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

Samantha K. Sliwinski, Holly Gooding, Sarah de Ferranti, Thomas I. Mackie, Supriya Shah, Tully Saunders, Laurel K. Leslie

Research output: Contribution to journalArticle

7 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)147-159
Number of pages13
JournalJournal of Clinical Lipidology
Issue number1
StatePublished - Jan 1 2017

All Science Journal Classification (ASJC) codes

  • Internal Medicine
  • Endocrinology, Diabetes and Metabolism
  • Nutrition and Dietetics
  • Cardiology and Cardiovascular Medicine


  • Cardiovascular health
  • Chronic disorder
  • Familial hypercholesterolemia
  • Transition to adult care
  • Young adult

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