Sexual health care for disabled youth: Tough and getting tougher

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Tue, 10/25/2022 - 15:53

The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Dr. Thew said.

The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Dr. Thew, a nurse practitioner, said.

Dr. Thew said she’s thankful that tragic case occurred before 2022. After the United States Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Dr. Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)

Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced health care providers.

The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Dr. Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality.
 

Statistics: How many?

Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12-17 years have special health care needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16-20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the United States Centers for Disease Control and Prevention. Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
 

Addressing common issues, concerns

April Kayser is a health educator for the Multnomah County Health Department, Portland, Ore. In 2016, Ms. Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project – short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities – at Oregon Health and Science University (OHSU).

From their findings, the researchers compiled guidelines. They provided scenarios that health care providers need to be aware of and that they need to be ready to address:

  • A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
  • A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
  • A 17-year-old boy wants to ask out another student, who is 15.
 

 

Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a health care provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”

One finding stood out: Health care providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Ms. Kayser said. Yet in her experience, she said, health care professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”

Health care providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.

Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.

In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.

The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the less than 1%-6.6% estimates that are based on hospital discharge data.

Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and are more likely to have preterm and low-birthweight babies.
 

Clinicians play an important role

Dr. Horner-Johnson agreed with the finding from the Multnomah County survey that health care providers play an important role in providing those with intellectual and developmental disabilities reproductive health care that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.

Dr. Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question – ‘Would you like to become pregnant in the next year?’ – of every woman of reproductive age.”

Some women will not be able to answer that question, and health care providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.

Clinicians are becoming better at providing care to those with disabilities, Dr. Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.

Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob.gyns. said they felt equipped to manage the pregnancy of a woman with disabilities.

Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee. Challenges include the following:

  • Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
  • Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Dr. Thew said. The American Academy of Pediatrics outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
  • Some parents want to know how to obtain a complete hysterectomy for the patient – an option Dr. Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
  • After a discussion of all the options, an intrauterine device proves best for many. “That gives 7-8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
  • Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
  • Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.

Ms. Kayser, Dr. Horner-Johnson, and Dr. Thew have disclosed no relevant financial relationships.

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

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The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Dr. Thew said.

The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Dr. Thew, a nurse practitioner, said.

Dr. Thew said she’s thankful that tragic case occurred before 2022. After the United States Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Dr. Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)

Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced health care providers.

The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Dr. Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality.
 

Statistics: How many?

Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12-17 years have special health care needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16-20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the United States Centers for Disease Control and Prevention. Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
 

Addressing common issues, concerns

April Kayser is a health educator for the Multnomah County Health Department, Portland, Ore. In 2016, Ms. Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project – short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities – at Oregon Health and Science University (OHSU).

From their findings, the researchers compiled guidelines. They provided scenarios that health care providers need to be aware of and that they need to be ready to address:

  • A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
  • A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
  • A 17-year-old boy wants to ask out another student, who is 15.
 

 

Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a health care provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”

One finding stood out: Health care providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Ms. Kayser said. Yet in her experience, she said, health care professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”

Health care providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.

Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.

In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.

The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the less than 1%-6.6% estimates that are based on hospital discharge data.

Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and are more likely to have preterm and low-birthweight babies.
 

Clinicians play an important role

Dr. Horner-Johnson agreed with the finding from the Multnomah County survey that health care providers play an important role in providing those with intellectual and developmental disabilities reproductive health care that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.

Dr. Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question – ‘Would you like to become pregnant in the next year?’ – of every woman of reproductive age.”

Some women will not be able to answer that question, and health care providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.

Clinicians are becoming better at providing care to those with disabilities, Dr. Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.

Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob.gyns. said they felt equipped to manage the pregnancy of a woman with disabilities.

Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee. Challenges include the following:

  • Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
  • Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Dr. Thew said. The American Academy of Pediatrics outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
  • Some parents want to know how to obtain a complete hysterectomy for the patient – an option Dr. Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
  • After a discussion of all the options, an intrauterine device proves best for many. “That gives 7-8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
  • Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
  • Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.

Ms. Kayser, Dr. Horner-Johnson, and Dr. Thew have disclosed no relevant financial relationships.

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

The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Dr. Thew said.

The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Dr. Thew, a nurse practitioner, said.

Dr. Thew said she’s thankful that tragic case occurred before 2022. After the United States Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Dr. Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)

Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced health care providers.

The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Dr. Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality.
 

Statistics: How many?

Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12-17 years have special health care needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16-20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the United States Centers for Disease Control and Prevention. Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
 

Addressing common issues, concerns

April Kayser is a health educator for the Multnomah County Health Department, Portland, Ore. In 2016, Ms. Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project – short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities – at Oregon Health and Science University (OHSU).

From their findings, the researchers compiled guidelines. They provided scenarios that health care providers need to be aware of and that they need to be ready to address:

  • A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
  • A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
  • A 17-year-old boy wants to ask out another student, who is 15.
 

 

Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a health care provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”

One finding stood out: Health care providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Ms. Kayser said. Yet in her experience, she said, health care professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”

Health care providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.

Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.

In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.

The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the less than 1%-6.6% estimates that are based on hospital discharge data.

Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and are more likely to have preterm and low-birthweight babies.
 

Clinicians play an important role

Dr. Horner-Johnson agreed with the finding from the Multnomah County survey that health care providers play an important role in providing those with intellectual and developmental disabilities reproductive health care that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.

Dr. Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question – ‘Would you like to become pregnant in the next year?’ – of every woman of reproductive age.”

Some women will not be able to answer that question, and health care providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.

Clinicians are becoming better at providing care to those with disabilities, Dr. Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.

Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob.gyns. said they felt equipped to manage the pregnancy of a woman with disabilities.

Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee. Challenges include the following:

  • Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
  • Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Dr. Thew said. The American Academy of Pediatrics outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
  • Some parents want to know how to obtain a complete hysterectomy for the patient – an option Dr. Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
  • After a discussion of all the options, an intrauterine device proves best for many. “That gives 7-8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
  • Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
  • Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.

Ms. Kayser, Dr. Horner-Johnson, and Dr. Thew have disclosed no relevant financial relationships.

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

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Dupilumab-associated ocular surface disease in patients with AD: Unraveling the link

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Tue, 10/25/2022 - 15:37

Ocular surface disease (OSD) in patients with atopic dermatitis (AD) treated with dupilumab may be exacerbated rather than caused by the therapy, according to a study presented at the annual meeting of the International Society of Atopic Dermatitis.

In a prospective trial of 69 patients with AD starting dupilumab (Dupixent), baseline OSD was found in 91.3%, with about half of these patients reporting no symptoms, said investigator Roselie Achten, MD, from the National Expertise Center for Atopic Dermatitis at University Medical Center Utrecht, the Netherlands. Among these patients, ophthalmologic assessment revealed no OSD in 6 patients and mild OSD in 37 patients, but moderate and severe disease in 20 and 6 patients, respectively, she said, adding that 71% of the group also reported allergic conjunctivitis at baseline.

The patients enrolled in the study who started dupilumab were aged 36-38 years, with Eczema Area and Severity Index (EASI) scores of 14.7-16.5. Baseline ocular surface health was assessed with the Utrecht Ophthalmic Inflammatory and Allergic disease (UTOPIA) score. Tear fluid was collected to analyze biomarkers and dupilumab levels, and impression cytology was performed to collect conjunctival tissue cells for analysis of goblet cells. These measurements were repeated at 4 and 28 weeks after the start of therapy.

Over 28 weeks of treatment, 14.5% of patients experienced worsening of OSD, with worsening disease associated with a decline in the number of goblet cells. In addition, dupilumab treatment was associated with a significant decline in the production of Mucin5AC, suggesting a decline in function of the goblet cells. “Our hypothesis that the blocking effect of dupilumab on [interleukin-] IL-13 might lead to less goblet cells and less mucin production,” she explained.

In a subset of 48 patients, the researchers also detected significantly higher tear fluid dupilumab levels among those patients with more severe OSD, with comparable serum levels.

OSD has been reported in up to 34% of dupilumab-treated patients with AD and is the most frequently reported side-effect of this treatment, noted Dr. Achten. This side effect is not reported by other patients treated with dupilumab for other indications, she added, “suggesting that AD patients may have a predisposition to develop OSD during dupilumab treatment.”



Indeed, as recently noted by Vivian Shi, MD, from the department of dermatology, University of Arkansas for Medical Sciences, Little Rock, and colleagues, “for reasons not well understood, the incidence of conjunctivitis in dupilumab patients with asthma (0%-2.3%), chronic rhinosinusitis with nasal polyps (1.6%), or eosinophilic esophagitis (0%) is low to none; thus, patients with AD may be particularly susceptible.”

Dr. Achten said that dupilumab-treated patients with AD at her center are prescribed topical tacrolimus and ketotifen eye drops if they develop OSD.

Asked for comment, Melinda Gooderham, MD, who moderated the session, was impressed with the study. “I’d heard about the goblet cells, there were little bits of data here and there, but the tear analysis is something I hadn’t seen before. It was a nice series of experiments that pulled everything together,” she told this news organization. Dr. Gooderham, who is assistant professor at Queens University, in Kingston, Ontario, medical director at the SKiN Centre for Dermatology in Peterborough, Ontario, and consultant physician at Peterborough Regional Health Centre, said that she first began noticing dupilumab-related OSD as an early trial investigator for the drug. “When you put some patients on the drug it’s almost like tipping the balance – that little bit of mucin they’re dependent on is now reduced and it makes them more symptomatic,” she said.

Though she prescribes lubricating eye drops as prophylaxis for all her dupilumab-treated patients with AD, she recommends referring any patients who develop OSD to an ophthalmologist who is familiar with this specific side effect. “If they just see a random ophthalmologist who doesn’t know dupilumab, and doesn’t know the story around it, they could get any sort of diagnosis, or even be told to stop the medication altogether.”

The study was sponsored by Sanofi. Dr. Achten disclosed no other conflicts of interest. Dr. Gooderham is an investigator with Sanofi Genzyme for dupilumab.

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

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Ocular surface disease (OSD) in patients with atopic dermatitis (AD) treated with dupilumab may be exacerbated rather than caused by the therapy, according to a study presented at the annual meeting of the International Society of Atopic Dermatitis.

In a prospective trial of 69 patients with AD starting dupilumab (Dupixent), baseline OSD was found in 91.3%, with about half of these patients reporting no symptoms, said investigator Roselie Achten, MD, from the National Expertise Center for Atopic Dermatitis at University Medical Center Utrecht, the Netherlands. Among these patients, ophthalmologic assessment revealed no OSD in 6 patients and mild OSD in 37 patients, but moderate and severe disease in 20 and 6 patients, respectively, she said, adding that 71% of the group also reported allergic conjunctivitis at baseline.

The patients enrolled in the study who started dupilumab were aged 36-38 years, with Eczema Area and Severity Index (EASI) scores of 14.7-16.5. Baseline ocular surface health was assessed with the Utrecht Ophthalmic Inflammatory and Allergic disease (UTOPIA) score. Tear fluid was collected to analyze biomarkers and dupilumab levels, and impression cytology was performed to collect conjunctival tissue cells for analysis of goblet cells. These measurements were repeated at 4 and 28 weeks after the start of therapy.

Over 28 weeks of treatment, 14.5% of patients experienced worsening of OSD, with worsening disease associated with a decline in the number of goblet cells. In addition, dupilumab treatment was associated with a significant decline in the production of Mucin5AC, suggesting a decline in function of the goblet cells. “Our hypothesis that the blocking effect of dupilumab on [interleukin-] IL-13 might lead to less goblet cells and less mucin production,” she explained.

In a subset of 48 patients, the researchers also detected significantly higher tear fluid dupilumab levels among those patients with more severe OSD, with comparable serum levels.

OSD has been reported in up to 34% of dupilumab-treated patients with AD and is the most frequently reported side-effect of this treatment, noted Dr. Achten. This side effect is not reported by other patients treated with dupilumab for other indications, she added, “suggesting that AD patients may have a predisposition to develop OSD during dupilumab treatment.”



Indeed, as recently noted by Vivian Shi, MD, from the department of dermatology, University of Arkansas for Medical Sciences, Little Rock, and colleagues, “for reasons not well understood, the incidence of conjunctivitis in dupilumab patients with asthma (0%-2.3%), chronic rhinosinusitis with nasal polyps (1.6%), or eosinophilic esophagitis (0%) is low to none; thus, patients with AD may be particularly susceptible.”

Dr. Achten said that dupilumab-treated patients with AD at her center are prescribed topical tacrolimus and ketotifen eye drops if they develop OSD.

Asked for comment, Melinda Gooderham, MD, who moderated the session, was impressed with the study. “I’d heard about the goblet cells, there were little bits of data here and there, but the tear analysis is something I hadn’t seen before. It was a nice series of experiments that pulled everything together,” she told this news organization. Dr. Gooderham, who is assistant professor at Queens University, in Kingston, Ontario, medical director at the SKiN Centre for Dermatology in Peterborough, Ontario, and consultant physician at Peterborough Regional Health Centre, said that she first began noticing dupilumab-related OSD as an early trial investigator for the drug. “When you put some patients on the drug it’s almost like tipping the balance – that little bit of mucin they’re dependent on is now reduced and it makes them more symptomatic,” she said.

Though she prescribes lubricating eye drops as prophylaxis for all her dupilumab-treated patients with AD, she recommends referring any patients who develop OSD to an ophthalmologist who is familiar with this specific side effect. “If they just see a random ophthalmologist who doesn’t know dupilumab, and doesn’t know the story around it, they could get any sort of diagnosis, or even be told to stop the medication altogether.”

The study was sponsored by Sanofi. Dr. Achten disclosed no other conflicts of interest. Dr. Gooderham is an investigator with Sanofi Genzyme for dupilumab.

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

Ocular surface disease (OSD) in patients with atopic dermatitis (AD) treated with dupilumab may be exacerbated rather than caused by the therapy, according to a study presented at the annual meeting of the International Society of Atopic Dermatitis.

In a prospective trial of 69 patients with AD starting dupilumab (Dupixent), baseline OSD was found in 91.3%, with about half of these patients reporting no symptoms, said investigator Roselie Achten, MD, from the National Expertise Center for Atopic Dermatitis at University Medical Center Utrecht, the Netherlands. Among these patients, ophthalmologic assessment revealed no OSD in 6 patients and mild OSD in 37 patients, but moderate and severe disease in 20 and 6 patients, respectively, she said, adding that 71% of the group also reported allergic conjunctivitis at baseline.

The patients enrolled in the study who started dupilumab were aged 36-38 years, with Eczema Area and Severity Index (EASI) scores of 14.7-16.5. Baseline ocular surface health was assessed with the Utrecht Ophthalmic Inflammatory and Allergic disease (UTOPIA) score. Tear fluid was collected to analyze biomarkers and dupilumab levels, and impression cytology was performed to collect conjunctival tissue cells for analysis of goblet cells. These measurements were repeated at 4 and 28 weeks after the start of therapy.

Over 28 weeks of treatment, 14.5% of patients experienced worsening of OSD, with worsening disease associated with a decline in the number of goblet cells. In addition, dupilumab treatment was associated with a significant decline in the production of Mucin5AC, suggesting a decline in function of the goblet cells. “Our hypothesis that the blocking effect of dupilumab on [interleukin-] IL-13 might lead to less goblet cells and less mucin production,” she explained.

In a subset of 48 patients, the researchers also detected significantly higher tear fluid dupilumab levels among those patients with more severe OSD, with comparable serum levels.

OSD has been reported in up to 34% of dupilumab-treated patients with AD and is the most frequently reported side-effect of this treatment, noted Dr. Achten. This side effect is not reported by other patients treated with dupilumab for other indications, she added, “suggesting that AD patients may have a predisposition to develop OSD during dupilumab treatment.”



Indeed, as recently noted by Vivian Shi, MD, from the department of dermatology, University of Arkansas for Medical Sciences, Little Rock, and colleagues, “for reasons not well understood, the incidence of conjunctivitis in dupilumab patients with asthma (0%-2.3%), chronic rhinosinusitis with nasal polyps (1.6%), or eosinophilic esophagitis (0%) is low to none; thus, patients with AD may be particularly susceptible.”

Dr. Achten said that dupilumab-treated patients with AD at her center are prescribed topical tacrolimus and ketotifen eye drops if they develop OSD.

Asked for comment, Melinda Gooderham, MD, who moderated the session, was impressed with the study. “I’d heard about the goblet cells, there were little bits of data here and there, but the tear analysis is something I hadn’t seen before. It was a nice series of experiments that pulled everything together,” she told this news organization. Dr. Gooderham, who is assistant professor at Queens University, in Kingston, Ontario, medical director at the SKiN Centre for Dermatology in Peterborough, Ontario, and consultant physician at Peterborough Regional Health Centre, said that she first began noticing dupilumab-related OSD as an early trial investigator for the drug. “When you put some patients on the drug it’s almost like tipping the balance – that little bit of mucin they’re dependent on is now reduced and it makes them more symptomatic,” she said.

Though she prescribes lubricating eye drops as prophylaxis for all her dupilumab-treated patients with AD, she recommends referring any patients who develop OSD to an ophthalmologist who is familiar with this specific side effect. “If they just see a random ophthalmologist who doesn’t know dupilumab, and doesn’t know the story around it, they could get any sort of diagnosis, or even be told to stop the medication altogether.”

The study was sponsored by Sanofi. Dr. Achten disclosed no other conflicts of interest. Dr. Gooderham is an investigator with Sanofi Genzyme for dupilumab.

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

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Time to ditch clarithromycin for H. pylori?

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Time to ditch clarithromycin for H. pylori?

Rates of resistance to clarithromycin among Helicobacter pylori isolates in the United States and Europe are high enough to warrant discontinuation of empiric use of proton pump inhibitor (PPI)–based triple therapy that includes the antibiotic in these regions, a new study has found.

Overall, 22.2% of participants were resistant to clarithromycin – a rate that is above the currently recommended threshold of 15% or higher for avoidance of PPI-based triple therapy that includes clarithromycin.

The results “should put a very big nail in the coffin” of empiric use of such therapies, study investigator William Chey, MD, professor and chief, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, said in an interview.

Judith Kim, MD, a gastroenterologist at NYU Langone Health and clinical instructor of medicine at NYU Grossman School of Medicine, who wasn’t involved in the study, agrees.

“The use of PPI-based triple therapy is still common practice despite recent recommendations to avoid clarithromycin in areas with high resistance rates,” Dr. Kim told this news organization.

“This study shows that multiple parts of the United States and Europe have high resistance rates,” rendering clarithromycin-based regimens “more likely to ineffectively eradicate H pylori,” Dr. Kim said.

The study was published online in The American Journal of Gastroenterology.
 

Better options now available

Guidelines advise against the use of PPI-based triple regimens with clarithromycin for H. pylori infection in areas where resistance is 15% or higher or for patients who have previously received macrolides. However, up-to-date information on H. pylori antimicrobial resistance patterns is limited, especially in the United States.

Dr. Chey and colleagues assessed resistance rates to antibiotics commonly used to treat H. pylori in isolates from 907 adults with the infection in the United States and Europe. They included four U.S. subregions and five participating European countries.

In all U.S. subregions and European countries, clarithromycin resistance rates were above 15% except possibly in the United Kingdom, where the sample size was too small to provide a reliable estimate.

Three-quarters of the clarithromycin-resistant isolates were also resistant to metronidazole.

The study also found that, overall, 1.2% of patients had isolates that were resistant to amoxicillin, and 69.2% had isolates resistant to metronidazole. Resistance patterns were similar in the United States and Europe; metronidazole resistance was the most common (50%-79% of isolates), and amoxicillin was the least common (≤ 5%).

“Overall, these data provide robust evidence to support a shift away from the default empiric prescription of triple combinations containing a PPI and clarithromycin for H. pylori infection in the United States and Europe,” the study team writes.

The high prevalence of resistance, including dual resistance, highlights the need for antibiotic stewardship and resistance surveillance, as well as novel treatment strategies for H. pylori infection, they add.

Last spring, as previously reported, the United States Food and Drug Administration approved two vonoprazan-based treatments for H. pyloriVoquezna Triple Pak (vonoprazan, amoxicillin, clarithromycin) and Voquezna Dual Pak (vonoprazan, amoxicillin), both from Phathom Pharmaceuticals.

“Vonoprazan-based treatment may be superior to standard PPI triple therapy for clarithromycin-resistant infections based on prior studies and is a potential good option,” Dr. Kim said.

Still, she added, she “would most likely first recommend regimens that do not have clarithromycin, such as bismuth quadruple therapy.”
 

 

 

Study’s importance

Because the study drew upon the largest dataset to date on U.S. resistance rates, it should be used to more precisely guide first-line therapy decisions, said Richard Peek, Jr., MD, professor of medicine and director of gastroenterology at Vanderbilt University Medical Center, Nashville, Tenn.

“To date, there has been a dearth of information in the United States regarding H. pylori resistance rates, which has often led to the use of ineffective empiric therapies and inappropriate exposure to antibiotics,” Dr. Peek, who wasn’t involved in the study, told this news organization.

“These data are particularly exciting when viewed within the context of new genomic sequencing tests that can determine H. pylori resistance patterns using DNA isolated from the stomach or the stool,” he said.

Dr. Peek agreed that the recent approval of vonoprazan-based therapies “adds another regimen to the therapeutic armamentarium available for eradicating H. pylori, and its value seems to be particularly beneficial for eradication failures.”

The research was funded by Phathom Pharmaceuticals. Dr. Chey is a board member of the American College of Gastroenterology, GI on Demand, the International Foundation of Functional GI Disorders, and the Rome Foundation. He has received compensation as a consultant from AbbVie, Alfasigma, Allakos, Alnylam, Bayer, BioAmerica, Cosmo, Intrinsic Medicine, Ironwood Pharmaceuticals, QOL Medical, Nestle, Phathom Pharmaceuticals, RedHill Biopharma, Salix/Valeant, Takeda, Urovant, and Vibrant; grant/research support from BioAmerica, Commonwealth Diagnostics International, QOL Medical, Salix, and Vibrant; owns stock/stock options in GI on Demand and Modify Health; and owns patents relating to methods and kits for identifying food sensitivities and intolerances, digital manometry, and a rectal expulsion device. Dr. Peek and Dr. Kim report no relevant financial relationships.

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

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Rates of resistance to clarithromycin among Helicobacter pylori isolates in the United States and Europe are high enough to warrant discontinuation of empiric use of proton pump inhibitor (PPI)–based triple therapy that includes the antibiotic in these regions, a new study has found.

Overall, 22.2% of participants were resistant to clarithromycin – a rate that is above the currently recommended threshold of 15% or higher for avoidance of PPI-based triple therapy that includes clarithromycin.

The results “should put a very big nail in the coffin” of empiric use of such therapies, study investigator William Chey, MD, professor and chief, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, said in an interview.

Judith Kim, MD, a gastroenterologist at NYU Langone Health and clinical instructor of medicine at NYU Grossman School of Medicine, who wasn’t involved in the study, agrees.

“The use of PPI-based triple therapy is still common practice despite recent recommendations to avoid clarithromycin in areas with high resistance rates,” Dr. Kim told this news organization.

“This study shows that multiple parts of the United States and Europe have high resistance rates,” rendering clarithromycin-based regimens “more likely to ineffectively eradicate H pylori,” Dr. Kim said.

The study was published online in The American Journal of Gastroenterology.
 

Better options now available

Guidelines advise against the use of PPI-based triple regimens with clarithromycin for H. pylori infection in areas where resistance is 15% or higher or for patients who have previously received macrolides. However, up-to-date information on H. pylori antimicrobial resistance patterns is limited, especially in the United States.

Dr. Chey and colleagues assessed resistance rates to antibiotics commonly used to treat H. pylori in isolates from 907 adults with the infection in the United States and Europe. They included four U.S. subregions and five participating European countries.

In all U.S. subregions and European countries, clarithromycin resistance rates were above 15% except possibly in the United Kingdom, where the sample size was too small to provide a reliable estimate.

Three-quarters of the clarithromycin-resistant isolates were also resistant to metronidazole.

The study also found that, overall, 1.2% of patients had isolates that were resistant to amoxicillin, and 69.2% had isolates resistant to metronidazole. Resistance patterns were similar in the United States and Europe; metronidazole resistance was the most common (50%-79% of isolates), and amoxicillin was the least common (≤ 5%).

“Overall, these data provide robust evidence to support a shift away from the default empiric prescription of triple combinations containing a PPI and clarithromycin for H. pylori infection in the United States and Europe,” the study team writes.

The high prevalence of resistance, including dual resistance, highlights the need for antibiotic stewardship and resistance surveillance, as well as novel treatment strategies for H. pylori infection, they add.

Last spring, as previously reported, the United States Food and Drug Administration approved two vonoprazan-based treatments for H. pyloriVoquezna Triple Pak (vonoprazan, amoxicillin, clarithromycin) and Voquezna Dual Pak (vonoprazan, amoxicillin), both from Phathom Pharmaceuticals.

“Vonoprazan-based treatment may be superior to standard PPI triple therapy for clarithromycin-resistant infections based on prior studies and is a potential good option,” Dr. Kim said.

Still, she added, she “would most likely first recommend regimens that do not have clarithromycin, such as bismuth quadruple therapy.”
 

 

 

Study’s importance

Because the study drew upon the largest dataset to date on U.S. resistance rates, it should be used to more precisely guide first-line therapy decisions, said Richard Peek, Jr., MD, professor of medicine and director of gastroenterology at Vanderbilt University Medical Center, Nashville, Tenn.

“To date, there has been a dearth of information in the United States regarding H. pylori resistance rates, which has often led to the use of ineffective empiric therapies and inappropriate exposure to antibiotics,” Dr. Peek, who wasn’t involved in the study, told this news organization.

“These data are particularly exciting when viewed within the context of new genomic sequencing tests that can determine H. pylori resistance patterns using DNA isolated from the stomach or the stool,” he said.

Dr. Peek agreed that the recent approval of vonoprazan-based therapies “adds another regimen to the therapeutic armamentarium available for eradicating H. pylori, and its value seems to be particularly beneficial for eradication failures.”

The research was funded by Phathom Pharmaceuticals. Dr. Chey is a board member of the American College of Gastroenterology, GI on Demand, the International Foundation of Functional GI Disorders, and the Rome Foundation. He has received compensation as a consultant from AbbVie, Alfasigma, Allakos, Alnylam, Bayer, BioAmerica, Cosmo, Intrinsic Medicine, Ironwood Pharmaceuticals, QOL Medical, Nestle, Phathom Pharmaceuticals, RedHill Biopharma, Salix/Valeant, Takeda, Urovant, and Vibrant; grant/research support from BioAmerica, Commonwealth Diagnostics International, QOL Medical, Salix, and Vibrant; owns stock/stock options in GI on Demand and Modify Health; and owns patents relating to methods and kits for identifying food sensitivities and intolerances, digital manometry, and a rectal expulsion device. Dr. Peek and Dr. Kim report no relevant financial relationships.

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

Rates of resistance to clarithromycin among Helicobacter pylori isolates in the United States and Europe are high enough to warrant discontinuation of empiric use of proton pump inhibitor (PPI)–based triple therapy that includes the antibiotic in these regions, a new study has found.

Overall, 22.2% of participants were resistant to clarithromycin – a rate that is above the currently recommended threshold of 15% or higher for avoidance of PPI-based triple therapy that includes clarithromycin.

The results “should put a very big nail in the coffin” of empiric use of such therapies, study investigator William Chey, MD, professor and chief, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, said in an interview.

Judith Kim, MD, a gastroenterologist at NYU Langone Health and clinical instructor of medicine at NYU Grossman School of Medicine, who wasn’t involved in the study, agrees.

“The use of PPI-based triple therapy is still common practice despite recent recommendations to avoid clarithromycin in areas with high resistance rates,” Dr. Kim told this news organization.

“This study shows that multiple parts of the United States and Europe have high resistance rates,” rendering clarithromycin-based regimens “more likely to ineffectively eradicate H pylori,” Dr. Kim said.

The study was published online in The American Journal of Gastroenterology.
 

Better options now available

Guidelines advise against the use of PPI-based triple regimens with clarithromycin for H. pylori infection in areas where resistance is 15% or higher or for patients who have previously received macrolides. However, up-to-date information on H. pylori antimicrobial resistance patterns is limited, especially in the United States.

Dr. Chey and colleagues assessed resistance rates to antibiotics commonly used to treat H. pylori in isolates from 907 adults with the infection in the United States and Europe. They included four U.S. subregions and five participating European countries.

In all U.S. subregions and European countries, clarithromycin resistance rates were above 15% except possibly in the United Kingdom, where the sample size was too small to provide a reliable estimate.

Three-quarters of the clarithromycin-resistant isolates were also resistant to metronidazole.

The study also found that, overall, 1.2% of patients had isolates that were resistant to amoxicillin, and 69.2% had isolates resistant to metronidazole. Resistance patterns were similar in the United States and Europe; metronidazole resistance was the most common (50%-79% of isolates), and amoxicillin was the least common (≤ 5%).

“Overall, these data provide robust evidence to support a shift away from the default empiric prescription of triple combinations containing a PPI and clarithromycin for H. pylori infection in the United States and Europe,” the study team writes.

The high prevalence of resistance, including dual resistance, highlights the need for antibiotic stewardship and resistance surveillance, as well as novel treatment strategies for H. pylori infection, they add.

Last spring, as previously reported, the United States Food and Drug Administration approved two vonoprazan-based treatments for H. pyloriVoquezna Triple Pak (vonoprazan, amoxicillin, clarithromycin) and Voquezna Dual Pak (vonoprazan, amoxicillin), both from Phathom Pharmaceuticals.

“Vonoprazan-based treatment may be superior to standard PPI triple therapy for clarithromycin-resistant infections based on prior studies and is a potential good option,” Dr. Kim said.

Still, she added, she “would most likely first recommend regimens that do not have clarithromycin, such as bismuth quadruple therapy.”
 

 

 

Study’s importance

Because the study drew upon the largest dataset to date on U.S. resistance rates, it should be used to more precisely guide first-line therapy decisions, said Richard Peek, Jr., MD, professor of medicine and director of gastroenterology at Vanderbilt University Medical Center, Nashville, Tenn.

“To date, there has been a dearth of information in the United States regarding H. pylori resistance rates, which has often led to the use of ineffective empiric therapies and inappropriate exposure to antibiotics,” Dr. Peek, who wasn’t involved in the study, told this news organization.

“These data are particularly exciting when viewed within the context of new genomic sequencing tests that can determine H. pylori resistance patterns using DNA isolated from the stomach or the stool,” he said.

Dr. Peek agreed that the recent approval of vonoprazan-based therapies “adds another regimen to the therapeutic armamentarium available for eradicating H. pylori, and its value seems to be particularly beneficial for eradication failures.”

The research was funded by Phathom Pharmaceuticals. Dr. Chey is a board member of the American College of Gastroenterology, GI on Demand, the International Foundation of Functional GI Disorders, and the Rome Foundation. He has received compensation as a consultant from AbbVie, Alfasigma, Allakos, Alnylam, Bayer, BioAmerica, Cosmo, Intrinsic Medicine, Ironwood Pharmaceuticals, QOL Medical, Nestle, Phathom Pharmaceuticals, RedHill Biopharma, Salix/Valeant, Takeda, Urovant, and Vibrant; grant/research support from BioAmerica, Commonwealth Diagnostics International, QOL Medical, Salix, and Vibrant; owns stock/stock options in GI on Demand and Modify Health; and owns patents relating to methods and kits for identifying food sensitivities and intolerances, digital manometry, and a rectal expulsion device. Dr. Peek and Dr. Kim report no relevant financial relationships.

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

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VA Gets it Right on Suicide

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Ignore the critics, it’s America’s Warrior Partnership, not VA, whose veteran suicide data and conclusions are faulty

For years, the US Department of Veterans Affairs (VA) has painstakingly labored to track, research, and address veteran suicide. Their exceptional work was dealt an unwarranted blow a month ago with the publication of an incomplete report entitled Operation Deep Dive (OpDD). The $3.9 million study from America’s Warrior Partnership (AWP) examined death data of former service members in 8 states between 2014 and 2018. The interim report criticized the VA for minimizing the extent of veteran suicide, asserting, “former service members take their own lives each year at a rate approximately 2.4 times greater than previously reported by the VA.”

The sensational results were accepted at face value and immediately garnered negative nationwide headlines, with lawmakers, media outlets, and veterans rushing to impugn the VA. Senate Committee on Veterans’ Affairs Ranking Republican Member Jerry Moran of Kansas opined, “The disparity between the numbers of veteran suicides reported by the VA and [OpDD] is concerning. We need an honest assessment of the scope of the problem.” A U.S. Medicine headline stated “VA undercounted thousands of veteran suicides. [OpDD] posited daily suicide rate is 240% higher.” Fox News declared, “Veterans committing suicide at rate 2 times higher than VA data show: study,” as did Military Times, “Veterans suicide rate may be double federal estimates, study suggests.”

Disturbingly, those who echoed AWP’s claims got the story backward. It’s AWP, not VA, whose suicide data and conclusions are faulty.

For starters, the VA data encompasses veterans across all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In contrast, AWP inferred national veteran suicide figures based on partial, skewed data. As delineated by researchers in an in-press Military Medicine letter to the Editor, 7 of the 8 states sampled (Alabama, Florida, Maine, Massachusetts, Michigan, Minnesota, Montana, and Oregon) had suicide rates above the national average for the years under investigation. This factor alone overinflates AWP’s purported suicide numbers.

Additionally, AWP altered the definition of “taking one’s life” and then misapplied that designation. Conventionally, the term refers to suicide, but AWP used it to also include nonnatural deaths assessed by coroners and medical examiners as accidental or undetermined. Two examples of this self-injury mortality (SIM) are opioid overdoses and single-driver car crash deaths. AWP added suicides and SIMs to derive a total number of veterans who took their life and falsely contrasted that aggregate against the VA count of suicides. That’s like comparing the whole category of fruit to the subcategory of apples.

AWP should be applauded for drawing attention to and accounting for accidental and undetermined deaths. However, the standard protocol is to consider SIMs distinctly from suicides. Among the many reasons for precise labeling is so that grieving family members aren’t mistakenly informed that their loved one died by suicide. VA conveys the rate of veteran overdose deaths in separate reports, for example, the Veteran Drug Overdose Mortality, 2010-2019 publication. Those numbers were ignored in AWP’s calculations.

AWP was neglectful in another way. The second phase of the project—a deep examination of community-level factors preceding suicides and nonnatural deaths—began in 2019. This information was collected and analyzed through sociocultural death investigation (SDI) interviews of 3 to 4 family members, friends, and colleagues of the deceased. SDIs consisted of 19 factors, such as history of the veteran’s mental health problems, social connectedness, finances, group memberships, and access to firearms. However, the interim report omitted the preliminary analysis of these factors, which AWP stated would be made available this year.

OpDD conclusions were so unfounded that AWP’s analytic research partner, the University of Alabama, distanced itself from the interim report. “We were not consulted on the released figures,” Dr. Karl Hamner, the University of Alabama principal investigator on the study, told me. “We did not make any conclusions and we don’t endorse the reported findings about national rates or numbers per day. Nor did we make any statements about the VA’s data.”

As it happens, the VA’s 2022 National Veteran Suicide Prevention Annual Report was issued the same week as the OpDD report. VA found that veteran suicides decreased by 9.7% over the last 2 years, nearly twice the decrease for nonveterans. Yet, in a contemporaneous hearing of the House Committee on Veterans’ Affairs, AWP’s President and CEO Jim Lorraine testified that the progress preventing veteran suicide was “a disgrace” and “a failure.” He misattributed that it was VA (not AWP) that “must be more open and transparent about their data.”

Unsupported denigration of the VA tarnishes its reputation, undermining veterans’ trust in the health care system and increasing barriers to seeking needed services. More broadly, it fortifies those forces who wish to redirect allocations away from VA and towards non-VA veterans’ entities like AWP. The media and other stakeholders must take a lesson about getting the story straight before reflexively amplifying false accusations about the VA. Veterans deserve better.

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Russell Lemle is a Senior Policy Analyst, Veterans Healthcare Policy Institute

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Russell Lemle is a Senior Policy Analyst, Veterans Healthcare Policy Institute

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Ignore the critics, it’s America’s Warrior Partnership, not VA, whose veteran suicide data and conclusions are faulty
Ignore the critics, it’s America’s Warrior Partnership, not VA, whose veteran suicide data and conclusions are faulty

For years, the US Department of Veterans Affairs (VA) has painstakingly labored to track, research, and address veteran suicide. Their exceptional work was dealt an unwarranted blow a month ago with the publication of an incomplete report entitled Operation Deep Dive (OpDD). The $3.9 million study from America’s Warrior Partnership (AWP) examined death data of former service members in 8 states between 2014 and 2018. The interim report criticized the VA for minimizing the extent of veteran suicide, asserting, “former service members take their own lives each year at a rate approximately 2.4 times greater than previously reported by the VA.”

The sensational results were accepted at face value and immediately garnered negative nationwide headlines, with lawmakers, media outlets, and veterans rushing to impugn the VA. Senate Committee on Veterans’ Affairs Ranking Republican Member Jerry Moran of Kansas opined, “The disparity between the numbers of veteran suicides reported by the VA and [OpDD] is concerning. We need an honest assessment of the scope of the problem.” A U.S. Medicine headline stated “VA undercounted thousands of veteran suicides. [OpDD] posited daily suicide rate is 240% higher.” Fox News declared, “Veterans committing suicide at rate 2 times higher than VA data show: study,” as did Military Times, “Veterans suicide rate may be double federal estimates, study suggests.”

Disturbingly, those who echoed AWP’s claims got the story backward. It’s AWP, not VA, whose suicide data and conclusions are faulty.

For starters, the VA data encompasses veterans across all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In contrast, AWP inferred national veteran suicide figures based on partial, skewed data. As delineated by researchers in an in-press Military Medicine letter to the Editor, 7 of the 8 states sampled (Alabama, Florida, Maine, Massachusetts, Michigan, Minnesota, Montana, and Oregon) had suicide rates above the national average for the years under investigation. This factor alone overinflates AWP’s purported suicide numbers.

Additionally, AWP altered the definition of “taking one’s life” and then misapplied that designation. Conventionally, the term refers to suicide, but AWP used it to also include nonnatural deaths assessed by coroners and medical examiners as accidental or undetermined. Two examples of this self-injury mortality (SIM) are opioid overdoses and single-driver car crash deaths. AWP added suicides and SIMs to derive a total number of veterans who took their life and falsely contrasted that aggregate against the VA count of suicides. That’s like comparing the whole category of fruit to the subcategory of apples.

AWP should be applauded for drawing attention to and accounting for accidental and undetermined deaths. However, the standard protocol is to consider SIMs distinctly from suicides. Among the many reasons for precise labeling is so that grieving family members aren’t mistakenly informed that their loved one died by suicide. VA conveys the rate of veteran overdose deaths in separate reports, for example, the Veteran Drug Overdose Mortality, 2010-2019 publication. Those numbers were ignored in AWP’s calculations.

AWP was neglectful in another way. The second phase of the project—a deep examination of community-level factors preceding suicides and nonnatural deaths—began in 2019. This information was collected and analyzed through sociocultural death investigation (SDI) interviews of 3 to 4 family members, friends, and colleagues of the deceased. SDIs consisted of 19 factors, such as history of the veteran’s mental health problems, social connectedness, finances, group memberships, and access to firearms. However, the interim report omitted the preliminary analysis of these factors, which AWP stated would be made available this year.

OpDD conclusions were so unfounded that AWP’s analytic research partner, the University of Alabama, distanced itself from the interim report. “We were not consulted on the released figures,” Dr. Karl Hamner, the University of Alabama principal investigator on the study, told me. “We did not make any conclusions and we don’t endorse the reported findings about national rates or numbers per day. Nor did we make any statements about the VA’s data.”

As it happens, the VA’s 2022 National Veteran Suicide Prevention Annual Report was issued the same week as the OpDD report. VA found that veteran suicides decreased by 9.7% over the last 2 years, nearly twice the decrease for nonveterans. Yet, in a contemporaneous hearing of the House Committee on Veterans’ Affairs, AWP’s President and CEO Jim Lorraine testified that the progress preventing veteran suicide was “a disgrace” and “a failure.” He misattributed that it was VA (not AWP) that “must be more open and transparent about their data.”

Unsupported denigration of the VA tarnishes its reputation, undermining veterans’ trust in the health care system and increasing barriers to seeking needed services. More broadly, it fortifies those forces who wish to redirect allocations away from VA and towards non-VA veterans’ entities like AWP. The media and other stakeholders must take a lesson about getting the story straight before reflexively amplifying false accusations about the VA. Veterans deserve better.

For years, the US Department of Veterans Affairs (VA) has painstakingly labored to track, research, and address veteran suicide. Their exceptional work was dealt an unwarranted blow a month ago with the publication of an incomplete report entitled Operation Deep Dive (OpDD). The $3.9 million study from America’s Warrior Partnership (AWP) examined death data of former service members in 8 states between 2014 and 2018. The interim report criticized the VA for minimizing the extent of veteran suicide, asserting, “former service members take their own lives each year at a rate approximately 2.4 times greater than previously reported by the VA.”

The sensational results were accepted at face value and immediately garnered negative nationwide headlines, with lawmakers, media outlets, and veterans rushing to impugn the VA. Senate Committee on Veterans’ Affairs Ranking Republican Member Jerry Moran of Kansas opined, “The disparity between the numbers of veteran suicides reported by the VA and [OpDD] is concerning. We need an honest assessment of the scope of the problem.” A U.S. Medicine headline stated “VA undercounted thousands of veteran suicides. [OpDD] posited daily suicide rate is 240% higher.” Fox News declared, “Veterans committing suicide at rate 2 times higher than VA data show: study,” as did Military Times, “Veterans suicide rate may be double federal estimates, study suggests.”

Disturbingly, those who echoed AWP’s claims got the story backward. It’s AWP, not VA, whose suicide data and conclusions are faulty.

For starters, the VA data encompasses veterans across all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In contrast, AWP inferred national veteran suicide figures based on partial, skewed data. As delineated by researchers in an in-press Military Medicine letter to the Editor, 7 of the 8 states sampled (Alabama, Florida, Maine, Massachusetts, Michigan, Minnesota, Montana, and Oregon) had suicide rates above the national average for the years under investigation. This factor alone overinflates AWP’s purported suicide numbers.

Additionally, AWP altered the definition of “taking one’s life” and then misapplied that designation. Conventionally, the term refers to suicide, but AWP used it to also include nonnatural deaths assessed by coroners and medical examiners as accidental or undetermined. Two examples of this self-injury mortality (SIM) are opioid overdoses and single-driver car crash deaths. AWP added suicides and SIMs to derive a total number of veterans who took their life and falsely contrasted that aggregate against the VA count of suicides. That’s like comparing the whole category of fruit to the subcategory of apples.

AWP should be applauded for drawing attention to and accounting for accidental and undetermined deaths. However, the standard protocol is to consider SIMs distinctly from suicides. Among the many reasons for precise labeling is so that grieving family members aren’t mistakenly informed that their loved one died by suicide. VA conveys the rate of veteran overdose deaths in separate reports, for example, the Veteran Drug Overdose Mortality, 2010-2019 publication. Those numbers were ignored in AWP’s calculations.

AWP was neglectful in another way. The second phase of the project—a deep examination of community-level factors preceding suicides and nonnatural deaths—began in 2019. This information was collected and analyzed through sociocultural death investigation (SDI) interviews of 3 to 4 family members, friends, and colleagues of the deceased. SDIs consisted of 19 factors, such as history of the veteran’s mental health problems, social connectedness, finances, group memberships, and access to firearms. However, the interim report omitted the preliminary analysis of these factors, which AWP stated would be made available this year.

OpDD conclusions were so unfounded that AWP’s analytic research partner, the University of Alabama, distanced itself from the interim report. “We were not consulted on the released figures,” Dr. Karl Hamner, the University of Alabama principal investigator on the study, told me. “We did not make any conclusions and we don’t endorse the reported findings about national rates or numbers per day. Nor did we make any statements about the VA’s data.”

As it happens, the VA’s 2022 National Veteran Suicide Prevention Annual Report was issued the same week as the OpDD report. VA found that veteran suicides decreased by 9.7% over the last 2 years, nearly twice the decrease for nonveterans. Yet, in a contemporaneous hearing of the House Committee on Veterans’ Affairs, AWP’s President and CEO Jim Lorraine testified that the progress preventing veteran suicide was “a disgrace” and “a failure.” He misattributed that it was VA (not AWP) that “must be more open and transparent about their data.”

Unsupported denigration of the VA tarnishes its reputation, undermining veterans’ trust in the health care system and increasing barriers to seeking needed services. More broadly, it fortifies those forces who wish to redirect allocations away from VA and towards non-VA veterans’ entities like AWP. The media and other stakeholders must take a lesson about getting the story straight before reflexively amplifying false accusations about the VA. Veterans deserve better.

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Asking about gun ownership: A loaded question?

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Recently there have been articles and discussions about how involved physicians should be in patient gun ownership.

There are valid points all around. Some of my colleagues, especially those in general practice, feel that they don’t have enough time to add more screening questions on top of those they already have. Others point out that routinely asking about gun ownership is none of our business. A third view I’ve seen is that very few doctors are in a position to teach issues of gun safety.

Dr. Allan M. Block, a neurologist in Scottsdale, Arizona.
Dr. Allan M. Block

In my field, with certain patients, I do ask. Namely, the demented.

Anyone with concerning cognitive deficits shouldn’t have access to guns. As their judgment fades and their impulsivity worsens, they often don’t realize right from wrong. They might open fire on family members thinking they’re burglars. Some of them see suspicious people out in the yard that are more likely hallucinations or simply passersby.

In more advanced cases of dementia, patients may not even realize what they’re holding, but that doesn’t make it any less dangerous. Probably more so, since they’re not going to be careful with it.

Another scary issue I sometimes encounter is when patients with dementia find a gun at home – usually one that belonged to a deceased spouse and that family isn’t aware of. No one really knows if it’s working, or loaded, though we have to assume it is. They find it and start carrying it out on walks, pointing it at the mailman who they think is trespassing, etc. Sometimes the police get called. These situations are extremely dangerous for all involved.

It’s pretty easy for someone to get shot under these circumstances. It’s like leaving a gun out and having a toddler find it. They don’t mean any harm, but they’re still just as deadly as someone who does.

These people also have access to knives, which can be equally deadly, but knives aren’t guns. They don’t have the range or hitting power that make firearms so dangerous. It’s a lot easier to disarm an elderly patient with a steak knife if need be.

So, like my colleagues in psychiatry, I ask about guns in certain situations that involve dementia. Are there any guns? If so, are they locked up safely where the person can’t access them?

I’m not making a statement for or against gun ownership here. But I think all of us would agree that someone with impaired judgment, cognition, self-control, reasoning, and memory shouldn’t have access to guns.

In neurology, that’s a decent chunk of my patients. So for everyone’s safety, I ask them (and, more importantly, their families) about guns.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.

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Recently there have been articles and discussions about how involved physicians should be in patient gun ownership.

There are valid points all around. Some of my colleagues, especially those in general practice, feel that they don’t have enough time to add more screening questions on top of those they already have. Others point out that routinely asking about gun ownership is none of our business. A third view I’ve seen is that very few doctors are in a position to teach issues of gun safety.

Dr. Allan M. Block, a neurologist in Scottsdale, Arizona.
Dr. Allan M. Block

In my field, with certain patients, I do ask. Namely, the demented.

Anyone with concerning cognitive deficits shouldn’t have access to guns. As their judgment fades and their impulsivity worsens, they often don’t realize right from wrong. They might open fire on family members thinking they’re burglars. Some of them see suspicious people out in the yard that are more likely hallucinations or simply passersby.

In more advanced cases of dementia, patients may not even realize what they’re holding, but that doesn’t make it any less dangerous. Probably more so, since they’re not going to be careful with it.

Another scary issue I sometimes encounter is when patients with dementia find a gun at home – usually one that belonged to a deceased spouse and that family isn’t aware of. No one really knows if it’s working, or loaded, though we have to assume it is. They find it and start carrying it out on walks, pointing it at the mailman who they think is trespassing, etc. Sometimes the police get called. These situations are extremely dangerous for all involved.

It’s pretty easy for someone to get shot under these circumstances. It’s like leaving a gun out and having a toddler find it. They don’t mean any harm, but they’re still just as deadly as someone who does.

These people also have access to knives, which can be equally deadly, but knives aren’t guns. They don’t have the range or hitting power that make firearms so dangerous. It’s a lot easier to disarm an elderly patient with a steak knife if need be.

So, like my colleagues in psychiatry, I ask about guns in certain situations that involve dementia. Are there any guns? If so, are they locked up safely where the person can’t access them?

I’m not making a statement for or against gun ownership here. But I think all of us would agree that someone with impaired judgment, cognition, self-control, reasoning, and memory shouldn’t have access to guns.

In neurology, that’s a decent chunk of my patients. So for everyone’s safety, I ask them (and, more importantly, their families) about guns.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.

Recently there have been articles and discussions about how involved physicians should be in patient gun ownership.

There are valid points all around. Some of my colleagues, especially those in general practice, feel that they don’t have enough time to add more screening questions on top of those they already have. Others point out that routinely asking about gun ownership is none of our business. A third view I’ve seen is that very few doctors are in a position to teach issues of gun safety.

Dr. Allan M. Block, a neurologist in Scottsdale, Arizona.
Dr. Allan M. Block

In my field, with certain patients, I do ask. Namely, the demented.

Anyone with concerning cognitive deficits shouldn’t have access to guns. As their judgment fades and their impulsivity worsens, they often don’t realize right from wrong. They might open fire on family members thinking they’re burglars. Some of them see suspicious people out in the yard that are more likely hallucinations or simply passersby.

In more advanced cases of dementia, patients may not even realize what they’re holding, but that doesn’t make it any less dangerous. Probably more so, since they’re not going to be careful with it.

Another scary issue I sometimes encounter is when patients with dementia find a gun at home – usually one that belonged to a deceased spouse and that family isn’t aware of. No one really knows if it’s working, or loaded, though we have to assume it is. They find it and start carrying it out on walks, pointing it at the mailman who they think is trespassing, etc. Sometimes the police get called. These situations are extremely dangerous for all involved.

It’s pretty easy for someone to get shot under these circumstances. It’s like leaving a gun out and having a toddler find it. They don’t mean any harm, but they’re still just as deadly as someone who does.

These people also have access to knives, which can be equally deadly, but knives aren’t guns. They don’t have the range or hitting power that make firearms so dangerous. It’s a lot easier to disarm an elderly patient with a steak knife if need be.

So, like my colleagues in psychiatry, I ask about guns in certain situations that involve dementia. Are there any guns? If so, are they locked up safely where the person can’t access them?

I’m not making a statement for or against gun ownership here. But I think all of us would agree that someone with impaired judgment, cognition, self-control, reasoning, and memory shouldn’t have access to guns.

In neurology, that’s a decent chunk of my patients. So for everyone’s safety, I ask them (and, more importantly, their families) about guns.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.

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Doctors favor euphemisms and jargon in discussions of death

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Changed
Wed, 10/26/2022 - 13:26

Words including death, die, dying, or stillborn were frequently replaced by euphemisms in meetings between clinicians and families of critically ill children, based on data from 33 family meetings that involved discussions of death.

Clear communication is essential in discussing death with patients and families and current consensus guidelines recommend against use of euphemisms; data also suggest that patients and families prefer clear and direct language, wrote Margaret H. Barlet, of Duke University, Durham, N.C., and colleagues.

However, data on the language used in discussions of death in neonatal or pediatric contexts are limited, they said.

In a study published in JAMA Network Open, the researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalized in a pediatric ICU in a single center in the southeastern United States between September 2018 and September 2020. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and deidentified. The median age of the parents was 28.5 years; 60% identified as Black, 40% as White, and 10% as Asian; with some selecting more than one race.

For all 13 infants, one parent identified as the infant’s mother, and another parent identified as the father for seven of the infants. The median gestational age of the infants was 37 weeks; 54% were female, and the median hospital stay was 86 days.

Twelve infants (92%) required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by clinicians and 131 times by family members).

Families were more likely than were clinicians to use the words die, death, dying, or stillborn; these terms appeared in 19 of 131 references by families and 13 of 275 references by clinicians (15% vs. 5%).

In addition to a category for use of words such as die, death, dying, or stillborn, the researchers identified four types of euphemisms used in place of these terms. They characterized the types of euphemisms as survival framing (for example, not live), colloquialisms (for example, pass away), medical jargon or use of physiologic terms (for example, code event or irrecoverable heart rate drop) and the use of pronouns without an antecedent (for example, it might happen soon).

Overall, 92% of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references, 43%), while colloquialism was the most common type used by family members (44 of 131 references, 34%).

The results are consistent with limited research on this topic and show the high rates of euphemistic language used in discussions of death, the researchers wrote in their discussion. “Although our work did not directly evaluate the comparative clarity of different ways to reference death, our results raise questions about what language is most clear,” they said. The researchers proposed that their classification of euphemistic language may provide a framework for the use of language in discussions of death and may prompt clinicians to notice the language they use and hear from patients and families. “Empirically evaluating the perceived clarity of euphemism types and their effects on shared decision-making should be a priority for future study and should be used to inform interventions for improving communication in this context,” they said.

The findings were limited by several factors including the use of data from a single institution and the exclusion of non-English speaking families, the researchers noted. In addition, the researchers studied only what was said, therefore “questions about speaker motivation, listener understanding, and the effects of language choice on decision-making remain unanswered,” they added.

However, the results reflect the frequent use of euphemisms by both clinicians and families, and more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.
 

 

 

Euphemisms can create confusion but may increase empathy

“Ms. Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients,” Michael B. Pitt, MD, of the University of Minnesota, Minneapolis, and colleagues wrote in an accompanying editorial. Using a euphemism such as “pass on” instead of “die” may be an intentional choice by physicians to use less harsh language but it may still cause confusion, they noted.

The study showed how frequently physicians use euphemisms to talk about death but was distinctive in the inclusion of data on language use by families as well, they said.

“This pattern of use identified among the infants’ families may indicate that despite the clinical recommendation that end-of-life discussions avoid the use of euphemisms, it may be worth noting and responding to families’ language preferences accordingly once it is clear they have expressed understanding that the clinician is speaking of death,” they said. For example, if a family is consistently using softer terminology, clinicians should consider responding with similar terms, rather than using medical jargon or the words death or dying, they wrote.

“As the authors note, family preferences for this type of discussion are an important target for future research aimed at optimizing family-centered communication,” the editorialists added.
 

Families seek clarity in communication

“Clinicians have an important role in helping parents of seriously ill children understand their child’s health condition and make value-driven decisions about care,” Jennifer W. Mack, MD, of Harvard Medical School and the Dana-Farber Cancer Institute, Boston, said in an interview. “The words that clinicians use can have a significant impact on the knowledge parents take away from encounters and the decisions they make. While there is evidence of euphemistic language in the adult setting, there is limited information about this in children,” said Dr. Mack, a pediatric hematologist/oncologist who was not involved in the study.

Dr. Mack said she was not entirely surprised that in the current study, clinician language often includes medical jargon and an avoidance of direct language about death. “This is consistent with what I have seen in clinical practice,” she said. “One striking aspect of the study is that parents used terms like death or die more often than clinicians, and they sometimes used these terms as a way to clarify what the clinician was saying. This suggests to me that parents often want clarity, even if the information is very difficult,” she said.

The key message of the study is that clinicians should pay attention to the words they use to talk about the possibility of death and recognize the tendency of many clinicians to fall back on medical jargon, said Dr. Mack.

“My personal belief is that it is possible to be both clear and compassionate, and clinicians should strive for both in these conversations, to support families and help them make their best decisions for their children,” she said. “We need to remember a single communication strategy or choice of words is not likely to feel supportive to every family; what is helpful for one family may feel painful to another,” she emphasized. “Being willing to listen to the needs they express and their own language choice can help us to be responsive to individual needs,” she added.

An important next step for research is to learn more about what families experience as supportive during conversations with clinicians about death and dying, Dr. Mack said.

The study was supported by the National Institute of Neurological Disorders and Stroke, National Institutes of Health, and the Doris Duke Charitable Foundation. The researchers, editorial authors, and Dr. Mack had no financial conflicts to disclose.

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Words including death, die, dying, or stillborn were frequently replaced by euphemisms in meetings between clinicians and families of critically ill children, based on data from 33 family meetings that involved discussions of death.

Clear communication is essential in discussing death with patients and families and current consensus guidelines recommend against use of euphemisms; data also suggest that patients and families prefer clear and direct language, wrote Margaret H. Barlet, of Duke University, Durham, N.C., and colleagues.

However, data on the language used in discussions of death in neonatal or pediatric contexts are limited, they said.

In a study published in JAMA Network Open, the researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalized in a pediatric ICU in a single center in the southeastern United States between September 2018 and September 2020. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and deidentified. The median age of the parents was 28.5 years; 60% identified as Black, 40% as White, and 10% as Asian; with some selecting more than one race.

For all 13 infants, one parent identified as the infant’s mother, and another parent identified as the father for seven of the infants. The median gestational age of the infants was 37 weeks; 54% were female, and the median hospital stay was 86 days.

Twelve infants (92%) required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by clinicians and 131 times by family members).

Families were more likely than were clinicians to use the words die, death, dying, or stillborn; these terms appeared in 19 of 131 references by families and 13 of 275 references by clinicians (15% vs. 5%).

In addition to a category for use of words such as die, death, dying, or stillborn, the researchers identified four types of euphemisms used in place of these terms. They characterized the types of euphemisms as survival framing (for example, not live), colloquialisms (for example, pass away), medical jargon or use of physiologic terms (for example, code event or irrecoverable heart rate drop) and the use of pronouns without an antecedent (for example, it might happen soon).

Overall, 92% of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references, 43%), while colloquialism was the most common type used by family members (44 of 131 references, 34%).

The results are consistent with limited research on this topic and show the high rates of euphemistic language used in discussions of death, the researchers wrote in their discussion. “Although our work did not directly evaluate the comparative clarity of different ways to reference death, our results raise questions about what language is most clear,” they said. The researchers proposed that their classification of euphemistic language may provide a framework for the use of language in discussions of death and may prompt clinicians to notice the language they use and hear from patients and families. “Empirically evaluating the perceived clarity of euphemism types and their effects on shared decision-making should be a priority for future study and should be used to inform interventions for improving communication in this context,” they said.

The findings were limited by several factors including the use of data from a single institution and the exclusion of non-English speaking families, the researchers noted. In addition, the researchers studied only what was said, therefore “questions about speaker motivation, listener understanding, and the effects of language choice on decision-making remain unanswered,” they added.

However, the results reflect the frequent use of euphemisms by both clinicians and families, and more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.
 

 

 

Euphemisms can create confusion but may increase empathy

“Ms. Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients,” Michael B. Pitt, MD, of the University of Minnesota, Minneapolis, and colleagues wrote in an accompanying editorial. Using a euphemism such as “pass on” instead of “die” may be an intentional choice by physicians to use less harsh language but it may still cause confusion, they noted.

The study showed how frequently physicians use euphemisms to talk about death but was distinctive in the inclusion of data on language use by families as well, they said.

“This pattern of use identified among the infants’ families may indicate that despite the clinical recommendation that end-of-life discussions avoid the use of euphemisms, it may be worth noting and responding to families’ language preferences accordingly once it is clear they have expressed understanding that the clinician is speaking of death,” they said. For example, if a family is consistently using softer terminology, clinicians should consider responding with similar terms, rather than using medical jargon or the words death or dying, they wrote.

“As the authors note, family preferences for this type of discussion are an important target for future research aimed at optimizing family-centered communication,” the editorialists added.
 

Families seek clarity in communication

“Clinicians have an important role in helping parents of seriously ill children understand their child’s health condition and make value-driven decisions about care,” Jennifer W. Mack, MD, of Harvard Medical School and the Dana-Farber Cancer Institute, Boston, said in an interview. “The words that clinicians use can have a significant impact on the knowledge parents take away from encounters and the decisions they make. While there is evidence of euphemistic language in the adult setting, there is limited information about this in children,” said Dr. Mack, a pediatric hematologist/oncologist who was not involved in the study.

Dr. Mack said she was not entirely surprised that in the current study, clinician language often includes medical jargon and an avoidance of direct language about death. “This is consistent with what I have seen in clinical practice,” she said. “One striking aspect of the study is that parents used terms like death or die more often than clinicians, and they sometimes used these terms as a way to clarify what the clinician was saying. This suggests to me that parents often want clarity, even if the information is very difficult,” she said.

The key message of the study is that clinicians should pay attention to the words they use to talk about the possibility of death and recognize the tendency of many clinicians to fall back on medical jargon, said Dr. Mack.

“My personal belief is that it is possible to be both clear and compassionate, and clinicians should strive for both in these conversations, to support families and help them make their best decisions for their children,” she said. “We need to remember a single communication strategy or choice of words is not likely to feel supportive to every family; what is helpful for one family may feel painful to another,” she emphasized. “Being willing to listen to the needs they express and their own language choice can help us to be responsive to individual needs,” she added.

An important next step for research is to learn more about what families experience as supportive during conversations with clinicians about death and dying, Dr. Mack said.

The study was supported by the National Institute of Neurological Disorders and Stroke, National Institutes of Health, and the Doris Duke Charitable Foundation. The researchers, editorial authors, and Dr. Mack had no financial conflicts to disclose.

Words including death, die, dying, or stillborn were frequently replaced by euphemisms in meetings between clinicians and families of critically ill children, based on data from 33 family meetings that involved discussions of death.

Clear communication is essential in discussing death with patients and families and current consensus guidelines recommend against use of euphemisms; data also suggest that patients and families prefer clear and direct language, wrote Margaret H. Barlet, of Duke University, Durham, N.C., and colleagues.

However, data on the language used in discussions of death in neonatal or pediatric contexts are limited, they said.

In a study published in JAMA Network Open, the researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalized in a pediatric ICU in a single center in the southeastern United States between September 2018 and September 2020. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and deidentified. The median age of the parents was 28.5 years; 60% identified as Black, 40% as White, and 10% as Asian; with some selecting more than one race.

For all 13 infants, one parent identified as the infant’s mother, and another parent identified as the father for seven of the infants. The median gestational age of the infants was 37 weeks; 54% were female, and the median hospital stay was 86 days.

Twelve infants (92%) required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by clinicians and 131 times by family members).

Families were more likely than were clinicians to use the words die, death, dying, or stillborn; these terms appeared in 19 of 131 references by families and 13 of 275 references by clinicians (15% vs. 5%).

In addition to a category for use of words such as die, death, dying, or stillborn, the researchers identified four types of euphemisms used in place of these terms. They characterized the types of euphemisms as survival framing (for example, not live), colloquialisms (for example, pass away), medical jargon or use of physiologic terms (for example, code event or irrecoverable heart rate drop) and the use of pronouns without an antecedent (for example, it might happen soon).

Overall, 92% of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references, 43%), while colloquialism was the most common type used by family members (44 of 131 references, 34%).

The results are consistent with limited research on this topic and show the high rates of euphemistic language used in discussions of death, the researchers wrote in their discussion. “Although our work did not directly evaluate the comparative clarity of different ways to reference death, our results raise questions about what language is most clear,” they said. The researchers proposed that their classification of euphemistic language may provide a framework for the use of language in discussions of death and may prompt clinicians to notice the language they use and hear from patients and families. “Empirically evaluating the perceived clarity of euphemism types and their effects on shared decision-making should be a priority for future study and should be used to inform interventions for improving communication in this context,” they said.

The findings were limited by several factors including the use of data from a single institution and the exclusion of non-English speaking families, the researchers noted. In addition, the researchers studied only what was said, therefore “questions about speaker motivation, listener understanding, and the effects of language choice on decision-making remain unanswered,” they added.

However, the results reflect the frequent use of euphemisms by both clinicians and families, and more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.
 

 

 

Euphemisms can create confusion but may increase empathy

“Ms. Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients,” Michael B. Pitt, MD, of the University of Minnesota, Minneapolis, and colleagues wrote in an accompanying editorial. Using a euphemism such as “pass on” instead of “die” may be an intentional choice by physicians to use less harsh language but it may still cause confusion, they noted.

The study showed how frequently physicians use euphemisms to talk about death but was distinctive in the inclusion of data on language use by families as well, they said.

“This pattern of use identified among the infants’ families may indicate that despite the clinical recommendation that end-of-life discussions avoid the use of euphemisms, it may be worth noting and responding to families’ language preferences accordingly once it is clear they have expressed understanding that the clinician is speaking of death,” they said. For example, if a family is consistently using softer terminology, clinicians should consider responding with similar terms, rather than using medical jargon or the words death or dying, they wrote.

“As the authors note, family preferences for this type of discussion are an important target for future research aimed at optimizing family-centered communication,” the editorialists added.
 

Families seek clarity in communication

“Clinicians have an important role in helping parents of seriously ill children understand their child’s health condition and make value-driven decisions about care,” Jennifer W. Mack, MD, of Harvard Medical School and the Dana-Farber Cancer Institute, Boston, said in an interview. “The words that clinicians use can have a significant impact on the knowledge parents take away from encounters and the decisions they make. While there is evidence of euphemistic language in the adult setting, there is limited information about this in children,” said Dr. Mack, a pediatric hematologist/oncologist who was not involved in the study.

Dr. Mack said she was not entirely surprised that in the current study, clinician language often includes medical jargon and an avoidance of direct language about death. “This is consistent with what I have seen in clinical practice,” she said. “One striking aspect of the study is that parents used terms like death or die more often than clinicians, and they sometimes used these terms as a way to clarify what the clinician was saying. This suggests to me that parents often want clarity, even if the information is very difficult,” she said.

The key message of the study is that clinicians should pay attention to the words they use to talk about the possibility of death and recognize the tendency of many clinicians to fall back on medical jargon, said Dr. Mack.

“My personal belief is that it is possible to be both clear and compassionate, and clinicians should strive for both in these conversations, to support families and help them make their best decisions for their children,” she said. “We need to remember a single communication strategy or choice of words is not likely to feel supportive to every family; what is helpful for one family may feel painful to another,” she emphasized. “Being willing to listen to the needs they express and their own language choice can help us to be responsive to individual needs,” she added.

An important next step for research is to learn more about what families experience as supportive during conversations with clinicians about death and dying, Dr. Mack said.

The study was supported by the National Institute of Neurological Disorders and Stroke, National Institutes of Health, and the Doris Duke Charitable Foundation. The researchers, editorial authors, and Dr. Mack had no financial conflicts to disclose.

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Psychiatric comorbidities in the pediatric neurology clinic

Article Type
Changed
Tue, 11/22/2022 - 11:08

– Neurology and psychiatry have an inherent kinship, as one often deals with the brain and the other always focuses on the mind. The two fields can be intertwined, since neurological conditions are often associated with psychiatric comorbidities amid complex relationships: For example, a young patient with a neurological disorder may experience anxiety due to life changes, his or her diagnosis, or altered biological pathways from the condition or medications used to treat it.

As a result, psychiatric comorbidities are often seen among pediatric patients with neurological conditions, and pediatric neurologists can play an important role in diagnosis and management of such disorders, according to Devin McNulty, PhD, who spoke on the topic at the 2022 annual meeting of the Child Neurology Society.
 

The ‘second pandemic’

Mental health conditions represent about 16% of the global burden of disease among people aged 10-19, and the COVID-19 pandemic has drastically worsened the problem, as shutdowns, school loss, and economic struggles have added to the burden. “I think we’ve really seen mental health as sort of the second pandemic. We’ve seen this in Chicago in our emergency room, and in outpatient clinics wait-lists are really high. I think adolescents are specifically at risk,” said Dr. McNulty during her talk. She is an assistant professor of psychiatry and behavioral sciences at Northwestern University and a child psychiatrist at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Common diagnoses include major depressive order, social anxiety disorder, generalized anxiety disorder, post-traumatic stress disorder, obsessive-compulsive disorder, somatic symptom disorder, and functional neurological symptom disorder. The last can appear as neurological symptoms that are not consistent with neurological medical conditions, such as attacks or seizures, abnormal movements, sensory loss or gain, weakness or paralysis, or speech and swallowing issues. It is the second most commonly diagnosed disorder in neurology clinics and accounts for 10% of neurology hospitalizations, and it leads to high rates of health care utilization and functional impairment.

Overall, children with neurological conditions are at about a 5-fold increased risk for depression and anxiety disorders, with a range of contributing risk factors. These include biological factors like medication use, neurological dysfunction, and genetic vulnerability. Psychological factors include stressors, the child’s reaction to the diagnosis and illness, and the level of his or her coping skills. Psychiatric comorbidities may also be triggered by social factors such as familial stress, peer rejection and social isolation, and barriers to treatment for the neurological condition. As just one example, overprotective parenting behavior, while adaptive in moderation, can create a sort of feedback loop that can lead to separation anxiety.
 

A unique opportunity

“There’s an overlap,” Dr. McNulty said, “because the origin is often multifactorial.” A young patient has a medical condition, which can be chronic or disabling, and the age of onset and diagnosis comes during a critical developmental period. “Then we have issues such as the impact of treatments, whether that’s medication side effects or medical visits. And then disease-related environmental changes, such as family factors, social changes, and impact on school,” said Dr. McNulty.

Child neurologists are in a unique position to identify and ensure treatment of these psychiatric comorbidities, according to Dr. McNulty. “Child neurologists will see psychiatric symptoms in their patient population, and pediatric providers have a unique capacity and ability to treat these patients, especially when you’re seeing patients on a frequent basis. You get to know these patients and their families really well,” she said.

She specifically pointed to three areas: psychosocial screening, differential diagnosis, and treatment and management.

There are broad-based screening measures that can be useful, such as the Strengths and Difficulties Questionnaire and the Pediatric Symptom Checklist. Disorder-specific screening tools include the PHQ-9 (depression), GAD7 (anxiety), Vanderbilt (ADHD), and PROMIS measures for anxiety and depression. “The idea behind the screening measure is that all patients would fill this out and then if a patient screens positive, they would benefit from a more thorough evaluation and history,” said Dr. McNulty.

However, she noted that screening shouldn’t necessarily be a one-off effort. Research has shown that sequential screening is the most powerful strategy. “Then you can get a baseline of a patient’s emotional and behavioral functioning, and it’s actually the changes in some of these screening measures that might give them most clinical information,” said Dr. McNulty.

In fact, on October 11, 2022, the U.S. Preventive Services Task Force announced a recommendation that all children starting at age 8 should be screened for anxiety disorders. It is already recommended to screen children aged 12 and over for depressive disorders, although these documents are aimed primarily at pediatricians or primary care clinics. The American Academy of Neurology has also recommended routine screening of psychiatric and behavioral disorders among children with epilepsy.
 

A unique perspective

Once a disorder is identified, neurologists can bring a unique perspective to treatment. The neurologist can use his or her knowledge of the disease state to assess whether symptoms are due to poor adjustment to the neurological condition, a primary psychiatric disorder, or the biological underpinnings of the illness or prescribed medications. “I think their neurologist can sort of help tease that apart, [using] their knowledge of neurologic disorders and pathways and medications in a way that psychologists might not be able to do on their own,” said Dr. McNulty.

She also emphasized that there are effective treatments for psychiatric disorders, including cognitive behavioral therapy and various pharmacotherapy options. Other approaches for treating comorbid neurological and psychiatric disorders may include building adaptive coping skills, psychoeducation, and incorporating changes to the family or school environment.

During the Q&A period, one person commented that there should be more psychiatric training for neurology residents. “We do work with the same brain, so I completely agree with that,” said Dr. McNulty.

She was also asked how to identify psychiatric symptoms in nonverbal patients. “One thing that I pay close attention to when I ask parents about (their child) is changes in their physical (attributes). Oftentimes in anxiety in folks who are not severely impaired, if we’re feeling anxious we might be breathing a little faster, or we might get a little sweaty. So looking for physical manifestations is one thing. And then sometimes I’ll tell the parents, if we’re not quite sure, I’ll say ‘I’m not sure, but this is very common given the disorder that you have. Can we check?’ I’m always very clear that I may not be nailing it, but then when we go after it with targeted treatment and we see it getting better, we can say ‘Aha!’ ”

Dr. McNulty has no relevant financial disclosures.
 

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– Neurology and psychiatry have an inherent kinship, as one often deals with the brain and the other always focuses on the mind. The two fields can be intertwined, since neurological conditions are often associated with psychiatric comorbidities amid complex relationships: For example, a young patient with a neurological disorder may experience anxiety due to life changes, his or her diagnosis, or altered biological pathways from the condition or medications used to treat it.

As a result, psychiatric comorbidities are often seen among pediatric patients with neurological conditions, and pediatric neurologists can play an important role in diagnosis and management of such disorders, according to Devin McNulty, PhD, who spoke on the topic at the 2022 annual meeting of the Child Neurology Society.
 

The ‘second pandemic’

Mental health conditions represent about 16% of the global burden of disease among people aged 10-19, and the COVID-19 pandemic has drastically worsened the problem, as shutdowns, school loss, and economic struggles have added to the burden. “I think we’ve really seen mental health as sort of the second pandemic. We’ve seen this in Chicago in our emergency room, and in outpatient clinics wait-lists are really high. I think adolescents are specifically at risk,” said Dr. McNulty during her talk. She is an assistant professor of psychiatry and behavioral sciences at Northwestern University and a child psychiatrist at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Common diagnoses include major depressive order, social anxiety disorder, generalized anxiety disorder, post-traumatic stress disorder, obsessive-compulsive disorder, somatic symptom disorder, and functional neurological symptom disorder. The last can appear as neurological symptoms that are not consistent with neurological medical conditions, such as attacks or seizures, abnormal movements, sensory loss or gain, weakness or paralysis, or speech and swallowing issues. It is the second most commonly diagnosed disorder in neurology clinics and accounts for 10% of neurology hospitalizations, and it leads to high rates of health care utilization and functional impairment.

Overall, children with neurological conditions are at about a 5-fold increased risk for depression and anxiety disorders, with a range of contributing risk factors. These include biological factors like medication use, neurological dysfunction, and genetic vulnerability. Psychological factors include stressors, the child’s reaction to the diagnosis and illness, and the level of his or her coping skills. Psychiatric comorbidities may also be triggered by social factors such as familial stress, peer rejection and social isolation, and barriers to treatment for the neurological condition. As just one example, overprotective parenting behavior, while adaptive in moderation, can create a sort of feedback loop that can lead to separation anxiety.
 

A unique opportunity

“There’s an overlap,” Dr. McNulty said, “because the origin is often multifactorial.” A young patient has a medical condition, which can be chronic or disabling, and the age of onset and diagnosis comes during a critical developmental period. “Then we have issues such as the impact of treatments, whether that’s medication side effects or medical visits. And then disease-related environmental changes, such as family factors, social changes, and impact on school,” said Dr. McNulty.

Child neurologists are in a unique position to identify and ensure treatment of these psychiatric comorbidities, according to Dr. McNulty. “Child neurologists will see psychiatric symptoms in their patient population, and pediatric providers have a unique capacity and ability to treat these patients, especially when you’re seeing patients on a frequent basis. You get to know these patients and their families really well,” she said.

She specifically pointed to three areas: psychosocial screening, differential diagnosis, and treatment and management.

There are broad-based screening measures that can be useful, such as the Strengths and Difficulties Questionnaire and the Pediatric Symptom Checklist. Disorder-specific screening tools include the PHQ-9 (depression), GAD7 (anxiety), Vanderbilt (ADHD), and PROMIS measures for anxiety and depression. “The idea behind the screening measure is that all patients would fill this out and then if a patient screens positive, they would benefit from a more thorough evaluation and history,” said Dr. McNulty.

However, she noted that screening shouldn’t necessarily be a one-off effort. Research has shown that sequential screening is the most powerful strategy. “Then you can get a baseline of a patient’s emotional and behavioral functioning, and it’s actually the changes in some of these screening measures that might give them most clinical information,” said Dr. McNulty.

In fact, on October 11, 2022, the U.S. Preventive Services Task Force announced a recommendation that all children starting at age 8 should be screened for anxiety disorders. It is already recommended to screen children aged 12 and over for depressive disorders, although these documents are aimed primarily at pediatricians or primary care clinics. The American Academy of Neurology has also recommended routine screening of psychiatric and behavioral disorders among children with epilepsy.
 

A unique perspective

Once a disorder is identified, neurologists can bring a unique perspective to treatment. The neurologist can use his or her knowledge of the disease state to assess whether symptoms are due to poor adjustment to the neurological condition, a primary psychiatric disorder, or the biological underpinnings of the illness or prescribed medications. “I think their neurologist can sort of help tease that apart, [using] their knowledge of neurologic disorders and pathways and medications in a way that psychologists might not be able to do on their own,” said Dr. McNulty.

She also emphasized that there are effective treatments for psychiatric disorders, including cognitive behavioral therapy and various pharmacotherapy options. Other approaches for treating comorbid neurological and psychiatric disorders may include building adaptive coping skills, psychoeducation, and incorporating changes to the family or school environment.

During the Q&A period, one person commented that there should be more psychiatric training for neurology residents. “We do work with the same brain, so I completely agree with that,” said Dr. McNulty.

She was also asked how to identify psychiatric symptoms in nonverbal patients. “One thing that I pay close attention to when I ask parents about (their child) is changes in their physical (attributes). Oftentimes in anxiety in folks who are not severely impaired, if we’re feeling anxious we might be breathing a little faster, or we might get a little sweaty. So looking for physical manifestations is one thing. And then sometimes I’ll tell the parents, if we’re not quite sure, I’ll say ‘I’m not sure, but this is very common given the disorder that you have. Can we check?’ I’m always very clear that I may not be nailing it, but then when we go after it with targeted treatment and we see it getting better, we can say ‘Aha!’ ”

Dr. McNulty has no relevant financial disclosures.
 

– Neurology and psychiatry have an inherent kinship, as one often deals with the brain and the other always focuses on the mind. The two fields can be intertwined, since neurological conditions are often associated with psychiatric comorbidities amid complex relationships: For example, a young patient with a neurological disorder may experience anxiety due to life changes, his or her diagnosis, or altered biological pathways from the condition or medications used to treat it.

As a result, psychiatric comorbidities are often seen among pediatric patients with neurological conditions, and pediatric neurologists can play an important role in diagnosis and management of such disorders, according to Devin McNulty, PhD, who spoke on the topic at the 2022 annual meeting of the Child Neurology Society.
 

The ‘second pandemic’

Mental health conditions represent about 16% of the global burden of disease among people aged 10-19, and the COVID-19 pandemic has drastically worsened the problem, as shutdowns, school loss, and economic struggles have added to the burden. “I think we’ve really seen mental health as sort of the second pandemic. We’ve seen this in Chicago in our emergency room, and in outpatient clinics wait-lists are really high. I think adolescents are specifically at risk,” said Dr. McNulty during her talk. She is an assistant professor of psychiatry and behavioral sciences at Northwestern University and a child psychiatrist at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Common diagnoses include major depressive order, social anxiety disorder, generalized anxiety disorder, post-traumatic stress disorder, obsessive-compulsive disorder, somatic symptom disorder, and functional neurological symptom disorder. The last can appear as neurological symptoms that are not consistent with neurological medical conditions, such as attacks or seizures, abnormal movements, sensory loss or gain, weakness or paralysis, or speech and swallowing issues. It is the second most commonly diagnosed disorder in neurology clinics and accounts for 10% of neurology hospitalizations, and it leads to high rates of health care utilization and functional impairment.

Overall, children with neurological conditions are at about a 5-fold increased risk for depression and anxiety disorders, with a range of contributing risk factors. These include biological factors like medication use, neurological dysfunction, and genetic vulnerability. Psychological factors include stressors, the child’s reaction to the diagnosis and illness, and the level of his or her coping skills. Psychiatric comorbidities may also be triggered by social factors such as familial stress, peer rejection and social isolation, and barriers to treatment for the neurological condition. As just one example, overprotective parenting behavior, while adaptive in moderation, can create a sort of feedback loop that can lead to separation anxiety.
 

A unique opportunity

“There’s an overlap,” Dr. McNulty said, “because the origin is often multifactorial.” A young patient has a medical condition, which can be chronic or disabling, and the age of onset and diagnosis comes during a critical developmental period. “Then we have issues such as the impact of treatments, whether that’s medication side effects or medical visits. And then disease-related environmental changes, such as family factors, social changes, and impact on school,” said Dr. McNulty.

Child neurologists are in a unique position to identify and ensure treatment of these psychiatric comorbidities, according to Dr. McNulty. “Child neurologists will see psychiatric symptoms in their patient population, and pediatric providers have a unique capacity and ability to treat these patients, especially when you’re seeing patients on a frequent basis. You get to know these patients and their families really well,” she said.

She specifically pointed to three areas: psychosocial screening, differential diagnosis, and treatment and management.

There are broad-based screening measures that can be useful, such as the Strengths and Difficulties Questionnaire and the Pediatric Symptom Checklist. Disorder-specific screening tools include the PHQ-9 (depression), GAD7 (anxiety), Vanderbilt (ADHD), and PROMIS measures for anxiety and depression. “The idea behind the screening measure is that all patients would fill this out and then if a patient screens positive, they would benefit from a more thorough evaluation and history,” said Dr. McNulty.

However, she noted that screening shouldn’t necessarily be a one-off effort. Research has shown that sequential screening is the most powerful strategy. “Then you can get a baseline of a patient’s emotional and behavioral functioning, and it’s actually the changes in some of these screening measures that might give them most clinical information,” said Dr. McNulty.

In fact, on October 11, 2022, the U.S. Preventive Services Task Force announced a recommendation that all children starting at age 8 should be screened for anxiety disorders. It is already recommended to screen children aged 12 and over for depressive disorders, although these documents are aimed primarily at pediatricians or primary care clinics. The American Academy of Neurology has also recommended routine screening of psychiatric and behavioral disorders among children with epilepsy.
 

A unique perspective

Once a disorder is identified, neurologists can bring a unique perspective to treatment. The neurologist can use his or her knowledge of the disease state to assess whether symptoms are due to poor adjustment to the neurological condition, a primary psychiatric disorder, or the biological underpinnings of the illness or prescribed medications. “I think their neurologist can sort of help tease that apart, [using] their knowledge of neurologic disorders and pathways and medications in a way that psychologists might not be able to do on their own,” said Dr. McNulty.

She also emphasized that there are effective treatments for psychiatric disorders, including cognitive behavioral therapy and various pharmacotherapy options. Other approaches for treating comorbid neurological and psychiatric disorders may include building adaptive coping skills, psychoeducation, and incorporating changes to the family or school environment.

During the Q&A period, one person commented that there should be more psychiatric training for neurology residents. “We do work with the same brain, so I completely agree with that,” said Dr. McNulty.

She was also asked how to identify psychiatric symptoms in nonverbal patients. “One thing that I pay close attention to when I ask parents about (their child) is changes in their physical (attributes). Oftentimes in anxiety in folks who are not severely impaired, if we’re feeling anxious we might be breathing a little faster, or we might get a little sweaty. So looking for physical manifestations is one thing. And then sometimes I’ll tell the parents, if we’re not quite sure, I’ll say ‘I’m not sure, but this is very common given the disorder that you have. Can we check?’ I’m always very clear that I may not be nailing it, but then when we go after it with targeted treatment and we see it getting better, we can say ‘Aha!’ ”

Dr. McNulty has no relevant financial disclosures.
 

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Milk bad, cheese not? Dairy products tied to different CVD risks

Article Type
Changed
Wed, 10/26/2022 - 13:26

Results from an observational study exploring the link between dairy intake and risk of cardiovascular disease events in patients with stable angina pectoris suggest different dairy products may have different health effects.

The study, which analyzed a cohort from the Western Norway B-vitamin Intervention Trial (WENBIT), showed that higher dairy and milk consumption were associated with increased risk of mortality and stroke and butter was associated with an increased risk of acute myocardial infarction (AMI), but that cheese was associated with a decreased risk of AMI.

The findings are published in the European Journal of Preventive Cardiology.

“Dairy is a diverse food group, and different dairy products should be considered individually and not only in combination,” senior author Vegard Lysne, MSc, of the Centre for Nutrition, University of Bergen and the department of heart disease, Haukeland University Hospital, Bergen, Norway, said in an interview.

“Today’s dietary recommendations regarding dairy products are mainly based on the nutrient contents, with a focus on calcium, iodine, and saturated fat,” Dr. Lysne said.

Previous studies have indicated that different dairy products may influence cardiovascular health differently, even in opposite directions, but this has primarily been investigated in healthy populations, he noted.

“Data on CVD patients are scarce, and therefore, we wanted to investigate this in a population of patients with established CVD. Our primary aim in this study was to explore how the intake of different dairy products might be linked to cardiovascular outcomes and mortality in such a population,” he said.

The researchers analyzed 1,929 patients who had stable angina pectoris and were participants in WENBIT, a randomized, double-blind, placebo-controlled prospective secondary prevention study investigating the effect of vitamin B treatment on mortality and cardiovascular outcomes.

The majority, 80%, of the cohort were men, and the mean age of the patients was 61.8 years. In addition to stable angina pectoris, 47% of the cohort had hypertension, 31% had diabetes, and 29% were smokers. Most (90%) of the patients were taking acetylsalicylic acid, 90% were taking statins, and 77% were on beta-blockers.

Dietary data were obtained by a food frequency questionnaire that was given to patients at their first visit and returned either by mail or at a follow-up visit 1 month after the initial visit.

Frequency of consumption was given as times per day, week, month, or never consumed. Quantity was estimated using units such as slices, pieces, etc., or household measures.

The milk variable included high-fat, low-fat, skimmed, or unspecified milk. Cheese included brown cheese, which is a Norwegian caramel-like cheese made from whey, milk, and cream; white cheese; cream cheeses; cooked or processed cheeses; and boxed cheeses.

Total dairy was calculated as the sum, in grams, of milk, cheese, yogurt, cream, sour cream, ice cream, and butter.

Median follow-up times were 5.2 years for stroke, 7.8 years for AMI, and 14.1 years for mortality.

Patients who reported a higher intake of total dairy and milk had a higher risk of stroke and mortality.

Among those who reported a higher intake of total dairy, the hazard ratio for stroke was 1.4 (95% confidence interval [CI], 1.02-1.27).

Among those who reported a higher intake of milk, the HR for stroke was 1.13 (95% CI, 1.02-1.27).

Cardiovascular mortality appeared heightened in those who reported a higher intake of total dairy (HR, 1.06; 95% CI, 1.00-1.12) and in those who reported a higher intake of milk (HR, 1.07; 95% CI, 1.01-1.13).

Similarly, all-cause mortality was greater in those who reported higher total dairy consumption (HR, 1.07; 95% CI, 1.03-1.11) and in those who reported higher milk consumption (HR, 1.06; 95% CI, 1.03-1.10).

Higher cheese intake was inversely associated with AMI risk (HR, 0.92; 95% CI, 0.83-1.02).

Butter was associated with increased AMI risk (HR, 1.10; 95% CI, 0.97-1.24), as well as all-cause mortality (HR, 1.10; 95% CI, 1.00-1.20).

Dr. Lysne stressed that the results are from an observational study, and that doctors should not change what they tell their patients based on the results alone.

“There is a growing literature indicating that cheese might be linked to reduced cardiovascular risk, but if this is a causal effect, or if cheese is a marker of higher socioeconomic status and a healthier overall lifestyle remains unknown,” he said.

“I would like for future studies to evaluate dairy products on an individual basis, rather than a collective one. If the data suggest that different dairy products have distinct health effects, this should be implemented in dietary recommendations,” Dr. Lysne added.
 

 

 

Dairy a heterogeneous food group

“These results are not really surprising, because we have been hearing advice to consume low-fat milk, avoid whole milk, and so on, for a long time, so this study confirms what we already know,” Qi Sun, MD, ScD, associate professor in the departments of nutrition and epidemiology, Harvard T.H. Chan School of Public Health, Boston, told this news organization.

“However, I would be more specific about milk, and I don’t see any data regarding the fat content of the different types of milk. Their data only show the association for total milk. I would like to see data for low-fat milk versus high-fat milk in relation to heart disease,” Dr. Sun said.

“They also say in their conclusion that cheese was associated with a decreased risk of acute myocardial infarction, but as the hazard ratio shows, this is a nonsignificant association,” he said.

Dr. Sun agrees that dairy is a heterogeneous group of foods and that it is best to consider each type separately with regard to cardiovascular health.

“For example, heavy cream contains tons of saturated fat, butter contains a lot of saturated fat. Then there is yogurt, which also comes in regular, reduced-fat and low-fat varieties, which is a fantastic food. I would say it’s very healthy and is associated with a lower risk of heart disease and diabetes, so a good type of dairy. Yogurt and fermented dairy products should be beneficial, at least more so than full-fat milk or butter. I think butter and full-fat milk are still the primary dairy foods for people to avoid to reduce risk for cardiovascular disease,” he said.

Dr. Lysne and Dr. Sun have disclosed no relevant financial relationships.

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

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Results from an observational study exploring the link between dairy intake and risk of cardiovascular disease events in patients with stable angina pectoris suggest different dairy products may have different health effects.

The study, which analyzed a cohort from the Western Norway B-vitamin Intervention Trial (WENBIT), showed that higher dairy and milk consumption were associated with increased risk of mortality and stroke and butter was associated with an increased risk of acute myocardial infarction (AMI), but that cheese was associated with a decreased risk of AMI.

The findings are published in the European Journal of Preventive Cardiology.

“Dairy is a diverse food group, and different dairy products should be considered individually and not only in combination,” senior author Vegard Lysne, MSc, of the Centre for Nutrition, University of Bergen and the department of heart disease, Haukeland University Hospital, Bergen, Norway, said in an interview.

“Today’s dietary recommendations regarding dairy products are mainly based on the nutrient contents, with a focus on calcium, iodine, and saturated fat,” Dr. Lysne said.

Previous studies have indicated that different dairy products may influence cardiovascular health differently, even in opposite directions, but this has primarily been investigated in healthy populations, he noted.

“Data on CVD patients are scarce, and therefore, we wanted to investigate this in a population of patients with established CVD. Our primary aim in this study was to explore how the intake of different dairy products might be linked to cardiovascular outcomes and mortality in such a population,” he said.

The researchers analyzed 1,929 patients who had stable angina pectoris and were participants in WENBIT, a randomized, double-blind, placebo-controlled prospective secondary prevention study investigating the effect of vitamin B treatment on mortality and cardiovascular outcomes.

The majority, 80%, of the cohort were men, and the mean age of the patients was 61.8 years. In addition to stable angina pectoris, 47% of the cohort had hypertension, 31% had diabetes, and 29% were smokers. Most (90%) of the patients were taking acetylsalicylic acid, 90% were taking statins, and 77% were on beta-blockers.

Dietary data were obtained by a food frequency questionnaire that was given to patients at their first visit and returned either by mail or at a follow-up visit 1 month after the initial visit.

Frequency of consumption was given as times per day, week, month, or never consumed. Quantity was estimated using units such as slices, pieces, etc., or household measures.

The milk variable included high-fat, low-fat, skimmed, or unspecified milk. Cheese included brown cheese, which is a Norwegian caramel-like cheese made from whey, milk, and cream; white cheese; cream cheeses; cooked or processed cheeses; and boxed cheeses.

Total dairy was calculated as the sum, in grams, of milk, cheese, yogurt, cream, sour cream, ice cream, and butter.

Median follow-up times were 5.2 years for stroke, 7.8 years for AMI, and 14.1 years for mortality.

Patients who reported a higher intake of total dairy and milk had a higher risk of stroke and mortality.

Among those who reported a higher intake of total dairy, the hazard ratio for stroke was 1.4 (95% confidence interval [CI], 1.02-1.27).

Among those who reported a higher intake of milk, the HR for stroke was 1.13 (95% CI, 1.02-1.27).

Cardiovascular mortality appeared heightened in those who reported a higher intake of total dairy (HR, 1.06; 95% CI, 1.00-1.12) and in those who reported a higher intake of milk (HR, 1.07; 95% CI, 1.01-1.13).

Similarly, all-cause mortality was greater in those who reported higher total dairy consumption (HR, 1.07; 95% CI, 1.03-1.11) and in those who reported higher milk consumption (HR, 1.06; 95% CI, 1.03-1.10).

Higher cheese intake was inversely associated with AMI risk (HR, 0.92; 95% CI, 0.83-1.02).

Butter was associated with increased AMI risk (HR, 1.10; 95% CI, 0.97-1.24), as well as all-cause mortality (HR, 1.10; 95% CI, 1.00-1.20).

Dr. Lysne stressed that the results are from an observational study, and that doctors should not change what they tell their patients based on the results alone.

“There is a growing literature indicating that cheese might be linked to reduced cardiovascular risk, but if this is a causal effect, or if cheese is a marker of higher socioeconomic status and a healthier overall lifestyle remains unknown,” he said.

“I would like for future studies to evaluate dairy products on an individual basis, rather than a collective one. If the data suggest that different dairy products have distinct health effects, this should be implemented in dietary recommendations,” Dr. Lysne added.
 

 

 

Dairy a heterogeneous food group

“These results are not really surprising, because we have been hearing advice to consume low-fat milk, avoid whole milk, and so on, for a long time, so this study confirms what we already know,” Qi Sun, MD, ScD, associate professor in the departments of nutrition and epidemiology, Harvard T.H. Chan School of Public Health, Boston, told this news organization.

“However, I would be more specific about milk, and I don’t see any data regarding the fat content of the different types of milk. Their data only show the association for total milk. I would like to see data for low-fat milk versus high-fat milk in relation to heart disease,” Dr. Sun said.

“They also say in their conclusion that cheese was associated with a decreased risk of acute myocardial infarction, but as the hazard ratio shows, this is a nonsignificant association,” he said.

Dr. Sun agrees that dairy is a heterogeneous group of foods and that it is best to consider each type separately with regard to cardiovascular health.

“For example, heavy cream contains tons of saturated fat, butter contains a lot of saturated fat. Then there is yogurt, which also comes in regular, reduced-fat and low-fat varieties, which is a fantastic food. I would say it’s very healthy and is associated with a lower risk of heart disease and diabetes, so a good type of dairy. Yogurt and fermented dairy products should be beneficial, at least more so than full-fat milk or butter. I think butter and full-fat milk are still the primary dairy foods for people to avoid to reduce risk for cardiovascular disease,” he said.

Dr. Lysne and Dr. Sun have disclosed no relevant financial relationships.

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

Results from an observational study exploring the link between dairy intake and risk of cardiovascular disease events in patients with stable angina pectoris suggest different dairy products may have different health effects.

The study, which analyzed a cohort from the Western Norway B-vitamin Intervention Trial (WENBIT), showed that higher dairy and milk consumption were associated with increased risk of mortality and stroke and butter was associated with an increased risk of acute myocardial infarction (AMI), but that cheese was associated with a decreased risk of AMI.

The findings are published in the European Journal of Preventive Cardiology.

“Dairy is a diverse food group, and different dairy products should be considered individually and not only in combination,” senior author Vegard Lysne, MSc, of the Centre for Nutrition, University of Bergen and the department of heart disease, Haukeland University Hospital, Bergen, Norway, said in an interview.

“Today’s dietary recommendations regarding dairy products are mainly based on the nutrient contents, with a focus on calcium, iodine, and saturated fat,” Dr. Lysne said.

Previous studies have indicated that different dairy products may influence cardiovascular health differently, even in opposite directions, but this has primarily been investigated in healthy populations, he noted.

“Data on CVD patients are scarce, and therefore, we wanted to investigate this in a population of patients with established CVD. Our primary aim in this study was to explore how the intake of different dairy products might be linked to cardiovascular outcomes and mortality in such a population,” he said.

The researchers analyzed 1,929 patients who had stable angina pectoris and were participants in WENBIT, a randomized, double-blind, placebo-controlled prospective secondary prevention study investigating the effect of vitamin B treatment on mortality and cardiovascular outcomes.

The majority, 80%, of the cohort were men, and the mean age of the patients was 61.8 years. In addition to stable angina pectoris, 47% of the cohort had hypertension, 31% had diabetes, and 29% were smokers. Most (90%) of the patients were taking acetylsalicylic acid, 90% were taking statins, and 77% were on beta-blockers.

Dietary data were obtained by a food frequency questionnaire that was given to patients at their first visit and returned either by mail or at a follow-up visit 1 month after the initial visit.

Frequency of consumption was given as times per day, week, month, or never consumed. Quantity was estimated using units such as slices, pieces, etc., or household measures.

The milk variable included high-fat, low-fat, skimmed, or unspecified milk. Cheese included brown cheese, which is a Norwegian caramel-like cheese made from whey, milk, and cream; white cheese; cream cheeses; cooked or processed cheeses; and boxed cheeses.

Total dairy was calculated as the sum, in grams, of milk, cheese, yogurt, cream, sour cream, ice cream, and butter.

Median follow-up times were 5.2 years for stroke, 7.8 years for AMI, and 14.1 years for mortality.

Patients who reported a higher intake of total dairy and milk had a higher risk of stroke and mortality.

Among those who reported a higher intake of total dairy, the hazard ratio for stroke was 1.4 (95% confidence interval [CI], 1.02-1.27).

Among those who reported a higher intake of milk, the HR for stroke was 1.13 (95% CI, 1.02-1.27).

Cardiovascular mortality appeared heightened in those who reported a higher intake of total dairy (HR, 1.06; 95% CI, 1.00-1.12) and in those who reported a higher intake of milk (HR, 1.07; 95% CI, 1.01-1.13).

Similarly, all-cause mortality was greater in those who reported higher total dairy consumption (HR, 1.07; 95% CI, 1.03-1.11) and in those who reported higher milk consumption (HR, 1.06; 95% CI, 1.03-1.10).

Higher cheese intake was inversely associated with AMI risk (HR, 0.92; 95% CI, 0.83-1.02).

Butter was associated with increased AMI risk (HR, 1.10; 95% CI, 0.97-1.24), as well as all-cause mortality (HR, 1.10; 95% CI, 1.00-1.20).

Dr. Lysne stressed that the results are from an observational study, and that doctors should not change what they tell their patients based on the results alone.

“There is a growing literature indicating that cheese might be linked to reduced cardiovascular risk, but if this is a causal effect, or if cheese is a marker of higher socioeconomic status and a healthier overall lifestyle remains unknown,” he said.

“I would like for future studies to evaluate dairy products on an individual basis, rather than a collective one. If the data suggest that different dairy products have distinct health effects, this should be implemented in dietary recommendations,” Dr. Lysne added.
 

 

 

Dairy a heterogeneous food group

“These results are not really surprising, because we have been hearing advice to consume low-fat milk, avoid whole milk, and so on, for a long time, so this study confirms what we already know,” Qi Sun, MD, ScD, associate professor in the departments of nutrition and epidemiology, Harvard T.H. Chan School of Public Health, Boston, told this news organization.

“However, I would be more specific about milk, and I don’t see any data regarding the fat content of the different types of milk. Their data only show the association for total milk. I would like to see data for low-fat milk versus high-fat milk in relation to heart disease,” Dr. Sun said.

“They also say in their conclusion that cheese was associated with a decreased risk of acute myocardial infarction, but as the hazard ratio shows, this is a nonsignificant association,” he said.

Dr. Sun agrees that dairy is a heterogeneous group of foods and that it is best to consider each type separately with regard to cardiovascular health.

“For example, heavy cream contains tons of saturated fat, butter contains a lot of saturated fat. Then there is yogurt, which also comes in regular, reduced-fat and low-fat varieties, which is a fantastic food. I would say it’s very healthy and is associated with a lower risk of heart disease and diabetes, so a good type of dairy. Yogurt and fermented dairy products should be beneficial, at least more so than full-fat milk or butter. I think butter and full-fat milk are still the primary dairy foods for people to avoid to reduce risk for cardiovascular disease,” he said.

Dr. Lysne and Dr. Sun have disclosed no relevant financial relationships.

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

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FROM EUROPEAN JOURNAL OF PREVENTIVE CARDIOLOGY

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The lives of drug users are more important than stopping drug use

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Fri, 10/28/2022 - 12:47

One quiet afternoon at a mobile outreach clinic, where I had been working on the West Side of Chicago, a young man without a home to go to, and clothes he kept as clean as he could, came to get a refill of buprenorphine. The drug, which works on the same opioid receptors as heroin, was helping him feel normal. It was also probably helping to keep him alive, as a study found that taking it after an overdose was associated with a one-third reduction in all-cause mortality.

Dr. Elisabeth Poorman

He was still using drugs, but now only a few days a week instead of multiple times a day. He had put on some weight and looked visibly healthier.

I gave him his prescription and thanked him for coming back. As he got up to leave, he turned to our outreach team and said, “Thank you for being here and caring about us. Because a lot of people don’t. They don’t care if we live or die.”

But a lot of people do care and are still failing him and others who use drugs. When I first started treating addictions, I was taught to cut people like him off treatment. We could give patients a medication, but they had to follow the rules, first and foremost to stop using drugs. Keep using, even if you were using less and your health was improving, and I would have to dismiss you from the practice. This was the kind of “tough love” that many doctors have been taught, and are, in many cases, still being taught today. Even though we know that this approach does not work.

For too long, doctors, nurses, caregivers, and the broader American public have favored abstinence only treatment, criminalization, and prohibition. The proof that this approach does not work is in the spectacular overdose crisis we are experiencing in this country, as CDC data documents. While we continue to blame drugs like fentanyl and methamphetamine (and thirty years ago, crack and heroin), we fail to see how our approach contributes to these overdose deaths.

For instance, treating with buprenorphine or methadone was associated with reductions in overdose and serious opioid-related acute care use compared with detox alone. But only one in three centers offer these medications, the gold standard of care. We continue to imprison people who use drugs, even though we have known for 15 years that the risk of overdose is exponentially higher in the first few weeks after people leave prison.

Patients who use opioids safely for decades are also arbitrarily being forced off their prescriptions because too many clinicians equate opioid use with opioid addiction, despite the fact that opioid tapering was associated with increased rates of overdose. And prohibition has led to a change in the drug supply that is now dominated by methamphetamine and fentanyl, substances far more deadly than the ones we demonized and seized decades ago.

We have tried and failed to rid the country of many drugs. We never will. Human beings will seek mind-altering substances, from caffeine to alcohol to hallucinogens. But we can stop the grim massacre of people who use drugs. We have the tools. What we lack is moral clarity.

In lecture after lecture of physicians and medical students, I hear the refrain that patients are not often “ready” for treatment. There’s nothing that doctors can do, they say, if the patient doesn’t want help. Yet they do not examine why that may be. Are we offering the help that they need? Time and again I have seen that if we meet people where they are, we can help virtually anyone.
 

 

 

Tools for fighting the opioid crisis

The reason our policies have failed is because we have not confronted a simple truth: We must care more about saving and improving the lives of people who use drugs than stopping drug use. With that framework, the approach is clear and multifactorial. First, we must make methadone treatment less draconian. Methadone, like buprenorphine, has been associated with a large reduction in all-cause mortality for people who have a history of overdose.

In this country, to access it, however, you must go to a clinic daily for the first 90 days of treatment and jump through hoops that often make it impossible to have a job and accomplish other goals. Other countries have safely moved methadone to primary care offices, and so should we. The other main drug for opioid addiction, buprenorphine, requires a special license to prescribe, even though it is far safer than other opioids that any physician can prescribe. This requirement has been weakened, but it should be removed entirely.

Moreover, the DEA conducts regular audits of buprenorphine prescribers in an effort to prevent diversion, discouraging doctors from prescribing it. This despite the fact that it is almost impossible to overdose on buprenorphine alone, and a study suggests that diversion of buprenorphine is associated with a lower overdose risk in a community by making the medication available to more people who can benefit.

Treatment is not the only way we can help people using drugs. Naloxone, an overdose rescue drug, should be available in every first aid kit and free at pharmacies without a prescription. Clean needles and pipes for people who use can help prevent infections, potentially mitigating the severity of outbreaks. Overdose prevention sites, where people can safely use, should be opened across the country.

We need accessible drug testing so people do not accidentally overdose and so they can know what they are using. We should stop sending people to jail for drug use when we know that it is too often tantamount to a death sentence, and offer effective medical treatment to anyone who is incarcerated.

All these interventions remain controversial within medicine and in the larger culture. If our metric, however, is lives saved and harm avoided, these are sure-fire approaches.

Right now, I am focused on clinical care and changing the culture of medicine, where we have opportunities to help but too often do harm instead. The impact of a shift in mentality would be huge, because we would realize there is no one we cannot help, only millions of people we do not listen to. But this is a national crisis and requires a national response. Until we are clear that our goal should and must be to stem the mounting deaths and harms above all else, we will continue to fail.

Dr. Poorman is board certified in internal medicine and addiction medicine, assistant professor of medicine, University of Illinois at Chicago, and provides primary care and addiction services in Chicago. Her views do not necessarily reflect the views of her employer. She has reported no relevant disclosures.

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One quiet afternoon at a mobile outreach clinic, where I had been working on the West Side of Chicago, a young man without a home to go to, and clothes he kept as clean as he could, came to get a refill of buprenorphine. The drug, which works on the same opioid receptors as heroin, was helping him feel normal. It was also probably helping to keep him alive, as a study found that taking it after an overdose was associated with a one-third reduction in all-cause mortality.

Dr. Elisabeth Poorman

He was still using drugs, but now only a few days a week instead of multiple times a day. He had put on some weight and looked visibly healthier.

I gave him his prescription and thanked him for coming back. As he got up to leave, he turned to our outreach team and said, “Thank you for being here and caring about us. Because a lot of people don’t. They don’t care if we live or die.”

But a lot of people do care and are still failing him and others who use drugs. When I first started treating addictions, I was taught to cut people like him off treatment. We could give patients a medication, but they had to follow the rules, first and foremost to stop using drugs. Keep using, even if you were using less and your health was improving, and I would have to dismiss you from the practice. This was the kind of “tough love” that many doctors have been taught, and are, in many cases, still being taught today. Even though we know that this approach does not work.

For too long, doctors, nurses, caregivers, and the broader American public have favored abstinence only treatment, criminalization, and prohibition. The proof that this approach does not work is in the spectacular overdose crisis we are experiencing in this country, as CDC data documents. While we continue to blame drugs like fentanyl and methamphetamine (and thirty years ago, crack and heroin), we fail to see how our approach contributes to these overdose deaths.

For instance, treating with buprenorphine or methadone was associated with reductions in overdose and serious opioid-related acute care use compared with detox alone. But only one in three centers offer these medications, the gold standard of care. We continue to imprison people who use drugs, even though we have known for 15 years that the risk of overdose is exponentially higher in the first few weeks after people leave prison.

Patients who use opioids safely for decades are also arbitrarily being forced off their prescriptions because too many clinicians equate opioid use with opioid addiction, despite the fact that opioid tapering was associated with increased rates of overdose. And prohibition has led to a change in the drug supply that is now dominated by methamphetamine and fentanyl, substances far more deadly than the ones we demonized and seized decades ago.

We have tried and failed to rid the country of many drugs. We never will. Human beings will seek mind-altering substances, from caffeine to alcohol to hallucinogens. But we can stop the grim massacre of people who use drugs. We have the tools. What we lack is moral clarity.

In lecture after lecture of physicians and medical students, I hear the refrain that patients are not often “ready” for treatment. There’s nothing that doctors can do, they say, if the patient doesn’t want help. Yet they do not examine why that may be. Are we offering the help that they need? Time and again I have seen that if we meet people where they are, we can help virtually anyone.
 

 

 

Tools for fighting the opioid crisis

The reason our policies have failed is because we have not confronted a simple truth: We must care more about saving and improving the lives of people who use drugs than stopping drug use. With that framework, the approach is clear and multifactorial. First, we must make methadone treatment less draconian. Methadone, like buprenorphine, has been associated with a large reduction in all-cause mortality for people who have a history of overdose.

In this country, to access it, however, you must go to a clinic daily for the first 90 days of treatment and jump through hoops that often make it impossible to have a job and accomplish other goals. Other countries have safely moved methadone to primary care offices, and so should we. The other main drug for opioid addiction, buprenorphine, requires a special license to prescribe, even though it is far safer than other opioids that any physician can prescribe. This requirement has been weakened, but it should be removed entirely.

Moreover, the DEA conducts regular audits of buprenorphine prescribers in an effort to prevent diversion, discouraging doctors from prescribing it. This despite the fact that it is almost impossible to overdose on buprenorphine alone, and a study suggests that diversion of buprenorphine is associated with a lower overdose risk in a community by making the medication available to more people who can benefit.

Treatment is not the only way we can help people using drugs. Naloxone, an overdose rescue drug, should be available in every first aid kit and free at pharmacies without a prescription. Clean needles and pipes for people who use can help prevent infections, potentially mitigating the severity of outbreaks. Overdose prevention sites, where people can safely use, should be opened across the country.

We need accessible drug testing so people do not accidentally overdose and so they can know what they are using. We should stop sending people to jail for drug use when we know that it is too often tantamount to a death sentence, and offer effective medical treatment to anyone who is incarcerated.

All these interventions remain controversial within medicine and in the larger culture. If our metric, however, is lives saved and harm avoided, these are sure-fire approaches.

Right now, I am focused on clinical care and changing the culture of medicine, where we have opportunities to help but too often do harm instead. The impact of a shift in mentality would be huge, because we would realize there is no one we cannot help, only millions of people we do not listen to. But this is a national crisis and requires a national response. Until we are clear that our goal should and must be to stem the mounting deaths and harms above all else, we will continue to fail.

Dr. Poorman is board certified in internal medicine and addiction medicine, assistant professor of medicine, University of Illinois at Chicago, and provides primary care and addiction services in Chicago. Her views do not necessarily reflect the views of her employer. She has reported no relevant disclosures.

One quiet afternoon at a mobile outreach clinic, where I had been working on the West Side of Chicago, a young man without a home to go to, and clothes he kept as clean as he could, came to get a refill of buprenorphine. The drug, which works on the same opioid receptors as heroin, was helping him feel normal. It was also probably helping to keep him alive, as a study found that taking it after an overdose was associated with a one-third reduction in all-cause mortality.

Dr. Elisabeth Poorman

He was still using drugs, but now only a few days a week instead of multiple times a day. He had put on some weight and looked visibly healthier.

I gave him his prescription and thanked him for coming back. As he got up to leave, he turned to our outreach team and said, “Thank you for being here and caring about us. Because a lot of people don’t. They don’t care if we live or die.”

But a lot of people do care and are still failing him and others who use drugs. When I first started treating addictions, I was taught to cut people like him off treatment. We could give patients a medication, but they had to follow the rules, first and foremost to stop using drugs. Keep using, even if you were using less and your health was improving, and I would have to dismiss you from the practice. This was the kind of “tough love” that many doctors have been taught, and are, in many cases, still being taught today. Even though we know that this approach does not work.

For too long, doctors, nurses, caregivers, and the broader American public have favored abstinence only treatment, criminalization, and prohibition. The proof that this approach does not work is in the spectacular overdose crisis we are experiencing in this country, as CDC data documents. While we continue to blame drugs like fentanyl and methamphetamine (and thirty years ago, crack and heroin), we fail to see how our approach contributes to these overdose deaths.

For instance, treating with buprenorphine or methadone was associated with reductions in overdose and serious opioid-related acute care use compared with detox alone. But only one in three centers offer these medications, the gold standard of care. We continue to imprison people who use drugs, even though we have known for 15 years that the risk of overdose is exponentially higher in the first few weeks after people leave prison.

Patients who use opioids safely for decades are also arbitrarily being forced off their prescriptions because too many clinicians equate opioid use with opioid addiction, despite the fact that opioid tapering was associated with increased rates of overdose. And prohibition has led to a change in the drug supply that is now dominated by methamphetamine and fentanyl, substances far more deadly than the ones we demonized and seized decades ago.

We have tried and failed to rid the country of many drugs. We never will. Human beings will seek mind-altering substances, from caffeine to alcohol to hallucinogens. But we can stop the grim massacre of people who use drugs. We have the tools. What we lack is moral clarity.

In lecture after lecture of physicians and medical students, I hear the refrain that patients are not often “ready” for treatment. There’s nothing that doctors can do, they say, if the patient doesn’t want help. Yet they do not examine why that may be. Are we offering the help that they need? Time and again I have seen that if we meet people where they are, we can help virtually anyone.
 

 

 

Tools for fighting the opioid crisis

The reason our policies have failed is because we have not confronted a simple truth: We must care more about saving and improving the lives of people who use drugs than stopping drug use. With that framework, the approach is clear and multifactorial. First, we must make methadone treatment less draconian. Methadone, like buprenorphine, has been associated with a large reduction in all-cause mortality for people who have a history of overdose.

In this country, to access it, however, you must go to a clinic daily for the first 90 days of treatment and jump through hoops that often make it impossible to have a job and accomplish other goals. Other countries have safely moved methadone to primary care offices, and so should we. The other main drug for opioid addiction, buprenorphine, requires a special license to prescribe, even though it is far safer than other opioids that any physician can prescribe. This requirement has been weakened, but it should be removed entirely.

Moreover, the DEA conducts regular audits of buprenorphine prescribers in an effort to prevent diversion, discouraging doctors from prescribing it. This despite the fact that it is almost impossible to overdose on buprenorphine alone, and a study suggests that diversion of buprenorphine is associated with a lower overdose risk in a community by making the medication available to more people who can benefit.

Treatment is not the only way we can help people using drugs. Naloxone, an overdose rescue drug, should be available in every first aid kit and free at pharmacies without a prescription. Clean needles and pipes for people who use can help prevent infections, potentially mitigating the severity of outbreaks. Overdose prevention sites, where people can safely use, should be opened across the country.

We need accessible drug testing so people do not accidentally overdose and so they can know what they are using. We should stop sending people to jail for drug use when we know that it is too often tantamount to a death sentence, and offer effective medical treatment to anyone who is incarcerated.

All these interventions remain controversial within medicine and in the larger culture. If our metric, however, is lives saved and harm avoided, these are sure-fire approaches.

Right now, I am focused on clinical care and changing the culture of medicine, where we have opportunities to help but too often do harm instead. The impact of a shift in mentality would be huge, because we would realize there is no one we cannot help, only millions of people we do not listen to. But this is a national crisis and requires a national response. Until we are clear that our goal should and must be to stem the mounting deaths and harms above all else, we will continue to fail.

Dr. Poorman is board certified in internal medicine and addiction medicine, assistant professor of medicine, University of Illinois at Chicago, and provides primary care and addiction services in Chicago. Her views do not necessarily reflect the views of her employer. She has reported no relevant disclosures.

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Stroke management: There’s an app for that

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Thu, 12/15/2022 - 15:36

In the management of acute and chronic stroke, smartphone apps enhance communication between first responders and waiting hospital staff and reduce door-to-needle time, according to a literature review.

“In clinical practice, guideline-driven patient care is very important in improving diagnosis and outcomes, and apps provide a very practical and easy way to check available guidelines,” senior author Fabio Pilato, MD, a neurologist at Università Campus Bio-Medico, Rome, told this news organization.

The review was published  in the Journal of Stroke.
 

Reviewing the literature

“My colleagues and I wanted to discover whether smartphone apps, besides just facilitating communication between doctors and their patients, could improve patient care,” said Dr. Pilato. “We wanted to see if there were any apps that could guide clinical decisions according to guidelines and whether there were some being used in acute stroke management,” he added.

The investigators reviewed 43 studies of stroke-related mobile phone apps that were designed for the clinical management of stroke between June 1, 2007, when the first iPhone was introduced, and Jan. 31, 2022.

The apps were classified into the following three groups, according to their purpose: primary prevention apps, acute stroke management apps, and postacute stroke apps.
 

Prevention and management

The investigators found one primary prevention app, the Stroke Riskometer, that was based on an algorithm derived from the Framingham Stroke Risk Score and was designed to educate patients about diet, physical activity, and the warning signs of stroke. However, their review failed to show that the app was beneficial, compared with standard cardiovascular risk reduction.

Apps appeared to aid acute stroke management, according to the researchers. Prehospital apps, such as iLAMA, Smartphone-Assisted Pre-Hospital Medical Information System, FAST-ED, Egyptian Stroke Network, Act Fast, and the Mayo Clinic Acute Stroke Evaluation app were found to speed up stroke recognition, activate emergency medical services for speedier transport to the hospital, and facilitate communication with in-hospital stroke teams. All these prehospital apps reduced door-to-needle time.

The JOIN app also was shown to significantly reduce door-to-needle time, compared with no app support, in several studies. JOIN consists of a chat, a DICOM viewer, and an encrypted two-way video system for video calls between practitioners, as well as a milestones time stamp to record every step from home to hospital transportation to therapy onset. 

StopStroke, another app that focuses on instant communication among physicians and allows real-time sharing of clinical data of stroke patients, reduced door-to-image and door-to-needle time, compared with no app.

Act Fast, which uses a National Institutes of Health Stroke Scale (NIHSS) calculator, a thrombolysis checklist, and a toolbox to share images and notes among practitioners involved in the decision-making process, decreased door-to-needle time by 16 minutes, compared with no app.

In a study of medical residents, adherence to guidelines was higher in participants who used the Mayo Clinic Acute Stroke Evaluation app, compared with those who did not. Door-to-needle time also was reduced by 16 minutes in the app-assisted group, compared with controls.
 

Postacute stroke apps

The Rehabilitation Guardian app, consisting of a health reminder, consultation, health information, and patient diary, gives medical information and provides rehabilitation exercises. Patients can enter their clinical information, and the medical staff can access it and assist with the rehab process remotely.

As for apps for chronic management and secondary prevention, Dr. Pilato and colleagues found that the PRESTRO app, which combines motivational support for a healthy lifestyle and tells patients to take their medications and measure their blood pressure, successfully got patients to be more physically active, compared with those who did not use the app.

Another app for secondary prevention, the Korea University Health Monitoring System for Stroke (KUHMS2), reduced blood pressure and glucose levels in patients who used it, compared with those who did not.

Lose It, a weight loss app, is an electronic food journal that shows the values of the macronutrients of foods that the patient consumes, as well as a daily calorie count. The Engaging Everyday Activities app effectively reminds patients who have had transient ischemic attacks about daily activities that can reduce their risk for a recurrent attack.

Movies4Stroke features educational videos about first aid, rehabilitation, how to improve swallowing, and stroke risk factors.

AFib 2gether allows patients to enter their clinical data and calculates their annual stroke risk scores. The information is provided to a health care provider before the next visit to help the patient make an informed decision about anticoagulation therapy.

“We believe that the widespread use of smartphones and apps may improve patient care in every part of the world and in particular in those parts where updated guideline consultation is not readily available. However, in our study we found that apps to implement guidelines by a clinical decision support system are still lacking. Our hope is that these apps will increase in the future,” said Dr. Pilato.
 

No panacea

Commenting on this review for this article, Amy Guzik, MD, associate professor of neurology at Wake Forest University School of Medicine, Winston-Salem, N.C., said that all physicians are looking for opportunities to use technology, especially in stroke, to diagnose and treat patients in the best way they can.

“Figuring out ways to increase efficiency and get the word out to our patients is very important to us and is probably why there are so many apps out there,” said Dr. Guzik.

“There are some ways such apps could be particularly useful. One is in remote hospitals that might not have a neurologist. Helping with the diagnosis and determining what is a bad stroke that needs to go to a higher level of medical care, or whether it is something the local hospital could take care of, would be useful,” said Dr. Guzik.

“Also helping EMS figure out which hospital to go to, or once they are on their way, being able to talk to the neurologist or neurosurgeon or the emergency room doctor and make a plan before the patient gets here, so we can expedite care when the patient arrives, is where apps can be particularly useful,” she added.

There are limitations to what apps can do, however. In the case of stroke, patients may often have important barriers that do not allow them to use apps at all, she said.

“Regardless of how they are being taken care of, a lot of our stroke patients will have problems with technology. A stroke can make texting difficult. Patients may have language difficulties, weakness, or cognitive impairment. They are relying on caregivers. All of this makes it difficult for a tech solution to be the automatic solution, unless things are done in a thoughtful way to make sure that it is appropriate for stroke patients.

“Also, there are a lot of elderly patients who may not necessarily be the most tech savvy and do not have as much digital literacy as younger patients. Another limitation to consider is that some people may not even have easy access to technology. So we must make sure that this is all done with an equity focus,” said Dr. Guzik.

The study was funded by the Associazione Nazionale fra le Imprese Assicuratrici (ANIA). Dr. Pilato and Dr. Guzik reported no relevant financial relationships.

 

 

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

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In the management of acute and chronic stroke, smartphone apps enhance communication between first responders and waiting hospital staff and reduce door-to-needle time, according to a literature review.

“In clinical practice, guideline-driven patient care is very important in improving diagnosis and outcomes, and apps provide a very practical and easy way to check available guidelines,” senior author Fabio Pilato, MD, a neurologist at Università Campus Bio-Medico, Rome, told this news organization.

The review was published  in the Journal of Stroke.
 

Reviewing the literature

“My colleagues and I wanted to discover whether smartphone apps, besides just facilitating communication between doctors and their patients, could improve patient care,” said Dr. Pilato. “We wanted to see if there were any apps that could guide clinical decisions according to guidelines and whether there were some being used in acute stroke management,” he added.

The investigators reviewed 43 studies of stroke-related mobile phone apps that were designed for the clinical management of stroke between June 1, 2007, when the first iPhone was introduced, and Jan. 31, 2022.

The apps were classified into the following three groups, according to their purpose: primary prevention apps, acute stroke management apps, and postacute stroke apps.
 

Prevention and management

The investigators found one primary prevention app, the Stroke Riskometer, that was based on an algorithm derived from the Framingham Stroke Risk Score and was designed to educate patients about diet, physical activity, and the warning signs of stroke. However, their review failed to show that the app was beneficial, compared with standard cardiovascular risk reduction.

Apps appeared to aid acute stroke management, according to the researchers. Prehospital apps, such as iLAMA, Smartphone-Assisted Pre-Hospital Medical Information System, FAST-ED, Egyptian Stroke Network, Act Fast, and the Mayo Clinic Acute Stroke Evaluation app were found to speed up stroke recognition, activate emergency medical services for speedier transport to the hospital, and facilitate communication with in-hospital stroke teams. All these prehospital apps reduced door-to-needle time.

The JOIN app also was shown to significantly reduce door-to-needle time, compared with no app support, in several studies. JOIN consists of a chat, a DICOM viewer, and an encrypted two-way video system for video calls between practitioners, as well as a milestones time stamp to record every step from home to hospital transportation to therapy onset. 

StopStroke, another app that focuses on instant communication among physicians and allows real-time sharing of clinical data of stroke patients, reduced door-to-image and door-to-needle time, compared with no app.

Act Fast, which uses a National Institutes of Health Stroke Scale (NIHSS) calculator, a thrombolysis checklist, and a toolbox to share images and notes among practitioners involved in the decision-making process, decreased door-to-needle time by 16 minutes, compared with no app.

In a study of medical residents, adherence to guidelines was higher in participants who used the Mayo Clinic Acute Stroke Evaluation app, compared with those who did not. Door-to-needle time also was reduced by 16 minutes in the app-assisted group, compared with controls.
 

Postacute stroke apps

The Rehabilitation Guardian app, consisting of a health reminder, consultation, health information, and patient diary, gives medical information and provides rehabilitation exercises. Patients can enter their clinical information, and the medical staff can access it and assist with the rehab process remotely.

As for apps for chronic management and secondary prevention, Dr. Pilato and colleagues found that the PRESTRO app, which combines motivational support for a healthy lifestyle and tells patients to take their medications and measure their blood pressure, successfully got patients to be more physically active, compared with those who did not use the app.

Another app for secondary prevention, the Korea University Health Monitoring System for Stroke (KUHMS2), reduced blood pressure and glucose levels in patients who used it, compared with those who did not.

Lose It, a weight loss app, is an electronic food journal that shows the values of the macronutrients of foods that the patient consumes, as well as a daily calorie count. The Engaging Everyday Activities app effectively reminds patients who have had transient ischemic attacks about daily activities that can reduce their risk for a recurrent attack.

Movies4Stroke features educational videos about first aid, rehabilitation, how to improve swallowing, and stroke risk factors.

AFib 2gether allows patients to enter their clinical data and calculates their annual stroke risk scores. The information is provided to a health care provider before the next visit to help the patient make an informed decision about anticoagulation therapy.

“We believe that the widespread use of smartphones and apps may improve patient care in every part of the world and in particular in those parts where updated guideline consultation is not readily available. However, in our study we found that apps to implement guidelines by a clinical decision support system are still lacking. Our hope is that these apps will increase in the future,” said Dr. Pilato.
 

No panacea

Commenting on this review for this article, Amy Guzik, MD, associate professor of neurology at Wake Forest University School of Medicine, Winston-Salem, N.C., said that all physicians are looking for opportunities to use technology, especially in stroke, to diagnose and treat patients in the best way they can.

“Figuring out ways to increase efficiency and get the word out to our patients is very important to us and is probably why there are so many apps out there,” said Dr. Guzik.

“There are some ways such apps could be particularly useful. One is in remote hospitals that might not have a neurologist. Helping with the diagnosis and determining what is a bad stroke that needs to go to a higher level of medical care, or whether it is something the local hospital could take care of, would be useful,” said Dr. Guzik.

“Also helping EMS figure out which hospital to go to, or once they are on their way, being able to talk to the neurologist or neurosurgeon or the emergency room doctor and make a plan before the patient gets here, so we can expedite care when the patient arrives, is where apps can be particularly useful,” she added.

There are limitations to what apps can do, however. In the case of stroke, patients may often have important barriers that do not allow them to use apps at all, she said.

“Regardless of how they are being taken care of, a lot of our stroke patients will have problems with technology. A stroke can make texting difficult. Patients may have language difficulties, weakness, or cognitive impairment. They are relying on caregivers. All of this makes it difficult for a tech solution to be the automatic solution, unless things are done in a thoughtful way to make sure that it is appropriate for stroke patients.

“Also, there are a lot of elderly patients who may not necessarily be the most tech savvy and do not have as much digital literacy as younger patients. Another limitation to consider is that some people may not even have easy access to technology. So we must make sure that this is all done with an equity focus,” said Dr. Guzik.

The study was funded by the Associazione Nazionale fra le Imprese Assicuratrici (ANIA). Dr. Pilato and Dr. Guzik reported no relevant financial relationships.

 

 

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

In the management of acute and chronic stroke, smartphone apps enhance communication between first responders and waiting hospital staff and reduce door-to-needle time, according to a literature review.

“In clinical practice, guideline-driven patient care is very important in improving diagnosis and outcomes, and apps provide a very practical and easy way to check available guidelines,” senior author Fabio Pilato, MD, a neurologist at Università Campus Bio-Medico, Rome, told this news organization.

The review was published  in the Journal of Stroke.
 

Reviewing the literature

“My colleagues and I wanted to discover whether smartphone apps, besides just facilitating communication between doctors and their patients, could improve patient care,” said Dr. Pilato. “We wanted to see if there were any apps that could guide clinical decisions according to guidelines and whether there were some being used in acute stroke management,” he added.

The investigators reviewed 43 studies of stroke-related mobile phone apps that were designed for the clinical management of stroke between June 1, 2007, when the first iPhone was introduced, and Jan. 31, 2022.

The apps were classified into the following three groups, according to their purpose: primary prevention apps, acute stroke management apps, and postacute stroke apps.
 

Prevention and management

The investigators found one primary prevention app, the Stroke Riskometer, that was based on an algorithm derived from the Framingham Stroke Risk Score and was designed to educate patients about diet, physical activity, and the warning signs of stroke. However, their review failed to show that the app was beneficial, compared with standard cardiovascular risk reduction.

Apps appeared to aid acute stroke management, according to the researchers. Prehospital apps, such as iLAMA, Smartphone-Assisted Pre-Hospital Medical Information System, FAST-ED, Egyptian Stroke Network, Act Fast, and the Mayo Clinic Acute Stroke Evaluation app were found to speed up stroke recognition, activate emergency medical services for speedier transport to the hospital, and facilitate communication with in-hospital stroke teams. All these prehospital apps reduced door-to-needle time.

The JOIN app also was shown to significantly reduce door-to-needle time, compared with no app support, in several studies. JOIN consists of a chat, a DICOM viewer, and an encrypted two-way video system for video calls between practitioners, as well as a milestones time stamp to record every step from home to hospital transportation to therapy onset. 

StopStroke, another app that focuses on instant communication among physicians and allows real-time sharing of clinical data of stroke patients, reduced door-to-image and door-to-needle time, compared with no app.

Act Fast, which uses a National Institutes of Health Stroke Scale (NIHSS) calculator, a thrombolysis checklist, and a toolbox to share images and notes among practitioners involved in the decision-making process, decreased door-to-needle time by 16 minutes, compared with no app.

In a study of medical residents, adherence to guidelines was higher in participants who used the Mayo Clinic Acute Stroke Evaluation app, compared with those who did not. Door-to-needle time also was reduced by 16 minutes in the app-assisted group, compared with controls.
 

Postacute stroke apps

The Rehabilitation Guardian app, consisting of a health reminder, consultation, health information, and patient diary, gives medical information and provides rehabilitation exercises. Patients can enter their clinical information, and the medical staff can access it and assist with the rehab process remotely.

As for apps for chronic management and secondary prevention, Dr. Pilato and colleagues found that the PRESTRO app, which combines motivational support for a healthy lifestyle and tells patients to take their medications and measure their blood pressure, successfully got patients to be more physically active, compared with those who did not use the app.

Another app for secondary prevention, the Korea University Health Monitoring System for Stroke (KUHMS2), reduced blood pressure and glucose levels in patients who used it, compared with those who did not.

Lose It, a weight loss app, is an electronic food journal that shows the values of the macronutrients of foods that the patient consumes, as well as a daily calorie count. The Engaging Everyday Activities app effectively reminds patients who have had transient ischemic attacks about daily activities that can reduce their risk for a recurrent attack.

Movies4Stroke features educational videos about first aid, rehabilitation, how to improve swallowing, and stroke risk factors.

AFib 2gether allows patients to enter their clinical data and calculates their annual stroke risk scores. The information is provided to a health care provider before the next visit to help the patient make an informed decision about anticoagulation therapy.

“We believe that the widespread use of smartphones and apps may improve patient care in every part of the world and in particular in those parts where updated guideline consultation is not readily available. However, in our study we found that apps to implement guidelines by a clinical decision support system are still lacking. Our hope is that these apps will increase in the future,” said Dr. Pilato.
 

No panacea

Commenting on this review for this article, Amy Guzik, MD, associate professor of neurology at Wake Forest University School of Medicine, Winston-Salem, N.C., said that all physicians are looking for opportunities to use technology, especially in stroke, to diagnose and treat patients in the best way they can.

“Figuring out ways to increase efficiency and get the word out to our patients is very important to us and is probably why there are so many apps out there,” said Dr. Guzik.

“There are some ways such apps could be particularly useful. One is in remote hospitals that might not have a neurologist. Helping with the diagnosis and determining what is a bad stroke that needs to go to a higher level of medical care, or whether it is something the local hospital could take care of, would be useful,” said Dr. Guzik.

“Also helping EMS figure out which hospital to go to, or once they are on their way, being able to talk to the neurologist or neurosurgeon or the emergency room doctor and make a plan before the patient gets here, so we can expedite care when the patient arrives, is where apps can be particularly useful,” she added.

There are limitations to what apps can do, however. In the case of stroke, patients may often have important barriers that do not allow them to use apps at all, she said.

“Regardless of how they are being taken care of, a lot of our stroke patients will have problems with technology. A stroke can make texting difficult. Patients may have language difficulties, weakness, or cognitive impairment. They are relying on caregivers. All of this makes it difficult for a tech solution to be the automatic solution, unless things are done in a thoughtful way to make sure that it is appropriate for stroke patients.

“Also, there are a lot of elderly patients who may not necessarily be the most tech savvy and do not have as much digital literacy as younger patients. Another limitation to consider is that some people may not even have easy access to technology. So we must make sure that this is all done with an equity focus,” said Dr. Guzik.

The study was funded by the Associazione Nazionale fra le Imprese Assicuratrici (ANIA). Dr. Pilato and Dr. Guzik reported no relevant financial relationships.

 

 

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

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