ArticleJournal of clinical lipidology
Transitioning from pediatric to adult health care with familial hypercholesterolemia: Listening to young adult and parent voices.
Article in Journal of clinical lipidology. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Who cites it
17 citing papers in PubMed, 26 citations in OpenAlex.
- Transition of care from childhood/adolescence to adulthood in familial hypercholesterolemia.Journal of pediatric endocrinology & metabolism : JPEM · 2025Review
- Cardiovascular Health in the Transition From Adolescence to Emerging Adulthood: A Scientific Statement From the American Heart Association.Journal of the American Heart Association · 2025Review
- Life Course Approach for Managing Familial Hypercholesterolemia.Journal of the American Heart Association · 2025Review
- Transitioning Adolescents and Young Adults with Lipid Disorders to Adult Health Care.Current atherosclerosis reports · 2024Review
- Psychological Impact of Presymptomatic X-Linked ALD Diagnosis and Surveillance: A Small Qualitative Study of Patient and Parent Experiences.International journal of neonatal screening · 2024Article
- Caregivers' Perspective on Successful Health Care Transition Outcomes for Adolescents and Young Adults With Special Health Care Needs.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2024Article
- Labor and Delivery Clinician Perspectives on Impact of Traumatic Clinical Experiences and Need for Systemic Supports.Maternal and child health journal · 2023Article
- Transition readiness in middle and older adolescents with asthma and associated factors: a descriptive study.The Journal of asthma : official journal of the Association for the Care of Asthma · 2023Article
- Parental Involvement in the Transition from Paediatric to Adult Care for Youth with Chronic Illness: A Scoping Review of the North American Literature.International journal of pediatrics · 2023Article
- Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.Patient preference and adherence · 2023Article
- Parent-youth interactions: Transitioning to toileting self-management in spina bifida patients.Health care transitions · 2023Article
- Familial hypercholesterolaemia: evolving knowledge for designing adaptive models of care.Nature reviews. Cardiology · 2020Review
- Medicaid and CHIP Child Health Beneficiary Incentives: Program Landscape and Stakeholder Insights.Pediatrics · 2019Review
- Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis.BMJ open · 2019Review
- How do the experiences and beliefs of adults and children with heterozygous familial hypercholesterolaemia influence their adherence to treatment? A systematic review of qualitative evidence protocol.Systematic reviews · 2018Article
- Perspectives on addressing bipolar disorder in the obstetric setting.General hospital psychiatryArticle
- Perspectives on barriers and facilitators to mental health support after a traumatic birth among a sample of primarily White and privately insured patients.General hospital psychiatryArticle
Corrections and comments
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Authors and funding
7 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundYoung adults with familial hypercholesterolemia (FH) are at a critical period for establishing behaviors to promote future cardiovascular health.
objectiveTo 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.
methodsSemistructured, 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.
resultsRespondents 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.
conclusionYoung 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.