Transition Care: Future Directions in Education, Health Policy, and Outcomes Research

doi:10.1016/j.acap.2013.11.007

Academic Pediatrics

Volume 14, Issue 2, March–April 2014, Pages 120-127

https://doi.org/10.1016/j.acap.2013.11.007 Get rights and content

Abstract

All youth must transition from pediatric to adult-centered medical care. This process is especially difficult for youth with special health care needs. Many youth do not receive the age-appropriate medical care they need and are at risk during this vulnerable time. Previous research has identified barriers that may prevent effective transition, and protocols have been developed to improve the process. Health outcomes related to successful transition have yet to be fully defined.

Health care transition can also be influenced by education of providers, but there are gaps in medical education at the undergraduate, graduate, and postgraduate levels. Current changes in federal health policy allow improved health care coverage, provide some new financial incentives, and test new structures for transitional care, including the evolution of accountable care organizations (ACO). Future work must test how these systems changes will affect quality of care. Finally, transition protocols exist in various medical subspecialties; however, national survey results show no improvement in transition readiness, and there are no consistent measures of what constitutes transition success.

In order to advance the field of transition, research must be done to integrate transition curricula at the undergraduate, graduate, and postgraduate levels; to provide advance financial incentives and pilot the ACO model in centers providing care to youth during transition; to define outcome measures of importance to transition; and to study the effectiveness of current transition tools on improving these outcomes.

Section snippets

Medical Education and Transition

In joint consensus statements, the AAP, AAFP, and ACP have twice set goals that “all physicians who provide primary or subspecialty care to young people with special health care needs 1) understand the rationale for transition from child-oriented to adult-oriented health care; 2) have the knowledge and skills to facilitate that process; and 3) know if, how, and when transfer of care is indicated.”1, 6 Despite the increasing number of YSHCN, there remains inconsistent training in transition

Opportunity to Transform Systems of Care: Health Policy and Transition

It is generally agreed that the triple aim of the US health care system is to improve the experience of care, improve the health of populations, and reduce per-capita costs of health care.²⁷ These same health policy issues are seen with transition.

Among the many challenges to health care transition for YSHCN are administrative barriers (eg, transfer of medical records) and health system barriers (eg, health insurance). Although the percentage of YSHCN who are uninsured has decreased from 11% in

Outcomes Research in Health Care Transition: An Emerging Need

Building on policy changes requires outcomes measures to assess the quality and finances associated with transition and ultimately align them with the triple aim of health care.²⁷ The increasing demand for transition services, particularly for youth with chronic medical conditions, creates a need to conduct rigorous outcomes research in order to foster transition program development and evaluation. The goals of transition care are to adequately prepare youth and caregivers for transfer by

Conclusions and Future Directions

As the number of YSHCN has increased, the need to successfully transition these individuals to adult practices has become more apparent. Position statements by the leading primary care organizations in 2002 and 2011 are a step toward addressing this need. Previous research has described the barriers to transition faced by patients, families, and providers. Clinical programs and processes are also being developed. This foundational work needs to be built on in several areas.

Medical education at

References (60)

D.S. Lotstein et al.
Access to care for youth with special health care needs in the transition to adulthood
J Adolesc Health
(2008)
A. Spearman et al.
A successful combination
J Natl Med Assoc
(2010)
C.L. Betz
Facilitating the transition of adolescents with developmental disabilities: nursing practice issues and care
J Pediatr Nurs
(2007)
S.R. Bloom et al.
Health care transition for youth with special health care needs
J Adolesc Health
(2012)
J.A. Binks et al.
What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida
Arch Phys Med Rehabil
(2007)
P.P. Gilliam et al.
Transition of adolescents with HIV to adult care: characteristics and current practices of the adolescent trials network for HIV/AIDS interventions
J Assoc Nurses AIDS Care
(2011)
P. Scal et al.
Trends in transition from pediatric to adult health care services for young adults with chronic conditions
J Adolesc Health
(1999)
M.J. Park et al.
Health care services and the transition to young adulthood: challenges and opportunities
Acad Pediatr
(2011)
A consensus statement on health care transitions for young adults with special health care needs
Pediatrics
(2002)
J.M. Perrin et al.
The increase of childhood chronic conditions in the United States
JAMA
(2007)

J. Reiss et al.

Health care transition: destinations unknown

Pediatrics

(2002)

D.S. Lotstein et al.

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

Pediatrics

(2005)

W.C. Cooley et al.

Supporting the health care transition from adolescence to adulthood in the medical home

Pediatrics

(2011)

M. Fletcher-Johnston et al.

Healthcare transitions for adolescents with chronic life-threatening conditions using a Delphi method to identify research priorities for clinicians and academics in Canada

Child Care Health Dev

(2011)

US Department of Health and Human Services Health Resources and Services Administration. Recommendations for improving...

J.G. Reiss et al.

Health care transition: youth, family, and provider perspectives

Pediatrics

(2005)

A.A. Rosenberg et al.

Training gaps for pediatric residents planning a career in primary care: a qualitative and quantitative study

J Grad Med Educ

(2011)

H.B. Fox et al.

Adolescent medicine training in pediatric residency programs

Pediatrics

(2010)

Accreditation Council for Graduate Medical Education. Available at: http://www.acgme.org/. Accessed August...

M.J. Okumura et al.

Physician views on barriers to primary care for young adults with childhood-onset chronic disease

Pediatrics

(2010)

M.S. Patel et al.

Residency training in transition of youth with childhood-onset chronic disease

Pediatrics

(2010)

N.G. Peter et al.

Transition from pediatric to adult care: internists’ perspectives

Pediatrics

(2009)

M.J. Okumura et al.

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood

J Gen Intern Med

(2008)

T. Melgar et al.

Training experiences of US combined internal medicine and pediatrics residents

Acad Med

(2006)

R.S. Lawrence et al.

Adolescent Health Services: Missing Opportunities

(2009)

National Center for Health Care Transition. Available at: http://www.gottransition.org/. Accessed July...

A.J. Marelli et al.

Congenital heart disease in the general population: changing prevalence and age distribution

Circulation

(2007)

C.A. Warnes et al.

ACC/AHA 2008 guidelines for the management of adults with congenital heart disease. Executive summary: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines for the Management of Adults With Congenital Heart Disease)

Circulation

(2008)

American Board of Pediatrics. Content outline maintenance of certification examination. Available at:...

American Board of Internal Medicine. Maintenance of certification exam blueprint. Available at:...

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Quality care for adolescents and young adults with chronic illnesses has been under-explored in the United Arab Emirates (UAE) and internationally, especially from patients' perspectives. Most available international studies focused on quality of life and the transition to adulthood rather than service quality.
This research assesses care quality for adolescents with chronic illnesses in the UAE, aiming to understand their perspectives, appraise current practices, and identify service gaps.
A cross-sectional survey employed a validated questionnaire examining 33 essential care components. Participants comprised 576 adolescents and young adults with chronic conditions from five UAE Emirates.
Participant's reports indicated that none of the 33 care elements were received consistently. Most participants (80.6%) reported crucial care aspects were absent, and across most investigated items, 19.4%–46.5% of participants reported receiving the services they were supposed to receive only some or many of the times, indicating significant areas for improvement.
Findings demonstrate significant care quality gaps for UAE's adolescents and young adults with chronic illnesses. These may critically affect their ability to manage their conditions and ensure holistic growth. These insights can guide healthcare enhancements tailored to this demographic.
There is an urgency for enhanced patient-centered care in UAE healthcare, emphasizing clinicians' roles in supporting adolescents with chronic illnesses, especially during transitions. Healthcare managers should prioritize standardized care policies, improved communication, and training that emphasizes consistent patient feedback and transition readiness. Further research into care gaps and tailored interventions within the region's distinct sociocultural setting is essential.
Health care transition for cerebral palsy with intellectual disabilities: A systematic review
2023, Revue Neurologique
Today, most individuals with cerebral palsy are adults who need a paediatric-to-adult health care transition. However, many remain in paediatric care for treatment of adult-onset health issues. Therefore, a systematic review based on the ‘Triple Aim’ framework was performed to determine the status of paediatric-to-adult health care transition for people with cerebral palsy. A comprehensive evaluation of transitional care was proposed for using this framework. It consists of ‘experience of care’, meaning satisfaction with the care, ‘population health’, meaning the well-being of patients, and ‘cost’, meaning cost-effectiveness.
Electronic database (PubMed) searches were performed. The inclusion criteria were original articles published between 1990 and 2020. The search terms used in this study were (‘cerebral palsy’ AND ‘transition to adult health care’) OR (‘cerebral palsy’ AND ‘transition’). The study type had to be epidemiological, case report, case-control, and cross-sectional, but not qualitative. The outcomes of the studies were categorised into ‘care experience’, ‘population health’, and ‘cost’, according to the Triple Aim framework.
Thirteen articles met the abovementioned inclusion criteria. Few studies have examined the effect of the intervention of transition for young adults with cerebral palsy. Participants in some studies had no intellectual disability. Young adults were dissatisfied with the ‘care experience’, ‘population health’, and ‘cost’ and had unmet health needs and inadequate social participation.
Further transition intervention studies with a comprehensive assessment and proactive involvement of individuals are warranted. The presence of an intellectual disability should be considered.
Addressing Health Care Transition Competencies in Nurse Practitioner Education
2023, Journal for Nurse Practitioners
Coordinating health care transition across care settings is a national core competency for nurse practitioner education. Caring for children and youth with special health care needs requires a collaborative approach to transition from a child-centered to an adult-focused care model. Adding this content is challenging, given the gaps in the health care transition literature and inconsistent faculty expertise. This report describes one university’s innovative quality improvement project aimed at developing competency in health care transition for children and youth with special health care needs among nurse practitioner students. The design, implementation, and evaluation of teaching strategies that resulted in significant knowledge gain for students are reported.
Improving Health Care Transitions for Children and Youth With Special Health Care Needs
2022, Academic Pediatrics
Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care.
The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were “What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?” and “How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?”. Based upon these priorities, we describe the current state of transition research and recommendations for future investigation.
Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.
Healthcare transitions for adolescents and adults with 22q11.2 deletion syndrome
2022, The Chromosome 22q11.2 Deletion Syndrome: A Multidisciplinary Approach to Diagnosis and Treatment
Advances in medical care have led to increased life expectancy for youth with special healthcare needs. Thus new standards of care have prioritized healthcare transition (HCT) to optimize care for such complex patients. HCT is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems.” However, HCT poses particular problems to patients with genetic conditions and to their families. It often represents a critical event. Indeed, patients with genetic conditions often have chronic multisystem issues necessitating longitudinal management and an individualized care plan with coordination across many specialties. Patients with 22q11.2 deletion syndrome are particularly fragile from a transitional perspective since developmental/learning challenges and behavioral health differences are common and these can impact the patients’ HCT readiness. In this chapter, we analyze the challenges and the possible solutions for an effective transition program for adolescents and adults with the chromosome 22q11.2 deletion syndrome.
Finding MyVOICE: A Mixed-Methods Examination of Health Outcomes of Young Adults with Chronic Illness Transitioning from Pediatric to Adult Health Care
2021, Journal of Pediatric Health Care
This study examines health use outcomes of young adults with chronic illness following participation in a transition program and identifies variables that impact outcomes.
A sample of 119 ethnically diverse, low-income young adults (mean age = 21.8 years) was interviewed 6 months post-transition. Chi-square tests and logistic regression analyses examined the relationship between variables and outcomes. Responses to open-ended questions provided context to findings.
Primary care and insurance linkage were significantly higher for patients enrolled in a fully-formed clinic than patients enrolled early in the clinic's development. Patients with multiple diagnoses reported significantly more hospitalizations and specialty care engagement. Hospitalizations and possession of medical records differed significantly by subspecialty. Visit number predicted hospitalizations after accounting for subspecialty, but not after accounting for the number of conditions.
This study highlights the impact of disease type and severity on post-transition outcomes following participation in a transition program serving socially and medically complex patients.

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: The authors declare that they have no conflict of interest.

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PerspectivesTransition Care: Future Directions in Education, Health Policy, and Outcomes Research

Abstract

Section snippets

Medical Education and Transition

Opportunity to Transform Systems of Care: Health Policy and Transition

Outcomes Research in Health Care Transition: An Emerging Need

Conclusions and Future Directions

J Adolesc Health

J Natl Med Assoc

J Pediatr Nurs

J Adolesc Health

Arch Phys Med Rehabil

J Assoc Nurses AIDS Care

J Adolesc Health

Acad Pediatr

A consensus statement on health care transitions for young adults with special health care needs

Pediatrics

The increase of childhood chronic conditions in the United States

JAMA

Health care transition: destinations unknown

Pediatrics

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

Pediatrics

Supporting the health care transition from adolescence to adulthood in the medical home

Pediatrics

Healthcare transitions for adolescents with chronic life-threatening conditions using a Delphi method to identify research priorities for clinicians and academics in Canada

Child Care Health Dev

Health care transition: youth, family, and provider perspectives

Pediatrics

Training gaps for pediatric residents planning a career in primary care: a qualitative and quantitative study

J Grad Med Educ

Adolescent medicine training in pediatric residency programs

Pediatrics

Physician views on barriers to primary care for young adults with childhood-onset chronic disease

Pediatrics

Residency training in transition of youth with childhood-onset chronic disease

Pediatrics

Transition from pediatric to adult care: internists’ perspectives

Pediatrics

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood

J Gen Intern Med

Training experiences of US combined internal medicine and pediatrics residents

Acad Med

Adolescent Health Services: Missing Opportunities

Congenital heart disease in the general population: changing prevalence and age distribution

Circulation

Circulation

Perspectives
Transition Care: Future Directions in Education, Health Policy, and Outcomes Research