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Understanding barriers to transition from pediatric to adult care among young adults with sickle cell disease to

Adrienne S Viola1, Kristine Levonyan-Radoloff1, Richard Drachtman1

  • 1Rutgers Cancer Institute of New Jersey.

Clinical Practice in Pediatric Psychology
|January 26, 2026
PubMed

Insights

Young adults with sickle cell disease need better support during care transitions. A mentoring program involving medical students can improve self-advocacy and provider communication, enhancing health maintenance.

Area of Science:

  • Hematology
  • Adolescent and Young Adult Medicine
  • Health Services Research

Background:

  • Sickle cell disease (SCD) necessitates lifelong comprehensive care, including appointments, medications, and health maintenance.
  • Transitioning from pediatric to adult care poses risks for SCD patients, potentially leading to significant health complications.
  • The transition period is a critical juncture for young adults with SCD, requiring targeted interventions to ensure continuity of care.

Purpose of the Study:

  • To identify key targets for a mentoring intervention aimed at improving transition outcomes for young adults with sickle cell disease.
  • To explore patient perspectives on essential components for a successful transition from pediatric to adult healthcare settings.
  • To inform the development of a supportive program addressing the unique needs of SCD patients during care transitions.

Main Methods:

  • Semi-structured interviews were conducted with 20 young adults (ages 18-30) with SCD, encompassing those preparing for and recently transitioned to adult care.
  • Interviews were analyzed using template thematic analysis, guided by the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) framework.
  • The SMART framework provided a structured approach to identify recurring themes related to the transition process.

Main Results:

  • Interview themes aligned with the SMART framework, highlighting self-advocacy, provider communication, and disease knowledge as crucial intervention targets.
  • Participants expressed openness to mentorship from medical students, viewing it as a valuable resource for navigating their healthcare.
  • Patients perceived the mentoring relationship as a dual opportunity for personal support and for educating future healthcare professionals.

Conclusions:

  • The SMART framework and insights from patient interviews effectively guided the design of a transition mentor program for SCD patients.
  • The developed program aims to address identified patient needs and enhance the transition experience.
  • Future research will focus on evaluating the feasibility and impact of this novel transition mentoring program.
Abstract

Keywords:
adolescent and young adultneeds assessmentqualitative methodssickle cell diseasetransition

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