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CME / ABIM MOC / CE

Congenital Heart Disease Transitional Care: Latest Guidance

  • Authors: News Author: Megan Brooks; CME Author: Laurie Barclay, MD
  • CME / ABIM MOC / CE Released: 4/22/2022
  • Valid for credit through: 4/22/2023
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  • Credits Available

    Physicians - maximum of 0.25 AMA PRA Category 1 Credit(s)™

    ABIM Diplomates - maximum of 0.25 ABIM MOC points

    Nurses - 0.25 ANCC Contact Hour(s) (0 contact hours are in the area of pharmacology)

    Pharmacists - 0.25 Knowledge-based ACPE (0.025 CEUs)

    Physician Assistant - 0.25 AAPA hour(s) of Category I credit

    IPCE - 0.25 Interprofessional Continuing Education (IPCE) credit

    You Are Eligible For

    • Letter of Completion
    • ABIM MOC points

Target Audience and Goal Statement

This activity is intended for cardiologists, pediatricians, critical care clinicians, family medicine and primary care clinicians, nurses, pharmacists, physician assistants, and other members of the health care team who care for patients with congenital heart disease.

The goal of this activity is that learners will be better able to describe recent evidence regarding the transition to adult care for adolescents with congenital heart disease and considerations for the development of congenital heart disease transition programs, based on an updated scientific statement from the American Heart Association.

Upon completion of this activity, participants will:

  • Assess recent evidence regarding transition to adult care for adolescents with congenital heart disease, based on an updated American Heart Association scientific statement
  • Evaluate the considerations for the development of congenital heart disease transition programs, based on an updated American Heart Association scientific statement
  • Outline implications for the healthcare team


Disclosures

Medscape, LLC requires every individual in a position to control educational content to disclose all financial relationships with ineligible companies that have occurred within the past 24 months. Ineligible companies are organizations whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.

All relevant financial relationships for anyone with the ability to control the content of this educational activity are listed below and have been mitigated according to Medscape policies. Others involved in the planning of this activity have no relevant financial relationships.


News Author

  • Megan Brooks

    Freelance writer, Medscape

    Disclosures

    Disclosure: Megan Brooks has disclosed no relevant financial relationships.

CME Author

  • Laurie Barclay, MD

    Freelance writer and reviewer
    Medscape, LLC

    Disclosures

    Disclosure: Laurie Barclay, MD, has disclosed the following relevant financial relationships:
    Stocks, stock options, or bonds: AbbVie (former)

Editor/Nurse Planner

  • Stephanie Corder, ND, RN, CHCP

    Associate Director, Accreditation and Compliance
    Medscape, LLC

    Disclosures

    Disclosure: Stephanie Corder, ND, RN, CHCP, has disclosed no relevant financial relationships.

Compliance Reviewer

  • Amanda Jett, PharmD, BCACP

    Associate Director, Accreditation and Compliance
    Medscape, LLC

    Disclosures

    Disclosure: Amanda Jett, PharmD, BCACP, has disclosed no relevant financial relationships.

PA Planner

  • Jennifer Hakkarainen, PA-C

    Medical Education Director, Medscape, LLC

    Disclosures

    Disclosure: Jennifer Hakkarainen, PA-C, has disclosed no relevant financial relationships.


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In support of improving patient care, Medscape, LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

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CME / ABIM MOC / CE

Congenital Heart Disease Transitional Care: Latest Guidance

Authors: News Author: Megan Brooks; CME Author: Laurie Barclay, MDFaculty and Disclosures

CME / ABIM MOC / CE Released: 4/22/2022

Valid for credit through: 4/22/2023

processing....

Clinical Context

Most people who are born with a congenital heart defect (CHD), including complex heart conditions, now survive into adulthood, and the smooth transition from pediatric to adult-centered care is key to their health, survival, and quality of life, the American Heart Association (AHA) says in a new scientific statement. Adolescents and young adults who are ready to transition from pediatric to adult care are estimated to make up 15% to 20% of the overall population with CHD in the US. Furthermore, an estimated 1.4 million or more adults with CHD live in the US, yet fewer than 30% are currently in subspecialty care. Clarifying potential barriers to successful health care transition is essential for uninterrupted health care from adolescence through adulthood.

Study Synopsis and Perspective

"As physicians caring for adults with congenital heart disease, we see the consequences of patients who fall out of care and then return to care when they feel sick," Anitha S. John, MD, PhD, chair of the scientific statement writing group, says in a news release.

"At that point, they have been without medical care for a period of time, and when they return to the healthcare system, they may have developed complications that could have been avoided had they remained in care," adds Dr John, medical director of the Washington Adult Congenital Heart Program at Children's National Hospital, Washington, DC.

The statement was published online March 17 in the Journal of the American Heart Association.

The AHA first issued a scientific statement on best practices for managing the transition to adult-centered care for CHD in 2011.

Since then, efforts have been made to include transition programming as part of pediatric CHD programs, but there remain "significant challenges" to successful implementation, the writing group notes.

The updated statement summarizes the latest research regarding specific considerations in designing and creating successful transition programs for young people with CHD. It emphasizes the need for an interdisciplinary team approach to ensure a successful transition process.

The statement updates 3 sections relevant to a seamless transition of care:

  • Factors unique to vulnerable populations, including the contributions of social determinants of health, psychosocial well-being, and neurocognitive status of the individuals with CHD.
  • The additional costs and potential health complications of inadequate transition to adult care, as well as increased use of emergency medical services and the impact on quality of life.
  • Considerations and suggestions for designing transition programs that address ways to increase adolescent participation in face-to-face and online communication with health professionals, adopting a family-centered approach and learning from successful program models.

The statement calls on healthcare professionals to gain a broader understanding of the transition needs and barriers to successful transition and help coordinate the integration into adult-centered care for both primary and specialty care.

The writing group acknowledges that "significant knowledge gaps" remain and calls for future research in several areas, including the ideal timing for transition and identifying barriers to successful transition, especially for underserved populations.

The consequences of poor healthcare transition are "great," and collecting information on outcomes through organized, multifaceted, collaborative approaches to transition is key to improving the lifelong care of individuals with CHD, they say.

"It is important to involve individuals and families in research. Collaboration during this transition is critical to improving the lifelong care of people with congenital heart disease," Dr John adds in the news release.

This scientific statement was prepared by the volunteer writing group on behalf of the AHA's Adults With Congenital Heart Disease Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young and the Council on Clinical Cardiology; the Council on Cardiovascular and Stroke Nursing; the Council on Arteriosclerosis, Thrombosis, and Vascular Biology; and the Stroke Council.

J Am Heart Assoc. Published online March 17, 2022.[1]

Study Highlights

  • To ensure ongoing medical and psychosocial success, transfer of care requires developing health care transition skills and gaining independence in managing one's own health care.
  • Examples of self-management skills relevant to chronic disease management include making appointments, taking medications independent of parent/guardian, refilling prescriptions, attending part of appointments alone, and calling the provider about health changes.
  • Examples of self-advocacy skills relevant to chronic disease management include keeping an appointment calendar, preparing questions before the appointment, ensuring that the questions are answered, answering the clinician's questions, and using community support services as needed.
  • A recent meta-analysis showed that a key intervention for patients with CHD would be routine social determinants of health (SDOH) screening, with appropriate services referrals for those who screen positive.
  • For example, systemic inequities leading to racial and ethnic disparities, economic instability, and limited education and employment opportunities all contribute to lapses in CHD care, suboptimal longer-term outcomes and unnecessary morbidity and mortality.
  • Impaired psychosocial functioning and neurocognitive deficits, which are common in patients with CHD, may be barriers to successful transition.
  • During transition to adulthood, adolescents with CHD may experience psychosocial challenges regarding identity formation, personality development, resilience, peer support, and psychological distress.
  • The statement updates 3 sections relevant to transition programming.
    • First, specific factors to be considered include SDOH, psychosocial well-being, and neurocognitive status.
    • Second, costs of inadequate transition include public health burden and impairment in individual quality of life. Gaps in recommended care cause higher mortality and morbidity.
    • Third, considerations and suggestions for transition program design include communication platforms, a family-centered approach, and individual models.
  • Various models of transitional care include nurse-led, clinic-based education (linked to improvements in patient knowledge), multidisciplinary transition clinic (linked to higher-follow-up rate and quality of life), and a comprehensive transition program including multiple visits with a transition coordinator, an information day for adolescents, and parental guidance, designed to empower adolescents using intervention mapping.
  • During the transition period, emergency department use and decentralization of care increase.
  • Uninterrupted health care can potentially minimize hospitalizations and promote physical well-being, resulting in better physical and psychosocial quality of life.
  • To improve lifelong care of individuals with CHD, organized, multifaceted, collaborative approaches to transition are needed to collect outcomes data.
  • A recent literature review showed benefits of transition interventions on psychosocial outcomes including health-related quality of life, disease-related self-management, and transition readiness.
  • Understanding the concepts behind transition and transfer and implementing solutions are essential to providing optimal care to adolescents and young adults with CHD.
  • This requires broad understanding of patient, health care professional, and system barriers to reduce worsening health disparities for low socioeconomic status and racial and ethnic populations.
  • Programs must also develop proactive, consistent, and sustainable approaches to transition, including educational curricula, regular reinforcement of concepts, patient and family engagement, and periodic evaluations of transition.
  • Additional prospective research is needed to identify the most effective programs and components.
  • A coordinated and comprehensive effort will allow patients with CHD to maintain congenital heart care with a smooth transition and transfer to adult-oriented care.
  • Key principles and guidelines for CHD-specific health care transition programs include:
    • Emphasize patient self-management, self-advocacy, and engagement and educate caregivers to encourage patients to assume a primary ownership role with some shared decision-making.
    • Guide patients in building medical knowledge and care coordination skills and caregivers in assuming a more supportive role, emphasizing the rationale for transition while acknowledging their fears and concerns.
    • Acknowledge individual CHD subtypes and accompanying cardiac, noncardiac, and lifestyle (exercise) complexities.
    • Understand patient diversity in neurocognitive development, intellectual disabilities, mental health conditions, and comorbidities to provide patient and family psychosocial and educational support from the medical care team.
    • Emphasize lifelong care, including identifying or knowing how to identify an adult CHD specialist before transfer of care.
    • Advocate for health equity in transition by recognizing the role of health literacy and SDOH for all families, particularly those with lower socioeconomic status.
    • Educate members of pediatric and adult CHD teams to address transition needs and provide transition education and skills to all patients with CHD, particularly those with neurodevelopmental deficits.

Clinical Implications

  • To ensure ongoing medical and psychosocial success, transfer of care requires developing health care transition skills and gaining independence in managing one's own health care.
  • Programs must also develop proactive, consistent, and sustainable approaches to transition, including educational curricula, regular reinforcement of concepts, patient and family engagement, and periodic evaluations of transition.
  • Implications for the Health Care Team: There are substantial consequences of poor health care transition; gaps in recommended care cause higher mortality and morbidity. When caring for patients with CHD, team members should proactively screen for social determinants of health and identify strategies to promote seamless coordination of care across the lifespan.

 

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