Transition Planning Among US Youth With and Without Special Health Care Needs

Lebrun‐Harris, Lydie A.; McManus, Margaret A.; Ilango, Samhita M.; Cyr, Mallory; McLellan, Sarah Beth; Mann, Marie Y.; White, Patience H.

doi:10.1542/peds.2018-0194

Cited by 133 publications

(73 citation statements)

References 42 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Our findings support recommendations for formal pediatric‐to‐adult transition programs in adolescents with special health care needs and opportunities to tailor transition services for adolescents requiring HMV. Recent research identifies only 17% of adolescents with special health care needs receive recommended transition supports including early discussion regarding the shift to an adult provider and development of health communication skills 26 . Adolescents with chronic conditions, developmental delay, and cognitive disability demonstrate lower transition readiness scores 27 .…”

Section: Discussionmentioning

confidence: 99%

A transition program to adult health services for teenagers receiving long‐term home mechanical ventilation: A longitudinal qualitative study

Dale

Carbone

Amin

et al. 2020

Pediatric Pulmonology

View full text Add to dashboard Cite

Objective Adolescents receiving long‐term home mechanical ventilation (HMV) who survive into adulthood must transition to adult health care services. Lack of transition readiness is reported to result in poor health outcomes. The objective of this study is to explore longitudinally the pediatric‐to‐adult health care transition experience involving a transition program for adolescents receiving HMV including transition readiness, barriers, facilitators, and modifiable features. Design A prospective qualitative longitudinal interview study of adolescent and family caregiver dyads recruited through a pediatric‐to‐adult HMV transition program jointly established by two collaborating health centers: The Hospital for Sick Children and West Park Healthcare Centre in Toronto, Canada. Eligible dyads were interviewed at three time points: pretransition, transition, and 12‐months posttransition. Interviews were transcribed verbatim and analyzed using directed content analysis methods. Results Ventilator‐assisted adolescents (VAAs) and caregiver participants perceived a lack of transition readiness in their ability to manage health communication and coordination across multiple adult providers. Transition facilitators included early transition discussion, opportunities for VAAs to speak directly with HMV providers during appointments, receipt of print informational materials regarding adult services, and a joint pediatric‐adult team handover meeting. Modifiable transition barriers included lack of other specialist referrals, insufficient information about adult homecare service funding, and limited involvement of family doctors. Unresolved transition barriers resulted in perceptions of service fragmentation. Conclusions Although the pediatric‐to‐adult HMV transition program conferred benefits service fragmentation was perceived. Transition barriers may be overcome through early planning and staged transition with all specialists, community providers, and the family and adolescent working in collaboration.

show abstract

Section: Discussionmentioning

confidence: 99%

A transition program to adult health services for teenagers receiving long‐term home mechanical ventilation: A longitudinal qualitative study

Dale

Carbone

Amin

et al. 2020

Pediatric Pulmonology

View full text Add to dashboard Cite

show abstract

“…17,18 Lack of transition planning support is a challenge for both youth with special health care needs and those without, but children with special health care needs are at a higher risk for adverse outcomes from gaps in transition care. 10,14,15,23 Failure to plan or inadequate transition planning may also result in young adults with chronic illness such as cerebral palsy or congenital heart disease to continue seeking care in pediatric facilities, which can have financial implications for these institutions. 24,25…”

Section: Transition Versus Transfermentioning

confidence: 99%

“…14 Planning for health care transitions should be standard for all adolescents and young adults regardless of their health care needs. 23,26 Pediatric providers are typically not prepared to assist with concerns considered to be adult in nature, such as employment and reproductive issues, which are better addressed by adult clinicians. 7,16,27 Depending upon disease severity and complexity, children with special health care needs often rely heavily on their parents and caregivers to provide and assist with their medical care at home.…”

Section: Rationale For Transitionmentioning

confidence: 99%

Transition From Pediatric to Adult Care for Young Adults With Chronic Respiratory Disease

Willis

2020

Respir Care

View full text Add to dashboard Cite

Advances in medicine and technology have led to improved survival rates of children with chronic respiratory disease such as cystic fibrosis, neuromuscular disease, and ventilator dependence. Survival into adulthood has created the need for adult specialists for conditions originating in childhood. Transition from pediatric to adult health care is a process that requires advanced planning and preparation and is not a one-time transfer event. Transition should be standard practice, but many children with special health care do not experience successful transition outcomes. Barriers to successful transition include lack of a standardized process, inadequate planning, and poor communication. Adverse outcomes have occurred in cases of abrupt or haphazard transfers. A successful transition process includes early introduction and ongoing discussion that engages the adolescent to plan and prepare for the eventual transfer of care. Care responsibilities should be gradually shifted from the parent to the adolescent in a manner appropriate for the adolescent's age and developmental status. Good communication and collaboration between pediatric and adult care teams is crucial to ensure a smooth transfer of care. Incorporating the 6 core elements of transition can be helpful in developing a successful transition program. This narrative review summarizes the literature for health care transition from pediatric to adult care including the rationale, barriers, factors associated with successful transition, and special considerations. The intent of this review is to increase clinician awareness of health care transitions and the components necessary for an effective transfer of young adults with chronic respiratory disease. Understanding the transition process is an important consideration for both pediatric and adult clinicians, including respiratory therapists.

show abstract

“…As HCT processes and programs have been developed, the growing literature base has focused on assessment, processes, patient and provider experiences, and outcomes [ 4 , 5 ]. Despite these and other efforts to improve HCT over the past decade, national surveys of parents and youth with chronic health conditions have repeatedly shown that HCT planning is often lacking [ 6 – 8 ]. Deficiencies in HCT processes are likely to have greatest impact on health outcomes in populations with progressive disease.…”

Section: Introductionmentioning

confidence: 99%

Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities

Lanzkron

Sawicki

Hassell³

et al. 2018

J. Clin. Trans. Sci.

View full text Add to dashboard Cite

IntroductionA growing population of adults living with severe, chronic childhood-onset health conditions has created a need for specialized health care delivered by providers who have expertise both in adult medicine and in those conditions. Optimal care of these patients requires systematic approaches to healthcare transition (HCT). Guidelines for HCT exist, but gaps in care occur, and there are limited data on outcomes of HCT processes.MethodsThe Single Disease Workgroup of the Lifespan Domain Task Force of the National Center for Advancing Translational Sciences Clinical and Translational Science Award programs convened a group to review the current state of HCT and to identify gaps in research and practice. Using cystic fibrosis and sickle cell disease as models, key themes were developed. A literature search identified general and disease-specific articles. We summarized key findings.ResultsWe identified literature characterizing patient, parent and healthcare provider perspectives, recommendations for transition care, and barriers to effective transition.ConclusionsWith increased survival of patients with severe childhood onset diseases, ongoing study of effective transition practices is essential as survival increases for severe childhood onset diseases. We propose pragmatic methods to enhance transition research to improve health and key outcomes.

show abstract

Transition Planning Among US Youth With and Without Special Health Care Needs

Cited by 133 publications

References 42 publications

A transition program to adult health services for teenagers receiving long‐term home mechanical ventilation: A longitudinal qualitative study

A transition program to adult health services for teenagers receiving long‐term home mechanical ventilation: A longitudinal qualitative study

Transition From Pediatric to Adult Care for Young Adults With Chronic Respiratory Disease

Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities

Contact Info

Product

Resources

About