Dataset Information

Transitioning from pediatric to adult health care with familial hypercholesterolemia: Listening to young adult and parent voices.

ABSTRACT: BACKGROUND:Young adults with familial hypercholesterolemia (FH) are at a critical period for establishing behaviors to promote future cardiovascular health. OBJECTIVE:To examine challenges transitioning to adult care for young adults with FH and parents of FH-affected young adults in the context of 2 developmental tasks, transitioning from childhood to early adulthood and assuming responsibility for self-management of a chronic disorder. METHODS:Semistructured, qualitative interviews were conducted with 12 young adults with FH and 12 parents of affected young adults from a pediatric subspecialty preventive cardiology program in a northeastern academic medical center. Analyses were conducted using a modified grounded theory framework. RESULTS:Respondents identified 5 challenges: (1) recognizing oneself as a decision maker, (2) navigating emerging independence, (3) prioritizing treatment for a chronic disorder with limited signs and symptoms, (4) managing social implications of FH, and (5) finding credible resources for guidance. Both young adults and parents proposed similar recommendations for addressing these challenges, including the need for family and peer involvement to establish and maintain diet and exercise routines and to provide medication reminders. Systems-level recommendations included early engagement of adolescents in shared decision-making with health care team; providing credible, educational resources regarding FH; and using blood tests to track treatment efficacy. CONCLUSION:Young adults with FH transitioning to adult care may benefit from explicit interventions to address challenges to establishing healthy lifestyle behaviors and medication adherence as they move toward being responsible for their medical care. Further research should explore the efficacy of recommended interventions.

SUBMITTER: Sliwinski SK

PROVIDER: S-EPMC6547361 | biostudies-literature | 2017 Jan - Feb

REPOSITORIES: biostudies-literature

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Transitioning from pediatric to adult health care with familial hypercholesterolemia: Listening to young adult and parent voices.

Sliwinski Samantha K SK Gooding Holly H de Ferranti Sarah S Mackie Thomas I TI Shah Supriya S Saunders Tully T Leslie Laurel K LK

Journal of clinical lipidology 20161109 1

<h4>Background</h4>Young adults with familial hypercholesterolemia (FH) are at a critical period for establishing behaviors to promote future cardiovascular health.<h4>Objective</h4>To examine challenges transitioning to adult care for young adults with FH and parents of FH-affected young adults in the context of 2 developmental tasks, transitioning from childhood to early adulthood and assuming responsibility for self-management of a chronic disorder.<h4>Methods</h4>Semistructured, qualitative ...[more]

PMID: 28391881

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Project description:BACKGROUND:Hospital charges and lengths of stay may be greater when adults with chronic conditions are admitted to children's hospitals. Despite multiple efforts to improve pediatric-adult healthcare transitions, little guidance exists for transitioning inpatient care. OBJECTIVE:This study sought to characterize pediatricadult inpatient care transitions across general pediatric services at US children's hospitals. DESIGN, SETTING AND PARTICIPANTS:National survey of inpatient general pediatric service leaders at US children's hospitals from January 2016 to July 2016. MEASUREMENTS:Questionnaires assessed institutional characteristics, presence of inpatient transition initiatives (having specific process and/or leader), and 22 inpatient transition activities. Scales of highly correlated activities were created using exploratory factor analysis. Logistic regression identified associations between institutional characteristics, transition activities, and presence of an inpatient transition initiative. RESULTS:Ninety-six of 195 children's hospitals responded (49.2% response rate). Transition initiatives were present at 38% of children's hospitals, more often when there were dual-trained internal medicine-pediatrics providers or outpatient transition processes. Specific activities were infrequent and varied widely from 2.1% (systems to track youth in transition) to 40.5% (addressing potential insurance problems). Institutions with initiatives more often consistently performed the majority of activities, including using checklists and creating patient-centered transition care plans. Of remaining activities, half involved transition planning, the essential step between readiness and transfer. CONCLUSIONS:Relatively few inpatient general pediatric services at US children's hospitals have leaders or dedicated processes to shepherd transitions to adultoriented inpatient care. Across institutions, there is a wide variability in performance of activities to facilitate this transition. Feasible process and outcome measures are needed.

Project description:BackgroundTransitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth.MethodsA total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis.ResultsFive distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the "common thread" (continuous accessible care); (2) caring for the "whole patient" (comprehensive care); (3) "knowing families" (family-partnered care); (4) "empowering" adolescents and young adults to develop "personal responsibility" (developmentally-appropriate care); and (5) "quarterbacking" care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care).ConclusionsInput from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.

Dataset Information

Transitioning from pediatric to adult health care with familial hypercholesterolemia: Listening to young adult and parent voices.

Publications

Transitioning from pediatric to adult health care with familial hypercholesterolemia: Listening to young adult and parent voices.

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