Growing Up with Hemophilia: Assessing Teens' Experiences and Needs During Transition to Adult Health Care

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Lynn E Sterling
Joyce Nyhof-Young
Victor S Blanchette
Vicky R Breakey


Adolescent, Hemophilia, Patient education, Qualitative Research, Transition of Care, Self care


Introduction: Adolescents with hemophilia have heightened educational needs as they become more independent and transition from pediatric to adult care. The keys to supporting transition are i) providing effective patient education and ii) supporting the development of self-management skills. To develop successful transition initiatives, it is imperative to consider adolescents’ perceived needs.

Objective: To examine the needs of adolescents with hemophilia and describe their perceptions surrounding transition of care.

Methods: Qualitative, semi-structured interviews with a purposive sample of adolescents addressed subjects’ experiences with hemophilia and views about transition. The interviews were audio-recorded and transcribed verbatim. Descriptive themes were identified through constant comparative analysis by three independent reviewers.

Results: Eleven adolescents were interviewed and data saturation was reached in the areas of inquiry. Important themes surrounding the adolescent hemophilia experience included the challenges of sharing one’s diagnosis with others, raising awareness, and sources of support. Some participants had concerns about transition to adult care, but many also recognized some associated benefits. All participants were interested in enhancing their hemophilia-related knowledge and felt that support is important prior to transition.

Conclusions: Teens with hemophilia contribute important insights into their experiences. They perceive variable preparedness for transition. Adolescents’ concerns should be considered during the development of education and self-management programs aiming to foster independence prior to transition of care.