Teens With Heart Disease Need Tailored Transition Care

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.