received 888,000 complaints in 2023, a 10% increase from 2022, and losses of about $12.5 billion, which is a 22% increase over 2022.
It’s not that uncommon for the same older person to be scammed by numerous people and fall for it again and again, said Dr. Santos.
To mitigate the risk to this vulnerable group, researchers at the University of Central Florida, Orlando, Florida, are developing a scam screener for the elderly that will provide tools to help doctors screen older adults. The screen will focus on identifying factors that make victims most vulnerable, including seniors’ ability to think critically, a necessary skill for guarding against cybercrime.
Red Flags
In the meantime, Dr. Santos identified red flags for clinicians. Patients may show deviations in their typical behaviors; for example, they may seem sadder, more subdued, or more withdrawn than usual.
As loneliness and isolation can be a signal of victimization, “ask patients about their connectedness and be suspicious if the connectedness is all virtual,” she said.
Learning about the quality of their relationships is also important. “Instead of asking the superficial question of ‘Do you have friends’, ask ‘How do you talk to your friends? Are you actually getting out and meeting them?’”
If patients report they have never actually seen these so-called friends in-person, it should raise a red flag.
Another clue something may be amiss is “needing to be on their device or be home to get a call at a certain time.” Dr. Santos recalled a patient whose cell phone rang constantly during an evaluation, even after she had changed her phone number several times. “The scammers kept tracking her down,” she said.
Patients who are victims of cybercrime may stop taking their medications, fail to follow up on ordered tests, or miss paying for medical services.
Dr. Santos recommended screening for conditions known to be linked to cybercrime victimization such as depression. One of her patients was attending her memory clinic, but their cognitive issues were due to depression, not dementia.
It is important to identify subtle cognitive impairments. Dr. Santos recommended using the Saint Louis University Mental Status Examination, which she says is easier to use than the Montreal Cognitive Assessment.
Avoid Shaming
When managing patients who are potential cybercrime victims, she also suggests doctors be careful about their tone and their attitude. “Don’t shame someone for becoming a victim because it happens to everyone.”
When patients show signs of victimization, physicians could consider asking about their Internet use, social media practices, and general safety surrounding their finances.
They should emphasize the importance of protecting accounts through strong passwords, multifactor authentication when possible, and avoidance of sharing personal information with anyone who calls, emails, or texts.
Clinicians might also consider asking patients to review bills for new or unusual charges, check their bank account statements for withdrawals they didn’t make, and review credit reports for accounts in their name they don’t recognize.
Clinicians should also encourage patients to have a healthcare proxy, power of attorney, and advanced directives and recommend resources that can help victims. These include:
Federal Trade Commission (to report identity theft): https://reportfraud.ftc.gov; https://www.identitytheft.gov
Federal Bureau of Investigation – Internet Crime and Complaint Center https://www.ic3.gov
National Elder Fraud Hotline (1-833-372-8311) or 1-833-FRAUD-11
http://ovc.ojp.gov/program/stop-elder-fraud/providing-help-restoring-hope
A version of this article appeared on Medscape.com.
Seniors are increasingly targeted in ever-sophisticated online financial cybercrimes, but mental health clinicians can play a key role in protecting their patients.
Elizabeth J. Santos, MD, clinical chief, Division of Geriatric Mental Health & Memory Care, and associate professor of psychiatry, neurology & medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York, provided tips to attendees of the American Psychiatric Association (APA) 2024 Annual Meeting, and elaborated on these for this news organization.
Cybercrimes targeting seniors are common. A 2023 University of Michigan National Poll on Healthy Aging found 75% of adults aged 50-80 years experienced a fraud attempt either online or by phone, text, email, or mail in the past 2 years.
The poll found about 30% of respondents reported experiencing financial fraud, which could involve compromising credit cards, hacking bank accounts, or identity theft.
Older age is a risk factor for cybercrime. Seniors may have lower cognitive functioning and/or impaired decision-making. In addition, they are often socially isolated, dependent on others, and have poor health and financial literacy.
Romance Scams Common
Romance scams are another common financial fraud. Stephanie Garayalde, MD, a geriatric psychiatrist at the University of Florida, Gainesville, Florida, and another presenter at the APA session, used the example of Mr. L, a 74-year-old outpatient under treatment for depression who was unable to pay his rent.
Mr. L was giving money to his “girlfriend” he met online. Their relationship was totally virtual; she always had constant excuses for not meeting in person. He was funneling increasing funds to pay what he believed were medical bills and to bail her out of various other emergencies.
Once the fraud was discovered, Mr. L not only felt the loneliness of a lost romantic connection but also grappled with feelings of embarrassment and guilt.
“I see older patients who have been scammed who feel ashamed that they haven’t left enough money for their families,” said Dr. Santos.
Another well-known scam targets grandparents. Fraudsters sometimes use an artificial intelligence–generated voice mimicking a young family member and pretend to need money right away for bail or another problem.
In such situations, Dr. Santos advises patients to “hang up and call your family” to verify the call “no matter what the person says or who they sound like.”
Scammers may impersonate government officials to try to get social insurance information. Dr. Santos stresses the importance of never giving out this information. “If someone says they’re from your bank or a government agency like the IRS, hang up and call the bank or agency yourself.”
Evidence suggests this and other cybercrimes are on the rise. The Federal Bureau of Investigation’s Internet Crime Complaint Center received 888,000 complaints in 2023, a 10% increase from 2022, and losses of about $12.5 billion, which is a 22% increase over 2022.
It’s not that uncommon for the same older person to be scammed by numerous people and fall for it again and again, said Dr. Santos.
To mitigate the risk to this vulnerable group, researchers at the University of Central Florida, Orlando, Florida, are developing a scam screener for the elderly that will provide tools to help doctors screen older adults. The screen will focus on identifying factors that make victims most vulnerable, including seniors’ ability to think critically, a necessary skill for guarding against cybercrime.
Red Flags
In the meantime, Dr. Santos identified red flags for clinicians. Patients may show deviations in their typical behaviors; for example, they may seem sadder, more subdued, or more withdrawn than usual.
As loneliness and isolation can be a signal of victimization, “ask patients about their connectedness and be suspicious if the connectedness is all virtual,” she said.
Learning about the quality of their relationships is also important. “Instead of asking the superficial question of ‘Do you have friends’, ask ‘How do you talk to your friends? Are you actually getting out and meeting them?’”
If patients report they have never actually seen these so-called friends in-person, it should raise a red flag.
Another clue something may be amiss is “needing to be on their device or be home to get a call at a certain time.” Dr. Santos recalled a patient whose cell phone rang constantly during an evaluation, even after she had changed her phone number several times. “The scammers kept tracking her down,” she said.
Patients who are victims of cybercrime may stop taking their medications, fail to follow up on ordered tests, or miss paying for medical services.
Dr. Santos recommended screening for conditions known to be linked to cybercrime victimization such as depression. One of her patients was attending her memory clinic, but their cognitive issues were due to depression, not dementia.
It is important to identify subtle cognitive impairments. Dr. Santos recommended using the Saint Louis University Mental Status Examination, which she says is easier to use than the Montreal Cognitive Assessment.
Avoid Shaming
When managing patients who are potential cybercrime victims, she also suggests doctors be careful about their tone and their attitude. “Don’t shame someone for becoming a victim because it happens to everyone.”
When patients show signs of victimization, physicians could consider asking about their Internet use, social media practices, and general safety surrounding their finances.
They should emphasize the importance of protecting accounts through strong passwords, multifactor authentication when possible, and avoidance of sharing personal information with anyone who calls, emails, or texts.
Clinicians might also consider asking patients to review bills for new or unusual charges, check their bank account statements for withdrawals they didn’t make, and review credit reports for accounts in their name they don’t recognize.
Clinicians should also encourage patients to have a healthcare proxy, power of attorney, and advanced directives and recommend resources that can help victims. These include:
Federal Trade Commission (to report identity theft): https://reportfraud.ftc.gov; https://www.identitytheft.gov
Federal Bureau of Investigation – Internet Crime and Complaint Center https://www.ic3.gov
National Elder Fraud Hotline (1-833-372-8311) or 1-833-FRAUD-11
http://ovc.ojp.gov/program/stop-elder-fraud/providing-help-restoring-hope
A version of this article appeared on Medscape.com.
Internet Use Good for Mental Well-Being?
Contrary to previous research that suggests internet use can have a deleterious effect on mental health, a new study of more than 2 million individuals suggested it can actually enhance well-being.
Between 2006 and 2021, investigators studied more than 2 million people between the ages of 15 and 99 years in 168 countries, focusing on their psychological well-being and their use of the internet. Many of the included countries have rarely or never been studied in this connection.
“We were surprised to find a positive correlation between well-being and internet use across the majority of the thousands of models we used for our analysis,” lead author Matti Vuorre, PhD, of Tilburg University, Tilburg, the Netherlands, and a research associate at Oxford Internet Institute in England, said in a news release.
The study was published online on May 13 in Technology, Mind, and Behavior.
A Global Phenomenon
Coauthor Andrew K. Przybylski, PhD, professor of human behavior and technology at Oxford Internet Institute, explained the motive for conducting the study.
“Whilst internet technologies and their platforms and their potential psychological consequences remain debated, research to date has been inconclusive and of limited geographic and demographic scope,” he said.
He noted that the “overwhelming majority” of studies have focused on the Global North and on younger people and “ignoring the fact that the penetration of the internet has been, and continues to be, a global phenomenon.”
The researchers set out to address this gap by analyzing “how internet access, mobility internet access, and active internet use might predict psychological well-being on a global level across the life stages,” Dr. Przybylski continued. “To our knowledge, no other research has directly grappled with these issues and addressed the worldwide scope of the debate.”
To study internet use, the investigators analyzed data from the 2022 Gallup World Poll, a nationally representative survey of each country’s civilian, non-institutionalized adult population (ie, aged ≥ 15 years), conducted between 2002 and 2022. The poll assessed well-being using face-to-face, as well as phone interviews, conducted by local interviewers in the respondents’ native languages.
The total sample size included 2,414,295 adults drawn from 186 countries (53.1% women), drawn from countries that included those located in Latin America, Asia, and Africa.
The researchers examined eight indicators of well-being: life satisfaction, daily negative and positive experiences, two indices of social well-being, physical well-being, community well-being, and experiences of purpose.
Covariates included respondents’ income, education, work, relationship status, the ability to meet basic needs (food and shelter), and whether they reported having health problems.
Greater Life Satisfaction
The researchers conducted a “multiverse” of 33,792 types of analyses, researching the average differences in well-being between individuals who had access to mobile internet or had used the internet in the past 7 days.
They found that for the average country, those who had access to the internet reported approximately 0.08 units greater life satisfaction, positive experiences, and social life satisfaction and 0.06 units lower negative experience than those without access.
They also reported approximately 0.08 units greater experiences of purpose and 0.1 unit greater physical, 0.02 units greater community, and 0.08 units greater social well-being than individuals without access.
Being an active internet user was associated with a 0.03- to 0.08-unit increase in life satisfaction, positive experiences, social well-being, and physical well-being and a 0.04-unit decrease in negative experiences. Access to a smartphone predicted increases of 0.06 and 0.07 units.
Although the standard deviations (SDs) of well-being outcomes were small (eg, the median life satisfaction difference was 0.36 SDs between individuals who did and did not have access to the internet), they were “not negligible.”
In fact, when the researchers examined the associations’ robustness across all analyses, they found that 84.9% resulted in positive and statistically significant associations between internet connectivity and well-being.
Of the 4.9% of associations between internet use and community well-being that were negative, most were observed among young women between the ages of 15 and 24 years.
While the researchers did not identify this as a causal relationship, they noted that this finding is consistent with previous reports of increased cyberbullying and negative associations between social media use and depressive symptoms in young women.
“Overall, we found that average associations were consistent across internet adoption predictors and well-being outcomes, with those who had access to or actively used the internet reporting meaningfully greater well-being than those who did not,” Dr. Przybylski said.
The study’s limitations included comparing individuals with each other, given that there “are likely myriad other feature of the human condition that are associated with both uptake of internet technologies and well-being in such a manner that they might case spurious associations or mask true associations,” the authors noted.
Moreover, longitudinal studies tracking participants over time can provide more information about the “contexts of how and why an individual might be affected by internet technologies and platforms.” In addition, the self-reported measures of technology might be “lacking.”
Dr. Przybylski hopes that the findings will “bring some greater context to the screen time debate; however, further work is still needed in this important area.”
He urged platform providers “to share their detailed data on user behavior with social scientists working in this field for transparent and independent scientific enquiry, to enable a more comprehensive understanding of internet technologies in our daily lives.”
A Starting Point
In a separate news release, Kevin McConway, PhD, MBA, emeritus professor of applied statistics, The Open University, Milton Keynes, England, noted that there has been “endless debate and considerable speculation on the possible effects of internet use on well-being, in general across all ages, but more specifically in relation to children and young people.”
The current study “certainly extends the available information beyond simple speculation and beyond previous studies that used participants mostly in relatively rich Northern countries,” noted Dr. McConway, who was not involved in the study.
However, he cautioned, the study is only “a starting point, and if nothing else, it casts very serious doubt on the view, held by some people, that the internet is bad for us all.”
In particular, the observational nature of the study meant that the positive associations between internet use and measure of well-being could have been caused by other factors and are not causative.
“It’s important to understand that none of the well-being measures used in this research has been properly validated by experts in psychological measurement,” said Dr. McConway.
No source of study funding was listed. Dr. Przybylski’s research is supported by the Huo Family Foundation and the Economic and Social Research Council. In the preceding 5 years, Dr. Przybylski has worked on research grants provided by the John Fell Fund, The Diana Award, and the children’s charity Barnardo’s. These research grants were paid to Dr. Przybylski’s employer, the Oxford Internet Institute. During this period, Dr. Przybylski has engaged unpaid consultations with several organizations including UNICEF, the Organization for Economic Co-operation and Development, Meta Inc., UKIE, UK Research and Innovation, The UK’s DCMS, The Office of the UK’s Chief Medical Officer, the Office of the US Surgeon General, The UK’s Academy of Medical Sciences, and the UK Parliament. There were no financial products or benefits resulting from these consultations. Dr. Vuorre reported no relevant financial relationships. Neither author reported any conflicts of interest. Dr. McConway is a trustee of the Science Media Center. However, his remarks are in the capacity of an independent professional statistician.
A version of this article appeared on Medscape.com.
Contrary to previous research that suggests internet use can have a deleterious effect on mental health, a new study of more than 2 million individuals suggested it can actually enhance well-being.
Between 2006 and 2021, investigators studied more than 2 million people between the ages of 15 and 99 years in 168 countries, focusing on their psychological well-being and their use of the internet. Many of the included countries have rarely or never been studied in this connection.
“We were surprised to find a positive correlation between well-being and internet use across the majority of the thousands of models we used for our analysis,” lead author Matti Vuorre, PhD, of Tilburg University, Tilburg, the Netherlands, and a research associate at Oxford Internet Institute in England, said in a news release.
The study was published online on May 13 in Technology, Mind, and Behavior.
A Global Phenomenon
Coauthor Andrew K. Przybylski, PhD, professor of human behavior and technology at Oxford Internet Institute, explained the motive for conducting the study.
“Whilst internet technologies and their platforms and their potential psychological consequences remain debated, research to date has been inconclusive and of limited geographic and demographic scope,” he said.
He noted that the “overwhelming majority” of studies have focused on the Global North and on younger people and “ignoring the fact that the penetration of the internet has been, and continues to be, a global phenomenon.”
The researchers set out to address this gap by analyzing “how internet access, mobility internet access, and active internet use might predict psychological well-being on a global level across the life stages,” Dr. Przybylski continued. “To our knowledge, no other research has directly grappled with these issues and addressed the worldwide scope of the debate.”
To study internet use, the investigators analyzed data from the 2022 Gallup World Poll, a nationally representative survey of each country’s civilian, non-institutionalized adult population (ie, aged ≥ 15 years), conducted between 2002 and 2022. The poll assessed well-being using face-to-face, as well as phone interviews, conducted by local interviewers in the respondents’ native languages.
The total sample size included 2,414,295 adults drawn from 186 countries (53.1% women), drawn from countries that included those located in Latin America, Asia, and Africa.
The researchers examined eight indicators of well-being: life satisfaction, daily negative and positive experiences, two indices of social well-being, physical well-being, community well-being, and experiences of purpose.
Covariates included respondents’ income, education, work, relationship status, the ability to meet basic needs (food and shelter), and whether they reported having health problems.
Greater Life Satisfaction
The researchers conducted a “multiverse” of 33,792 types of analyses, researching the average differences in well-being between individuals who had access to mobile internet or had used the internet in the past 7 days.
They found that for the average country, those who had access to the internet reported approximately 0.08 units greater life satisfaction, positive experiences, and social life satisfaction and 0.06 units lower negative experience than those without access.
They also reported approximately 0.08 units greater experiences of purpose and 0.1 unit greater physical, 0.02 units greater community, and 0.08 units greater social well-being than individuals without access.
Being an active internet user was associated with a 0.03- to 0.08-unit increase in life satisfaction, positive experiences, social well-being, and physical well-being and a 0.04-unit decrease in negative experiences. Access to a smartphone predicted increases of 0.06 and 0.07 units.
Although the standard deviations (SDs) of well-being outcomes were small (eg, the median life satisfaction difference was 0.36 SDs between individuals who did and did not have access to the internet), they were “not negligible.”
In fact, when the researchers examined the associations’ robustness across all analyses, they found that 84.9% resulted in positive and statistically significant associations between internet connectivity and well-being.
Of the 4.9% of associations between internet use and community well-being that were negative, most were observed among young women between the ages of 15 and 24 years.
While the researchers did not identify this as a causal relationship, they noted that this finding is consistent with previous reports of increased cyberbullying and negative associations between social media use and depressive symptoms in young women.
“Overall, we found that average associations were consistent across internet adoption predictors and well-being outcomes, with those who had access to or actively used the internet reporting meaningfully greater well-being than those who did not,” Dr. Przybylski said.
The study’s limitations included comparing individuals with each other, given that there “are likely myriad other feature of the human condition that are associated with both uptake of internet technologies and well-being in such a manner that they might case spurious associations or mask true associations,” the authors noted.
Moreover, longitudinal studies tracking participants over time can provide more information about the “contexts of how and why an individual might be affected by internet technologies and platforms.” In addition, the self-reported measures of technology might be “lacking.”
Dr. Przybylski hopes that the findings will “bring some greater context to the screen time debate; however, further work is still needed in this important area.”
He urged platform providers “to share their detailed data on user behavior with social scientists working in this field for transparent and independent scientific enquiry, to enable a more comprehensive understanding of internet technologies in our daily lives.”
A Starting Point
In a separate news release, Kevin McConway, PhD, MBA, emeritus professor of applied statistics, The Open University, Milton Keynes, England, noted that there has been “endless debate and considerable speculation on the possible effects of internet use on well-being, in general across all ages, but more specifically in relation to children and young people.”
The current study “certainly extends the available information beyond simple speculation and beyond previous studies that used participants mostly in relatively rich Northern countries,” noted Dr. McConway, who was not involved in the study.
However, he cautioned, the study is only “a starting point, and if nothing else, it casts very serious doubt on the view, held by some people, that the internet is bad for us all.”
In particular, the observational nature of the study meant that the positive associations between internet use and measure of well-being could have been caused by other factors and are not causative.
“It’s important to understand that none of the well-being measures used in this research has been properly validated by experts in psychological measurement,” said Dr. McConway.
No source of study funding was listed. Dr. Przybylski’s research is supported by the Huo Family Foundation and the Economic and Social Research Council. In the preceding 5 years, Dr. Przybylski has worked on research grants provided by the John Fell Fund, The Diana Award, and the children’s charity Barnardo’s. These research grants were paid to Dr. Przybylski’s employer, the Oxford Internet Institute. During this period, Dr. Przybylski has engaged unpaid consultations with several organizations including UNICEF, the Organization for Economic Co-operation and Development, Meta Inc., UKIE, UK Research and Innovation, The UK’s DCMS, The Office of the UK’s Chief Medical Officer, the Office of the US Surgeon General, The UK’s Academy of Medical Sciences, and the UK Parliament. There were no financial products or benefits resulting from these consultations. Dr. Vuorre reported no relevant financial relationships. Neither author reported any conflicts of interest. Dr. McConway is a trustee of the Science Media Center. However, his remarks are in the capacity of an independent professional statistician.
A version of this article appeared on Medscape.com.
Contrary to previous research that suggests internet use can have a deleterious effect on mental health, a new study of more than 2 million individuals suggested it can actually enhance well-being.
Between 2006 and 2021, investigators studied more than 2 million people between the ages of 15 and 99 years in 168 countries, focusing on their psychological well-being and their use of the internet. Many of the included countries have rarely or never been studied in this connection.
“We were surprised to find a positive correlation between well-being and internet use across the majority of the thousands of models we used for our analysis,” lead author Matti Vuorre, PhD, of Tilburg University, Tilburg, the Netherlands, and a research associate at Oxford Internet Institute in England, said in a news release.
The study was published online on May 13 in Technology, Mind, and Behavior.
A Global Phenomenon
Coauthor Andrew K. Przybylski, PhD, professor of human behavior and technology at Oxford Internet Institute, explained the motive for conducting the study.
“Whilst internet technologies and their platforms and their potential psychological consequences remain debated, research to date has been inconclusive and of limited geographic and demographic scope,” he said.
He noted that the “overwhelming majority” of studies have focused on the Global North and on younger people and “ignoring the fact that the penetration of the internet has been, and continues to be, a global phenomenon.”
The researchers set out to address this gap by analyzing “how internet access, mobility internet access, and active internet use might predict psychological well-being on a global level across the life stages,” Dr. Przybylski continued. “To our knowledge, no other research has directly grappled with these issues and addressed the worldwide scope of the debate.”
To study internet use, the investigators analyzed data from the 2022 Gallup World Poll, a nationally representative survey of each country’s civilian, non-institutionalized adult population (ie, aged ≥ 15 years), conducted between 2002 and 2022. The poll assessed well-being using face-to-face, as well as phone interviews, conducted by local interviewers in the respondents’ native languages.
The total sample size included 2,414,295 adults drawn from 186 countries (53.1% women), drawn from countries that included those located in Latin America, Asia, and Africa.
The researchers examined eight indicators of well-being: life satisfaction, daily negative and positive experiences, two indices of social well-being, physical well-being, community well-being, and experiences of purpose.
Covariates included respondents’ income, education, work, relationship status, the ability to meet basic needs (food and shelter), and whether they reported having health problems.
Greater Life Satisfaction
The researchers conducted a “multiverse” of 33,792 types of analyses, researching the average differences in well-being between individuals who had access to mobile internet or had used the internet in the past 7 days.
They found that for the average country, those who had access to the internet reported approximately 0.08 units greater life satisfaction, positive experiences, and social life satisfaction and 0.06 units lower negative experience than those without access.
They also reported approximately 0.08 units greater experiences of purpose and 0.1 unit greater physical, 0.02 units greater community, and 0.08 units greater social well-being than individuals without access.
Being an active internet user was associated with a 0.03- to 0.08-unit increase in life satisfaction, positive experiences, social well-being, and physical well-being and a 0.04-unit decrease in negative experiences. Access to a smartphone predicted increases of 0.06 and 0.07 units.
Although the standard deviations (SDs) of well-being outcomes were small (eg, the median life satisfaction difference was 0.36 SDs between individuals who did and did not have access to the internet), they were “not negligible.”
In fact, when the researchers examined the associations’ robustness across all analyses, they found that 84.9% resulted in positive and statistically significant associations between internet connectivity and well-being.
Of the 4.9% of associations between internet use and community well-being that were negative, most were observed among young women between the ages of 15 and 24 years.
While the researchers did not identify this as a causal relationship, they noted that this finding is consistent with previous reports of increased cyberbullying and negative associations between social media use and depressive symptoms in young women.
“Overall, we found that average associations were consistent across internet adoption predictors and well-being outcomes, with those who had access to or actively used the internet reporting meaningfully greater well-being than those who did not,” Dr. Przybylski said.
The study’s limitations included comparing individuals with each other, given that there “are likely myriad other feature of the human condition that are associated with both uptake of internet technologies and well-being in such a manner that they might case spurious associations or mask true associations,” the authors noted.
Moreover, longitudinal studies tracking participants over time can provide more information about the “contexts of how and why an individual might be affected by internet technologies and platforms.” In addition, the self-reported measures of technology might be “lacking.”
Dr. Przybylski hopes that the findings will “bring some greater context to the screen time debate; however, further work is still needed in this important area.”
He urged platform providers “to share their detailed data on user behavior with social scientists working in this field for transparent and independent scientific enquiry, to enable a more comprehensive understanding of internet technologies in our daily lives.”
A Starting Point
In a separate news release, Kevin McConway, PhD, MBA, emeritus professor of applied statistics, The Open University, Milton Keynes, England, noted that there has been “endless debate and considerable speculation on the possible effects of internet use on well-being, in general across all ages, but more specifically in relation to children and young people.”
The current study “certainly extends the available information beyond simple speculation and beyond previous studies that used participants mostly in relatively rich Northern countries,” noted Dr. McConway, who was not involved in the study.
However, he cautioned, the study is only “a starting point, and if nothing else, it casts very serious doubt on the view, held by some people, that the internet is bad for us all.”
In particular, the observational nature of the study meant that the positive associations between internet use and measure of well-being could have been caused by other factors and are not causative.
“It’s important to understand that none of the well-being measures used in this research has been properly validated by experts in psychological measurement,” said Dr. McConway.
No source of study funding was listed. Dr. Przybylski’s research is supported by the Huo Family Foundation and the Economic and Social Research Council. In the preceding 5 years, Dr. Przybylski has worked on research grants provided by the John Fell Fund, The Diana Award, and the children’s charity Barnardo’s. These research grants were paid to Dr. Przybylski’s employer, the Oxford Internet Institute. During this period, Dr. Przybylski has engaged unpaid consultations with several organizations including UNICEF, the Organization for Economic Co-operation and Development, Meta Inc., UKIE, UK Research and Innovation, The UK’s DCMS, The Office of the UK’s Chief Medical Officer, the Office of the US Surgeon General, The UK’s Academy of Medical Sciences, and the UK Parliament. There were no financial products or benefits resulting from these consultations. Dr. Vuorre reported no relevant financial relationships. Neither author reported any conflicts of interest. Dr. McConway is a trustee of the Science Media Center. However, his remarks are in the capacity of an independent professional statistician.
A version of this article appeared on Medscape.com.
CBT Tops Mindfulness Therapy for Prolonged Grief Disorder
Cognitive-behavioral therapy (CBT) is superior to mindfulness-based cognitive therapy (MT) for reducing symptom severity in patients with prolonged grief disorder, results from a randomized trial showed.
While patients receiving grief-focused CBT had a superior response compared with those receiving MT, participants in both groups experienced a significant reduction in symptoms 6 months after treatment.
“We emphasize that these results do not suggest that mindfulness-based therapy was not effective in treating grief-focused CBT, but rather that grief-focused CBT was relatively more effective in reducing prolonged grief disorder, depression, and grief-related cognitions than mindfulness-based cognitive therapy,” investigators, led by Richard Bryant, PhD, of the University of New South Wales, Sydney, Australia, wrote.
The findings were published online in JAMA Psychiatry.
Barrier to Treatment
Prolonged grief disorder can affect up to 10% of bereaved individuals and is associated with increased suicide risk, cancer, immunological dysfunction, cardiac events, and functional impairment.
One barrier to treatment for individuals with prolonged grief disorder is that the treatment process can be emotionally painful. Between 15% and 25% of patients with prolonged grief offered grief-focused CBT decline to participate because they are reluctant to focus on painful emotions surrounding the death of their loved one.
To compare grief-focused CBT with mindfulness-based CT, another psychotherapeutic treatment, investigators recruited 100 adults aged 18-70 years between 2012 and 2022.
Participants who met the criteria for prolonged grief disorder were randomized on a 1:1 basis to receive either grief-focused CBT (n = 50) or CT (n = 50). All assessors were blinded to the treatment condition.
Therapy in both groups included 11 weekly 90-minute individual sessions.
Participants were assessed posttreatment at the 6-month mark for prolonged grief disorder symptom severity with the Prolonged Grief (PG)-13 Scale. They were also assessed for symptoms of depression, anxiety, and self-reported quality of life.
Grief-focused CBT entailed education on prolonged grief disorder, monitoring of daily thoughts, revisiting the death memory for several sessions, reframing maladaptive grief-related thoughts, writing a letter to the deceased loved one, relapse prevention strategies, and goal setting.
Mindfulness-based CT was adapted to problematic grief and began with psychoeducation about prolonged grief disorder. The additional sessions entailed mindfulness-orienting exercises, meditation, body scans, and how mindfulness practices can be used to tolerate aversive emotions and thoughts or to manage grief reactions.
Participants were assessed at the end of their treatment and had a mean age of 47 years, and 87% were female. The majority (71%) were White, and 21% were African, Indigenous Australian, and Pacific Islander.
While participants in both groups had similar outcomes posttreatment, at the 6-month follow-up, grief-focused CBT led to more significant reductions in scores on the PG-13 scale compared with mindfulness-based CT (mean difference, 7.1 points; 95% CI, 1.6-12.5; P = .01) with a large between-group effect size (0.8; 95% CI, 0.2-1.3).
PG-13 scores range from 11 to 55, with higher scores indicating greater prolonged grief disorder severity.
Of note, both treatment groups had a significant reduction in prolonged grief disorder symptoms (mean difference, 11.3; 95% CI, 8.6-14.1; P < .001), with a large effect size (1.2; 95% CI, 0.9-1.5).
Grief-focused CBT also led to greater reductions in depression at 6 months as measured by the Beck Depression Inventory (mean difference, 6.6; 95% CI, 0.5-12.9; P = .04). Investigators noted that this finding was unexpected and “suggests that the greater reduction of depression in participants receiving grief-focused cognitive behavior therapy may be attributed to the superior reductions in prolonged grief disorder severity, thereby leading to downstream decreases in depression.”
The investigators noted several study limitations. Most participants were White, which limits the generalizability of the results to other races and ethnicities. Therapists were not blinded to treatment conditions, and investigators did not monitor participants’ therapeutic exercises that were to be practiced posttreatment until the 6-month mark.
The study was funded by the National Health and Medical Research Council. Dr. Bryant served on the ICD Eleventh Revision Working Group on the Classification of Stress-Related Disorders. No other disclosures were reported.
A version of this article appeared on Medscape.com .
Cognitive-behavioral therapy (CBT) is superior to mindfulness-based cognitive therapy (MT) for reducing symptom severity in patients with prolonged grief disorder, results from a randomized trial showed.
While patients receiving grief-focused CBT had a superior response compared with those receiving MT, participants in both groups experienced a significant reduction in symptoms 6 months after treatment.
“We emphasize that these results do not suggest that mindfulness-based therapy was not effective in treating grief-focused CBT, but rather that grief-focused CBT was relatively more effective in reducing prolonged grief disorder, depression, and grief-related cognitions than mindfulness-based cognitive therapy,” investigators, led by Richard Bryant, PhD, of the University of New South Wales, Sydney, Australia, wrote.
The findings were published online in JAMA Psychiatry.
Barrier to Treatment
Prolonged grief disorder can affect up to 10% of bereaved individuals and is associated with increased suicide risk, cancer, immunological dysfunction, cardiac events, and functional impairment.
One barrier to treatment for individuals with prolonged grief disorder is that the treatment process can be emotionally painful. Between 15% and 25% of patients with prolonged grief offered grief-focused CBT decline to participate because they are reluctant to focus on painful emotions surrounding the death of their loved one.
To compare grief-focused CBT with mindfulness-based CT, another psychotherapeutic treatment, investigators recruited 100 adults aged 18-70 years between 2012 and 2022.
Participants who met the criteria for prolonged grief disorder were randomized on a 1:1 basis to receive either grief-focused CBT (n = 50) or CT (n = 50). All assessors were blinded to the treatment condition.
Therapy in both groups included 11 weekly 90-minute individual sessions.
Participants were assessed posttreatment at the 6-month mark for prolonged grief disorder symptom severity with the Prolonged Grief (PG)-13 Scale. They were also assessed for symptoms of depression, anxiety, and self-reported quality of life.
Grief-focused CBT entailed education on prolonged grief disorder, monitoring of daily thoughts, revisiting the death memory for several sessions, reframing maladaptive grief-related thoughts, writing a letter to the deceased loved one, relapse prevention strategies, and goal setting.
Mindfulness-based CT was adapted to problematic grief and began with psychoeducation about prolonged grief disorder. The additional sessions entailed mindfulness-orienting exercises, meditation, body scans, and how mindfulness practices can be used to tolerate aversive emotions and thoughts or to manage grief reactions.
Participants were assessed at the end of their treatment and had a mean age of 47 years, and 87% were female. The majority (71%) were White, and 21% were African, Indigenous Australian, and Pacific Islander.
While participants in both groups had similar outcomes posttreatment, at the 6-month follow-up, grief-focused CBT led to more significant reductions in scores on the PG-13 scale compared with mindfulness-based CT (mean difference, 7.1 points; 95% CI, 1.6-12.5; P = .01) with a large between-group effect size (0.8; 95% CI, 0.2-1.3).
PG-13 scores range from 11 to 55, with higher scores indicating greater prolonged grief disorder severity.
Of note, both treatment groups had a significant reduction in prolonged grief disorder symptoms (mean difference, 11.3; 95% CI, 8.6-14.1; P < .001), with a large effect size (1.2; 95% CI, 0.9-1.5).
Grief-focused CBT also led to greater reductions in depression at 6 months as measured by the Beck Depression Inventory (mean difference, 6.6; 95% CI, 0.5-12.9; P = .04). Investigators noted that this finding was unexpected and “suggests that the greater reduction of depression in participants receiving grief-focused cognitive behavior therapy may be attributed to the superior reductions in prolonged grief disorder severity, thereby leading to downstream decreases in depression.”
The investigators noted several study limitations. Most participants were White, which limits the generalizability of the results to other races and ethnicities. Therapists were not blinded to treatment conditions, and investigators did not monitor participants’ therapeutic exercises that were to be practiced posttreatment until the 6-month mark.
The study was funded by the National Health and Medical Research Council. Dr. Bryant served on the ICD Eleventh Revision Working Group on the Classification of Stress-Related Disorders. No other disclosures were reported.
A version of this article appeared on Medscape.com .
Cognitive-behavioral therapy (CBT) is superior to mindfulness-based cognitive therapy (MT) for reducing symptom severity in patients with prolonged grief disorder, results from a randomized trial showed.
While patients receiving grief-focused CBT had a superior response compared with those receiving MT, participants in both groups experienced a significant reduction in symptoms 6 months after treatment.
“We emphasize that these results do not suggest that mindfulness-based therapy was not effective in treating grief-focused CBT, but rather that grief-focused CBT was relatively more effective in reducing prolonged grief disorder, depression, and grief-related cognitions than mindfulness-based cognitive therapy,” investigators, led by Richard Bryant, PhD, of the University of New South Wales, Sydney, Australia, wrote.
The findings were published online in JAMA Psychiatry.
Barrier to Treatment
Prolonged grief disorder can affect up to 10% of bereaved individuals and is associated with increased suicide risk, cancer, immunological dysfunction, cardiac events, and functional impairment.
One barrier to treatment for individuals with prolonged grief disorder is that the treatment process can be emotionally painful. Between 15% and 25% of patients with prolonged grief offered grief-focused CBT decline to participate because they are reluctant to focus on painful emotions surrounding the death of their loved one.
To compare grief-focused CBT with mindfulness-based CT, another psychotherapeutic treatment, investigators recruited 100 adults aged 18-70 years between 2012 and 2022.
Participants who met the criteria for prolonged grief disorder were randomized on a 1:1 basis to receive either grief-focused CBT (n = 50) or CT (n = 50). All assessors were blinded to the treatment condition.
Therapy in both groups included 11 weekly 90-minute individual sessions.
Participants were assessed posttreatment at the 6-month mark for prolonged grief disorder symptom severity with the Prolonged Grief (PG)-13 Scale. They were also assessed for symptoms of depression, anxiety, and self-reported quality of life.
Grief-focused CBT entailed education on prolonged grief disorder, monitoring of daily thoughts, revisiting the death memory for several sessions, reframing maladaptive grief-related thoughts, writing a letter to the deceased loved one, relapse prevention strategies, and goal setting.
Mindfulness-based CT was adapted to problematic grief and began with psychoeducation about prolonged grief disorder. The additional sessions entailed mindfulness-orienting exercises, meditation, body scans, and how mindfulness practices can be used to tolerate aversive emotions and thoughts or to manage grief reactions.
Participants were assessed at the end of their treatment and had a mean age of 47 years, and 87% were female. The majority (71%) were White, and 21% were African, Indigenous Australian, and Pacific Islander.
While participants in both groups had similar outcomes posttreatment, at the 6-month follow-up, grief-focused CBT led to more significant reductions in scores on the PG-13 scale compared with mindfulness-based CT (mean difference, 7.1 points; 95% CI, 1.6-12.5; P = .01) with a large between-group effect size (0.8; 95% CI, 0.2-1.3).
PG-13 scores range from 11 to 55, with higher scores indicating greater prolonged grief disorder severity.
Of note, both treatment groups had a significant reduction in prolonged grief disorder symptoms (mean difference, 11.3; 95% CI, 8.6-14.1; P < .001), with a large effect size (1.2; 95% CI, 0.9-1.5).
Grief-focused CBT also led to greater reductions in depression at 6 months as measured by the Beck Depression Inventory (mean difference, 6.6; 95% CI, 0.5-12.9; P = .04). Investigators noted that this finding was unexpected and “suggests that the greater reduction of depression in participants receiving grief-focused cognitive behavior therapy may be attributed to the superior reductions in prolonged grief disorder severity, thereby leading to downstream decreases in depression.”
The investigators noted several study limitations. Most participants were White, which limits the generalizability of the results to other races and ethnicities. Therapists were not blinded to treatment conditions, and investigators did not monitor participants’ therapeutic exercises that were to be practiced posttreatment until the 6-month mark.
The study was funded by the National Health and Medical Research Council. Dr. Bryant served on the ICD Eleventh Revision Working Group on the Classification of Stress-Related Disorders. No other disclosures were reported.
A version of this article appeared on Medscape.com .
Postpartum Depression
Follow-Up for Pediatric Depression Doubles With New Quality Initiative
TORONTO — An ambitious effort at a busy pediatrics clinic to improve follow-up in children and adolescents with a positive depression screen improved this quality metric, and it produced a fundamental change in approach.
“It was a big culture shift,” reported Landon B. Krantz, MD, a clinical fellow in the Division of General and Community Pediatrics at Cincinnati Children’s Hospital in Ohio. From a baseline position of screening, risk identification, and then referral, “we are now taking ownership of the process.”
Based on the substantial risk posed by significant levels of depression, guidelines recommend follow-up for any patient 12 years or older who has a positive screen, according to Dr. Krantz. At his center, they found only 19% had a documented follow-up within 30 days, even though timely intervention is important.
“Nearly half of suicide events in adolescents occur within 30 days after a positive PHQ-9 [9-question Patient Health Questionnaire] is completed,” said Dr. Krantz when presenting his data at the Pediatric Academic Societies annual meeting.
The issue has gained more urgency because of the substantial increase over the past several years in children presenting with depression and suicidal thoughts, according to Dr. Krantz. He said many are characterizing the upsurge as a mental health crisis in the pediatric age group.
Improving Follow-Up
. The goal at the outset was to increase the proportion to 35%.
“We know that a lot of children would receive follow-up at centers outside of our system,” said Dr. Krantz, explaining why the goal was relatively modest. Based on the likelihood that many follow-up visits would not be captured, he expected the final data would represent an underestimate.
Depression at baseline was defined as a score of 10 or higher on the PHQ-9 or any positive answer to item 9 on this screening tool, which asks specifically about thoughts of self-harm.
To be counted, follow-up had to be a documented encounter, whether by phone call, in-person visit, or telehealth visit.
“We needed patients to be checked. We did not count a prescription refill as a true follow-up,” Dr. Krantz specified.
There were numerous strategies implemented to improve follow-up, not least of which was an educational program to reinforce the importance and value of follow-up that was disseminated to clinicians in all of the participating clinics. Medical assistants were instructed to schedule a follow-up appointment for all patients who tested positive before they left the office. A target of 3 weeks was a strategy of overcorrection when so many patients were missing the initial 30-day window by just a few days.
The approach also involved an enhanced collaboration with psychologists to which patients were referred. Asking for expedited appointments when appropriate ensured that those at highest risk were prioritized, although Dr. Krantz said that this step was planned carefully to avoid overwhelming the mental health team.
“We monitored this and made sure it was not increasing the burden for psychologists from a capacity standpoint,” he said.
Other steps, like a depression action plan, which Dr. Krantz compared to an asthma action plan, were also implemented to reduce the risk of losing symptomatic patients before the chance for an effective treatment.
When compared with the 19% 30-day follow-up rate in the preintervention sample of 589 children, the 43.8% 30-day follow-up rate achieved in the 764 patients identified after implementation beat the original goal.
The improvement in follow-up was relatively consistent across all six clinics, which Dr. Krantz believes reflected a broad and shared change in a sense of responsibility for confirming that symptoms of depression were being addressed. Patients were still referred for psychological help, but referral was no longer considered enough.
“Children with mental health issues are still our patients in primary care,” said Dr. Krantz, who considers this an important change in orientation.
While the goal was to schedule patients for a follow-up at the time of a positive depression screen, Dr. Krantz described one important accommodation.
“The screen for depression was being performed in most cases during well visits, so patients and their families were not expecting to be discussing this issue,” he said. The diagnosis might be a particular surprise to parents who were not aware of any symptoms. In this case, Dr. Krantz said patients and families were given time to process the information and were contacted after a week to discuss further workup.
It is also notable that about one third of patients met the criteria for depression by answering positively to the PHQ-9 item on self-harm when they did not meet the 10 or more threshold depression score overall. In other words, these patients would have been missed without this criterion.
In the participating Cincinnati pediatric clinics, about 12%-13% of adolescents met the criteria for depression, which Dr. Krantz said is consistent with reports in the literature. He said the range is about 6%-24%.
Although outcomes were not tracked, there is evidence that early intervention for depression yields better outcomes than delayed intervention, according to Dr. Krantz. Based on approximately 600 positive screens for depression per year at his pediatric clinics, he estimated that his data predict at least 25% more patients will receive timely follow-up.
Seeking Solutions to a Growing Problem
There are several studies documenting the growing problem of adolescent depression and suicide and, for this reason, the topic is attracting a lot of attention, according to Corinna Rea, MD, MPH, a pediatrician working in the primary care center at Boston Children’s Hospital in Massachusetts.
Dr. Rea was not involved with the study, but when asked to comment, she said: “The results of this study were encouraging because we know that getting patients to care quickly is probably important.” She also agreed that referring patients with depression for care might not be enough, noting that a lot of patients do not follow up on recommendations to pursue a consultation or treatment.
“I am now involved in a project with the American Academy of Pediatrics to address this issue,” Dr. Rae said. She thinks that more work in this area is needed and agreed with Dr. Krantz that pediatricians should verify that children with depression are getting help even when other specialists are providing the treatment.
Dr. Krantz and Dr. Rae report no potential conflicts of interest.
TORONTO — An ambitious effort at a busy pediatrics clinic to improve follow-up in children and adolescents with a positive depression screen improved this quality metric, and it produced a fundamental change in approach.
“It was a big culture shift,” reported Landon B. Krantz, MD, a clinical fellow in the Division of General and Community Pediatrics at Cincinnati Children’s Hospital in Ohio. From a baseline position of screening, risk identification, and then referral, “we are now taking ownership of the process.”
Based on the substantial risk posed by significant levels of depression, guidelines recommend follow-up for any patient 12 years or older who has a positive screen, according to Dr. Krantz. At his center, they found only 19% had a documented follow-up within 30 days, even though timely intervention is important.
“Nearly half of suicide events in adolescents occur within 30 days after a positive PHQ-9 [9-question Patient Health Questionnaire] is completed,” said Dr. Krantz when presenting his data at the Pediatric Academic Societies annual meeting.
The issue has gained more urgency because of the substantial increase over the past several years in children presenting with depression and suicidal thoughts, according to Dr. Krantz. He said many are characterizing the upsurge as a mental health crisis in the pediatric age group.
Improving Follow-Up
. The goal at the outset was to increase the proportion to 35%.
“We know that a lot of children would receive follow-up at centers outside of our system,” said Dr. Krantz, explaining why the goal was relatively modest. Based on the likelihood that many follow-up visits would not be captured, he expected the final data would represent an underestimate.
Depression at baseline was defined as a score of 10 or higher on the PHQ-9 or any positive answer to item 9 on this screening tool, which asks specifically about thoughts of self-harm.
To be counted, follow-up had to be a documented encounter, whether by phone call, in-person visit, or telehealth visit.
“We needed patients to be checked. We did not count a prescription refill as a true follow-up,” Dr. Krantz specified.
There were numerous strategies implemented to improve follow-up, not least of which was an educational program to reinforce the importance and value of follow-up that was disseminated to clinicians in all of the participating clinics. Medical assistants were instructed to schedule a follow-up appointment for all patients who tested positive before they left the office. A target of 3 weeks was a strategy of overcorrection when so many patients were missing the initial 30-day window by just a few days.
The approach also involved an enhanced collaboration with psychologists to which patients were referred. Asking for expedited appointments when appropriate ensured that those at highest risk were prioritized, although Dr. Krantz said that this step was planned carefully to avoid overwhelming the mental health team.
“We monitored this and made sure it was not increasing the burden for psychologists from a capacity standpoint,” he said.
Other steps, like a depression action plan, which Dr. Krantz compared to an asthma action plan, were also implemented to reduce the risk of losing symptomatic patients before the chance for an effective treatment.
When compared with the 19% 30-day follow-up rate in the preintervention sample of 589 children, the 43.8% 30-day follow-up rate achieved in the 764 patients identified after implementation beat the original goal.
The improvement in follow-up was relatively consistent across all six clinics, which Dr. Krantz believes reflected a broad and shared change in a sense of responsibility for confirming that symptoms of depression were being addressed. Patients were still referred for psychological help, but referral was no longer considered enough.
“Children with mental health issues are still our patients in primary care,” said Dr. Krantz, who considers this an important change in orientation.
While the goal was to schedule patients for a follow-up at the time of a positive depression screen, Dr. Krantz described one important accommodation.
“The screen for depression was being performed in most cases during well visits, so patients and their families were not expecting to be discussing this issue,” he said. The diagnosis might be a particular surprise to parents who were not aware of any symptoms. In this case, Dr. Krantz said patients and families were given time to process the information and were contacted after a week to discuss further workup.
It is also notable that about one third of patients met the criteria for depression by answering positively to the PHQ-9 item on self-harm when they did not meet the 10 or more threshold depression score overall. In other words, these patients would have been missed without this criterion.
In the participating Cincinnati pediatric clinics, about 12%-13% of adolescents met the criteria for depression, which Dr. Krantz said is consistent with reports in the literature. He said the range is about 6%-24%.
Although outcomes were not tracked, there is evidence that early intervention for depression yields better outcomes than delayed intervention, according to Dr. Krantz. Based on approximately 600 positive screens for depression per year at his pediatric clinics, he estimated that his data predict at least 25% more patients will receive timely follow-up.
Seeking Solutions to a Growing Problem
There are several studies documenting the growing problem of adolescent depression and suicide and, for this reason, the topic is attracting a lot of attention, according to Corinna Rea, MD, MPH, a pediatrician working in the primary care center at Boston Children’s Hospital in Massachusetts.
Dr. Rea was not involved with the study, but when asked to comment, she said: “The results of this study were encouraging because we know that getting patients to care quickly is probably important.” She also agreed that referring patients with depression for care might not be enough, noting that a lot of patients do not follow up on recommendations to pursue a consultation or treatment.
“I am now involved in a project with the American Academy of Pediatrics to address this issue,” Dr. Rae said. She thinks that more work in this area is needed and agreed with Dr. Krantz that pediatricians should verify that children with depression are getting help even when other specialists are providing the treatment.
Dr. Krantz and Dr. Rae report no potential conflicts of interest.
TORONTO — An ambitious effort at a busy pediatrics clinic to improve follow-up in children and adolescents with a positive depression screen improved this quality metric, and it produced a fundamental change in approach.
“It was a big culture shift,” reported Landon B. Krantz, MD, a clinical fellow in the Division of General and Community Pediatrics at Cincinnati Children’s Hospital in Ohio. From a baseline position of screening, risk identification, and then referral, “we are now taking ownership of the process.”
Based on the substantial risk posed by significant levels of depression, guidelines recommend follow-up for any patient 12 years or older who has a positive screen, according to Dr. Krantz. At his center, they found only 19% had a documented follow-up within 30 days, even though timely intervention is important.
“Nearly half of suicide events in adolescents occur within 30 days after a positive PHQ-9 [9-question Patient Health Questionnaire] is completed,” said Dr. Krantz when presenting his data at the Pediatric Academic Societies annual meeting.
The issue has gained more urgency because of the substantial increase over the past several years in children presenting with depression and suicidal thoughts, according to Dr. Krantz. He said many are characterizing the upsurge as a mental health crisis in the pediatric age group.
Improving Follow-Up
. The goal at the outset was to increase the proportion to 35%.
“We know that a lot of children would receive follow-up at centers outside of our system,” said Dr. Krantz, explaining why the goal was relatively modest. Based on the likelihood that many follow-up visits would not be captured, he expected the final data would represent an underestimate.
Depression at baseline was defined as a score of 10 or higher on the PHQ-9 or any positive answer to item 9 on this screening tool, which asks specifically about thoughts of self-harm.
To be counted, follow-up had to be a documented encounter, whether by phone call, in-person visit, or telehealth visit.
“We needed patients to be checked. We did not count a prescription refill as a true follow-up,” Dr. Krantz specified.
There were numerous strategies implemented to improve follow-up, not least of which was an educational program to reinforce the importance and value of follow-up that was disseminated to clinicians in all of the participating clinics. Medical assistants were instructed to schedule a follow-up appointment for all patients who tested positive before they left the office. A target of 3 weeks was a strategy of overcorrection when so many patients were missing the initial 30-day window by just a few days.
The approach also involved an enhanced collaboration with psychologists to which patients were referred. Asking for expedited appointments when appropriate ensured that those at highest risk were prioritized, although Dr. Krantz said that this step was planned carefully to avoid overwhelming the mental health team.
“We monitored this and made sure it was not increasing the burden for psychologists from a capacity standpoint,” he said.
Other steps, like a depression action plan, which Dr. Krantz compared to an asthma action plan, were also implemented to reduce the risk of losing symptomatic patients before the chance for an effective treatment.
When compared with the 19% 30-day follow-up rate in the preintervention sample of 589 children, the 43.8% 30-day follow-up rate achieved in the 764 patients identified after implementation beat the original goal.
The improvement in follow-up was relatively consistent across all six clinics, which Dr. Krantz believes reflected a broad and shared change in a sense of responsibility for confirming that symptoms of depression were being addressed. Patients were still referred for psychological help, but referral was no longer considered enough.
“Children with mental health issues are still our patients in primary care,” said Dr. Krantz, who considers this an important change in orientation.
While the goal was to schedule patients for a follow-up at the time of a positive depression screen, Dr. Krantz described one important accommodation.
“The screen for depression was being performed in most cases during well visits, so patients and their families were not expecting to be discussing this issue,” he said. The diagnosis might be a particular surprise to parents who were not aware of any symptoms. In this case, Dr. Krantz said patients and families were given time to process the information and were contacted after a week to discuss further workup.
It is also notable that about one third of patients met the criteria for depression by answering positively to the PHQ-9 item on self-harm when they did not meet the 10 or more threshold depression score overall. In other words, these patients would have been missed without this criterion.
In the participating Cincinnati pediatric clinics, about 12%-13% of adolescents met the criteria for depression, which Dr. Krantz said is consistent with reports in the literature. He said the range is about 6%-24%.
Although outcomes were not tracked, there is evidence that early intervention for depression yields better outcomes than delayed intervention, according to Dr. Krantz. Based on approximately 600 positive screens for depression per year at his pediatric clinics, he estimated that his data predict at least 25% more patients will receive timely follow-up.
Seeking Solutions to a Growing Problem
There are several studies documenting the growing problem of adolescent depression and suicide and, for this reason, the topic is attracting a lot of attention, according to Corinna Rea, MD, MPH, a pediatrician working in the primary care center at Boston Children’s Hospital in Massachusetts.
Dr. Rea was not involved with the study, but when asked to comment, she said: “The results of this study were encouraging because we know that getting patients to care quickly is probably important.” She also agreed that referring patients with depression for care might not be enough, noting that a lot of patients do not follow up on recommendations to pursue a consultation or treatment.
“I am now involved in a project with the American Academy of Pediatrics to address this issue,” Dr. Rae said. She thinks that more work in this area is needed and agreed with Dr. Krantz that pediatricians should verify that children with depression are getting help even when other specialists are providing the treatment.
Dr. Krantz and Dr. Rae report no potential conflicts of interest.
FROM PAS 2024