Experts offer blueprint for transitioning youth with neurologic conditions

Until now, there was no blueprint for how to effectively transition pediatric patients with neurologic conditions to adult care: Hard science on the topic is almost nonexistent.

“There is not very much data, yet there is a lot of suggestion that if you do it badly things don’t turn out so well,” said Peter Camfield, MD, a child neurologist and professor emeritus at Dalhousie University in Halifax, Nova Scotia, who has written extensively on the topic (Ann Neurol. 2011;69[3]:437-44 and Epilepsy Curr. 2012;12[Suppl. 3]:13-21). He recalled hearing one story of an adolescent girl who came to see a child neurologist every 6 months, always with her parents. “She had some significant learning disabilities and she didn’t finish high school; she dropped out,” he said. “She was sent to an adult neurologist just with a transfer note and to a nephrologist just with a transfer note.”

The patient never visited the nephrologist. The adult neurologist saw her once, “but she said he was kind of rude and that he wouldn’t see her again,” Dr. Camfield said. “She lived with her boyfriend and eventually at about age 24 she was found dead in bed. She hadn’t taken her medications regularly. The presumption is she died from a seizure. If she had been more prepared for adult medical care, she could have engaged better with the adult neurologist, the kidney part of this thing wouldn’t have been let go, and she presumably would be still alive and making her way.”

In an effort to avoid such tragedies and to define the neurologist’s role in transitioning youth with neurologic conditions into adult care, an interdisciplinary team of child neurologists and other experts spent more than 2 years developing a consensus statement, published online July 27 in Neurology (doi: 10.1212/WNL.0000000000002965). Spearheaded by Lawrence W. Brown, MD, director of the pediatric neuropsychiatry program at The Children’s Hospital of Philadelphia, the consensus statement, “The neurologist’s role in supporting transition to adult health care” is endorsed by the Child Neurology Society, the American Academy of Neurology, and the American Academy of Pediatrics.

Despite broad-based efforts over more than a decade to improve transition of care, such as the Consensus Policy Statement on Health Care Transitions for Young Adults With Special Needs, the Clinical Report: Supporting Health Care Transition from Adolescence to Adulthood in the Medical Home, and the Got Transition Center for Health Care Transition Improvement (a federally funded program located at the National Alliance to Advance Adolescent Health), Dr. Brown expressed his belief that neurologists were unlikely to adopt these recommendations “because they were very hard to put in place, to concretize, and to make practical. We also recognized that child neurology was in many ways behind the eight ball compared to other specialties, at least compared to certain disease-oriented areas such as cystic fibrosis, sickle cell disease, congenital heart disease, and rheumatoid arthritis. These conditions already had attempts to show what the expectations were for the kids and for the doctors, and there were some practical solutions out there.” If transition to adult care is going to be successful, he continued, “it’s not just the neurologist acting in a vacuum, but the neurologist working with the youth and his caregivers as well as with his primary care physician and with other specialists.”

Dr. Brown characterized the new consensus statement as an outline of “common principles that all child neurologists should try to respect” based on a review of the best medical literature and best practices. The first of eight principles contained in the statement recommends that the child neurology team start talking early about the concept of transition to the adult health care system with the youth and caregivers, and document that discussion “no later than the youth’s 13th birthday.”

Mary L. Zupanc, MD, one of the experts who helped author the consensus document, underscored the importance of introducing the notion of transition before the youth turns 13 years of age. Otherwise, “you are playing catch-up all the time,” she said. “Families have to get used to the concept of transition because we have long-term relationships with these individuals and their families. They come to think of us as part of their family. When you first bring up the topic of transition they about have a heart attack, because they can’t imagine a life without including you in it.”

The document’s second common principle recommends that the neurology team assess the youth’s self-management skills annually beginning at age 12. According to the authors, self-management of a medical condition “includes a youth’s understanding of his or her condition and any related limitations, knowledge about and responsibility for his or her own care plan and the need to make informed decisions, and the importance of self-advocacy.”

The statement also recommends phased transition planning at least annually beginning when the youth is 13 years of age. Topics to be discussed at such planning sessions range from the youth’s medical condition and current medications to genetic counseling and issues of puberty and sexuality. The validated Transition Readiness Assessment Questionnaire can be used as well (Acad Pediatr. 2014;14[4]:415-22).

Another principle contained in the consensus statement calls for a comprehensive transition plan by the time the youth is 14 years of age, ideally coordinated by the youth’s primary care provider in collaboration with the youth, caregivers, other health care providers, school personnel, vocational professionals, community services providers, and legal services regarding all aspects of health, financial, and legal care. It tasks the child neurology team with three responsibilities toward the comprehensive care plan: “assuring that an appropriate plan exists” and is created in partnership with the youth and family; “identifying the professional(s) with primary responsibility for overseeing and updating the entire transition plan,” and “providing and updating the neurologic component to this plan – including the ‘transfer packet,’ ” which contains important medical and social information.

In 2011, Dr. Zupanc, division chief of pediatric neurology at Children’s Hospital of Orange County in Orange, Calif., created a multidisciplinary clinic for epilepsy patients that includes nurse practitioners, registered nurses, a pharmacist, a dietitian, a social worker, a neuropsychologist, and a child psychiatrist. When Dr. Zupanc addresses the notion of transition with patients and their families for the first time, it’s not uncommon for her to be accompanied by the social worker and the neuropsychologist, “which I find helpful because parents may start to ask questions about guardianship,” she said. “Many of these parents do not even realize that there has to be an appointed guardian at age 18. We usually seek verification of competency via neuropsychometric testing or school evaluations. This information has to go before a judge to decide whether or not the patient is capable of taking care of himself/herself or if there should be an appointed guardian, typically one or both parents.”

Dr. Zupanc goes on to tell patients and their families that transition of care is a process that’s going to occur over the next 6-8 years. “Some of the patients don’t transition at age 18 years, because they are covered by California Children’s Services until age 22 years,” she said. The age of transition may vary from state to state, depending on insurance coverage and other issues. “Parents and patients get used to the idea that the transition isn’t going to happen tomorrow,” she said. “We explain the whole process. We let them know that we will help them. We also mention that we have adult provider colleagues in the community who are very knowledgeable about epilepsy or their child’s genetic syndrome. We partner with these colleagues, many of whom we have identified over time as willing to take our neurologically complex patients. As the transition process proceeds, we develop a transition packet of important medical information and social information. We will personally have conversations with the physician to whom we are transitioning care. Sometimes, our colleagues at University of California, Irvine, come over to our clinic before the final hand-off, so that the adult provider and the pediatric provider can meet together with the parents and patients in the same room. To us, that is the ideal situation. In this way, both the patients and the parents do not feel as if they are being abandoned.”

Dr. Zupanc, professor of pediatrics at the University of California–Irvine School of Medicine, said that a chief barrier to effective transition of care for pediatric patients with complex neurological problems is identifying clinicians who are willing to accept them into their practice. For example, many young patients with intractable epilepsy have significant concomitant cognitive issues and behavioral issues and/or autistic spectrum disorder. “If you look at surveys of adult providers, they feel enormously uncomfortable and uneducated about autistic spectrum disorder. They do not want to touch these young adolescents/adults,” Dr. Zupanc said. “They’re willing to take a piece of their care but not the entire package, which is problematic.”

The way Dr. Camfield sees it, neurologists have a moral obligation to play an active role in transitioning pediatric patients to adult care. “In many ways, it’s the No. 1 issue for tertiary care pediatrics now: What happens to young people in adulthood; what kind of citizens they turn out to be and how we help that to take place,” said Dr. Camfield, who helped write the consensus statement. “It’s no longer just enough to think, ‘as your child gets to be 16, 17, or 18, that’s it. We’re finished. Our job is done.’ That doesn’t make sense to me.”

In the consensus statement, he and his coauthors call for additional research on transition care practices in neurology moving forward. “Possible metrics for assessment include the rate of appointment completion and follow-up in the adult setting, patient and family satisfaction with transition and the new provider, stable or improved neurologic condition, adherence to care plans, decreased emergency utilization, rate of ‘bounce back’ to pediatric providers, and improved quality of life,” they wrote.

The consensus statement was funded in part by Eisai. Dr. Brown and Dr. Zupanc reported having no financial disclosures relevant to the manuscript. Dr. Camfield disclosed that he has received a speakers honorarium from Biocodex. Neurology Reviews, a publication of Frontline Medical Communications, is a member of the President’s Council of the Child Neurology Foundation.

[email protected]

Until now, there was no blueprint for how to effectively transition pediatric patients with neurologic conditions to adult care: Hard science on the topic is almost nonexistent.

“There is not very much data, yet there is a lot of suggestion that if you do it badly things don’t turn out so well,” said Peter Camfield, MD, a child neurologist and professor emeritus at Dalhousie University in Halifax, Nova Scotia, who has written extensively on the topic (Ann Neurol. 2011;69[3]:437-44 and Epilepsy Curr. 2012;12[Suppl. 3]:13-21). He recalled hearing one story of an adolescent girl who came to see a child neurologist every 6 months, always with her parents. “She had some significant learning disabilities and she didn’t finish high school; she dropped out,” he said. “She was sent to an adult neurologist just with a transfer note and to a nephrologist just with a transfer note.”

The patient never visited the nephrologist. The adult neurologist saw her once, “but she said he was kind of rude and that he wouldn’t see her again,” Dr. Camfield said. “She lived with her boyfriend and eventually at about age 24 she was found dead in bed. She hadn’t taken her medications regularly. The presumption is she died from a seizure. If she had been more prepared for adult medical care, she could have engaged better with the adult neurologist, the kidney part of this thing wouldn’t have been let go, and she presumably would be still alive and making her way.”

In an effort to avoid such tragedies and to define the neurologist’s role in transitioning youth with neurologic conditions into adult care, an interdisciplinary team of child neurologists and other experts spent more than 2 years developing a consensus statement, published online July 27 in Neurology (doi: 10.1212/WNL.0000000000002965). Spearheaded by Lawrence W. Brown, MD, director of the pediatric neuropsychiatry program at The Children’s Hospital of Philadelphia, the consensus statement, “The neurologist’s role in supporting transition to adult health care” is endorsed by the Child Neurology Society, the American Academy of Neurology, and the American Academy of Pediatrics.

Despite broad-based efforts over more than a decade to improve transition of care, such as the Consensus Policy Statement on Health Care Transitions for Young Adults With Special Needs, the Clinical Report: Supporting Health Care Transition from Adolescence to Adulthood in the Medical Home, and the Got Transition Center for Health Care Transition Improvement (a federally funded program located at the National Alliance to Advance Adolescent Health), Dr. Brown expressed his belief that neurologists were unlikely to adopt these recommendations “because they were very hard to put in place, to concretize, and to make practical. We also recognized that child neurology was in many ways behind the eight ball compared to other specialties, at least compared to certain disease-oriented areas such as cystic fibrosis, sickle cell disease, congenital heart disease, and rheumatoid arthritis. These conditions already had attempts to show what the expectations were for the kids and for the doctors, and there were some practical solutions out there.” If transition to adult care is going to be successful, he continued, “it’s not just the neurologist acting in a vacuum, but the neurologist working with the youth and his caregivers as well as with his primary care physician and with other specialists.”

Dr. Brown characterized the new consensus statement as an outline of “common principles that all child neurologists should try to respect” based on a review of the best medical literature and best practices. The first of eight principles contained in the statement recommends that the child neurology team start talking early about the concept of transition to the adult health care system with the youth and caregivers, and document that discussion “no later than the youth’s 13th birthday.”

Mary L. Zupanc, MD, one of the experts who helped author the consensus document, underscored the importance of introducing the notion of transition before the youth turns 13 years of age. Otherwise, “you are playing catch-up all the time,” she said. “Families have to get used to the concept of transition because we have long-term relationships with these individuals and their families. They come to think of us as part of their family. When you first bring up the topic of transition they about have a heart attack, because they can’t imagine a life without including you in it.”

The document’s second common principle recommends that the neurology team assess the youth’s self-management skills annually beginning at age 12. According to the authors, self-management of a medical condition “includes a youth’s understanding of his or her condition and any related limitations, knowledge about and responsibility for his or her own care plan and the need to make informed decisions, and the importance of self-advocacy.”

The statement also recommends phased transition planning at least annually beginning when the youth is 13 years of age. Topics to be discussed at such planning sessions range from the youth’s medical condition and current medications to genetic counseling and issues of puberty and sexuality. The validated Transition Readiness Assessment Questionnaire can be used as well (Acad Pediatr. 2014;14[4]:415-22).

Another principle contained in the consensus statement calls for a comprehensive transition plan by the time the youth is 14 years of age, ideally coordinated by the youth’s primary care provider in collaboration with the youth, caregivers, other health care providers, school personnel, vocational professionals, community services providers, and legal services regarding all aspects of health, financial, and legal care. It tasks the child neurology team with three responsibilities toward the comprehensive care plan: “assuring that an appropriate plan exists” and is created in partnership with the youth and family; “identifying the professional(s) with primary responsibility for overseeing and updating the entire transition plan,” and “providing and updating the neurologic component to this plan – including the ‘transfer packet,’ ” which contains important medical and social information.

In 2011, Dr. Zupanc, division chief of pediatric neurology at Children’s Hospital of Orange County in Orange, Calif., created a multidisciplinary clinic for epilepsy patients that includes nurse practitioners, registered nurses, a pharmacist, a dietitian, a social worker, a neuropsychologist, and a child psychiatrist. When Dr. Zupanc addresses the notion of transition with patients and their families for the first time, it’s not uncommon for her to be accompanied by the social worker and the neuropsychologist, “which I find helpful because parents may start to ask questions about guardianship,” she said. “Many of these parents do not even realize that there has to be an appointed guardian at age 18. We usually seek verification of competency via neuropsychometric testing or school evaluations. This information has to go before a judge to decide whether or not the patient is capable of taking care of himself/herself or if there should be an appointed guardian, typically one or both parents.”

Dr. Zupanc goes on to tell patients and their families that transition of care is a process that’s going to occur over the next 6-8 years. “Some of the patients don’t transition at age 18 years, because they are covered by California Children’s Services until age 22 years,” she said. The age of transition may vary from state to state, depending on insurance coverage and other issues. “Parents and patients get used to the idea that the transition isn’t going to happen tomorrow,” she said. “We explain the whole process. We let them know that we will help them. We also mention that we have adult provider colleagues in the community who are very knowledgeable about epilepsy or their child’s genetic syndrome. We partner with these colleagues, many of whom we have identified over time as willing to take our neurologically complex patients. As the transition process proceeds, we develop a transition packet of important medical information and social information. We will personally have conversations with the physician to whom we are transitioning care. Sometimes, our colleagues at University of California, Irvine, come over to our clinic before the final hand-off, so that the adult provider and the pediatric provider can meet together with the parents and patients in the same room. To us, that is the ideal situation. In this way, both the patients and the parents do not feel as if they are being abandoned.”

Dr. Zupanc, professor of pediatrics at the University of California–Irvine School of Medicine, said that a chief barrier to effective transition of care for pediatric patients with complex neurological problems is identifying clinicians who are willing to accept them into their practice. For example, many young patients with intractable epilepsy have significant concomitant cognitive issues and behavioral issues and/or autistic spectrum disorder. “If you look at surveys of adult providers, they feel enormously uncomfortable and uneducated about autistic spectrum disorder. They do not want to touch these young adolescents/adults,” Dr. Zupanc said. “They’re willing to take a piece of their care but not the entire package, which is problematic.”

The way Dr. Camfield sees it, neurologists have a moral obligation to play an active role in transitioning pediatric patients to adult care. “In many ways, it’s the No. 1 issue for tertiary care pediatrics now: What happens to young people in adulthood; what kind of citizens they turn out to be and how we help that to take place,” said Dr. Camfield, who helped write the consensus statement. “It’s no longer just enough to think, ‘as your child gets to be 16, 17, or 18, that’s it. We’re finished. Our job is done.’ That doesn’t make sense to me.”

In the consensus statement, he and his coauthors call for additional research on transition care practices in neurology moving forward. “Possible metrics for assessment include the rate of appointment completion and follow-up in the adult setting, patient and family satisfaction with transition and the new provider, stable or improved neurologic condition, adherence to care plans, decreased emergency utilization, rate of ‘bounce back’ to pediatric providers, and improved quality of life,” they wrote.

The consensus statement was funded in part by Eisai. Dr. Brown and Dr. Zupanc reported having no financial disclosures relevant to the manuscript. Dr. Camfield disclosed that he has received a speakers honorarium from Biocodex. Neurology Reviews, a publication of Frontline Medical Communications, is a member of the President’s Council of the Child Neurology Foundation.

[email protected]

Until now, there was no blueprint for how to effectively transition pediatric patients with neurologic conditions to adult care: Hard science on the topic is almost nonexistent.

“There is not very much data, yet there is a lot of suggestion that if you do it badly things don’t turn out so well,” said Peter Camfield, MD, a child neurologist and professor emeritus at Dalhousie University in Halifax, Nova Scotia, who has written extensively on the topic (Ann Neurol. 2011;69[3]:437-44 and Epilepsy Curr. 2012;12[Suppl. 3]:13-21). He recalled hearing one story of an adolescent girl who came to see a child neurologist every 6 months, always with her parents. “She had some significant learning disabilities and she didn’t finish high school; she dropped out,” he said. “She was sent to an adult neurologist just with a transfer note and to a nephrologist just with a transfer note.”

The patient never visited the nephrologist. The adult neurologist saw her once, “but she said he was kind of rude and that he wouldn’t see her again,” Dr. Camfield said. “She lived with her boyfriend and eventually at about age 24 she was found dead in bed. She hadn’t taken her medications regularly. The presumption is she died from a seizure. If she had been more prepared for adult medical care, she could have engaged better with the adult neurologist, the kidney part of this thing wouldn’t have been let go, and she presumably would be still alive and making her way.”

In an effort to avoid such tragedies and to define the neurologist’s role in transitioning youth with neurologic conditions into adult care, an interdisciplinary team of child neurologists and other experts spent more than 2 years developing a consensus statement, published online July 27 in Neurology (doi: 10.1212/WNL.0000000000002965). Spearheaded by Lawrence W. Brown, MD, director of the pediatric neuropsychiatry program at The Children’s Hospital of Philadelphia, the consensus statement, “The neurologist’s role in supporting transition to adult health care” is endorsed by the Child Neurology Society, the American Academy of Neurology, and the American Academy of Pediatrics.

Despite broad-based efforts over more than a decade to improve transition of care, such as the Consensus Policy Statement on Health Care Transitions for Young Adults With Special Needs, the Clinical Report: Supporting Health Care Transition from Adolescence to Adulthood in the Medical Home, and the Got Transition Center for Health Care Transition Improvement (a federally funded program located at the National Alliance to Advance Adolescent Health), Dr. Brown expressed his belief that neurologists were unlikely to adopt these recommendations “because they were very hard to put in place, to concretize, and to make practical. We also recognized that child neurology was in many ways behind the eight ball compared to other specialties, at least compared to certain disease-oriented areas such as cystic fibrosis, sickle cell disease, congenital heart disease, and rheumatoid arthritis. These conditions already had attempts to show what the expectations were for the kids and for the doctors, and there were some practical solutions out there.” If transition to adult care is going to be successful, he continued, “it’s not just the neurologist acting in a vacuum, but the neurologist working with the youth and his caregivers as well as with his primary care physician and with other specialists.”

Dr. Brown characterized the new consensus statement as an outline of “common principles that all child neurologists should try to respect” based on a review of the best medical literature and best practices. The first of eight principles contained in the statement recommends that the child neurology team start talking early about the concept of transition to the adult health care system with the youth and caregivers, and document that discussion “no later than the youth’s 13th birthday.”

Mary L. Zupanc, MD, one of the experts who helped author the consensus document, underscored the importance of introducing the notion of transition before the youth turns 13 years of age. Otherwise, “you are playing catch-up all the time,” she said. “Families have to get used to the concept of transition because we have long-term relationships with these individuals and their families. They come to think of us as part of their family. When you first bring up the topic of transition they about have a heart attack, because they can’t imagine a life without including you in it.”

The document’s second common principle recommends that the neurology team assess the youth’s self-management skills annually beginning at age 12. According to the authors, self-management of a medical condition “includes a youth’s understanding of his or her condition and any related limitations, knowledge about and responsibility for his or her own care plan and the need to make informed decisions, and the importance of self-advocacy.”

The statement also recommends phased transition planning at least annually beginning when the youth is 13 years of age. Topics to be discussed at such planning sessions range from the youth’s medical condition and current medications to genetic counseling and issues of puberty and sexuality. The validated Transition Readiness Assessment Questionnaire can be used as well (Acad Pediatr. 2014;14[4]:415-22).

Another principle contained in the consensus statement calls for a comprehensive transition plan by the time the youth is 14 years of age, ideally coordinated by the youth’s primary care provider in collaboration with the youth, caregivers, other health care providers, school personnel, vocational professionals, community services providers, and legal services regarding all aspects of health, financial, and legal care. It tasks the child neurology team with three responsibilities toward the comprehensive care plan: “assuring that an appropriate plan exists” and is created in partnership with the youth and family; “identifying the professional(s) with primary responsibility for overseeing and updating the entire transition plan,” and “providing and updating the neurologic component to this plan – including the ‘transfer packet,’ ” which contains important medical and social information.

In 2011, Dr. Zupanc, division chief of pediatric neurology at Children’s Hospital of Orange County in Orange, Calif., created a multidisciplinary clinic for epilepsy patients that includes nurse practitioners, registered nurses, a pharmacist, a dietitian, a social worker, a neuropsychologist, and a child psychiatrist. When Dr. Zupanc addresses the notion of transition with patients and their families for the first time, it’s not uncommon for her to be accompanied by the social worker and the neuropsychologist, “which I find helpful because parents may start to ask questions about guardianship,” she said. “Many of these parents do not even realize that there has to be an appointed guardian at age 18. We usually seek verification of competency via neuropsychometric testing or school evaluations. This information has to go before a judge to decide whether or not the patient is capable of taking care of himself/herself or if there should be an appointed guardian, typically one or both parents.”

Dr. Zupanc goes on to tell patients and their families that transition of care is a process that’s going to occur over the next 6-8 years. “Some of the patients don’t transition at age 18 years, because they are covered by California Children’s Services until age 22 years,” she said. The age of transition may vary from state to state, depending on insurance coverage and other issues. “Parents and patients get used to the idea that the transition isn’t going to happen tomorrow,” she said. “We explain the whole process. We let them know that we will help them. We also mention that we have adult provider colleagues in the community who are very knowledgeable about epilepsy or their child’s genetic syndrome. We partner with these colleagues, many of whom we have identified over time as willing to take our neurologically complex patients. As the transition process proceeds, we develop a transition packet of important medical information and social information. We will personally have conversations with the physician to whom we are transitioning care. Sometimes, our colleagues at University of California, Irvine, come over to our clinic before the final hand-off, so that the adult provider and the pediatric provider can meet together with the parents and patients in the same room. To us, that is the ideal situation. In this way, both the patients and the parents do not feel as if they are being abandoned.”

Dr. Zupanc, professor of pediatrics at the University of California–Irvine School of Medicine, said that a chief barrier to effective transition of care for pediatric patients with complex neurological problems is identifying clinicians who are willing to accept them into their practice. For example, many young patients with intractable epilepsy have significant concomitant cognitive issues and behavioral issues and/or autistic spectrum disorder. “If you look at surveys of adult providers, they feel enormously uncomfortable and uneducated about autistic spectrum disorder. They do not want to touch these young adolescents/adults,” Dr. Zupanc said. “They’re willing to take a piece of their care but not the entire package, which is problematic.”

The way Dr. Camfield sees it, neurologists have a moral obligation to play an active role in transitioning pediatric patients to adult care. “In many ways, it’s the No. 1 issue for tertiary care pediatrics now: What happens to young people in adulthood; what kind of citizens they turn out to be and how we help that to take place,” said Dr. Camfield, who helped write the consensus statement. “It’s no longer just enough to think, ‘as your child gets to be 16, 17, or 18, that’s it. We’re finished. Our job is done.’ That doesn’t make sense to me.”

In the consensus statement, he and his coauthors call for additional research on transition care practices in neurology moving forward. “Possible metrics for assessment include the rate of appointment completion and follow-up in the adult setting, patient and family satisfaction with transition and the new provider, stable or improved neurologic condition, adherence to care plans, decreased emergency utilization, rate of ‘bounce back’ to pediatric providers, and improved quality of life,” they wrote.

The consensus statement was funded in part by Eisai. Dr. Brown and Dr. Zupanc reported having no financial disclosures relevant to the manuscript. Dr. Camfield disclosed that he has received a speakers honorarium from Biocodex. Neurology Reviews, a publication of Frontline Medical Communications, is a member of the President’s Council of the Child Neurology Foundation.

[email protected]