ArticlePediatric blood & cancer2024
How young adults with sickle cell disease define "being a good patient" in the adult healthcare system.
Article in Pediatric blood & cancer, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
2 citing papers in PubMed.
- Coping Strategies and Social Support for Transition Readiness Among Youth With Sickle Cell Disease.JAMA network open · 2026Article
- Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundYoung adulthood brings new challenges for managing sickle cell disease. There are fewer adult specialists, sickle cell disease morbidities accumulate, and mortality increases. Developmental changes in roles and responsibilities also affect management. This study explores how young adults with sickle cell disease experience their role as a patient.
methodsIn this mixed-methods study at a sickle cell center, young adult participants completed the Sickle Cell Self Efficacy Survey, the Measures of Sickle Cell Stigma, and the Adult Sickle Cell Quality of Life Measurement Short-Forms. Semi-structured interviews on the patient role were conducted, transcribed, and then analyzed using thematic analysis.
resultsTwenty-four participants aged 19-25 years defined expectations of being a "good patient." Five definitional themes emerged: health maintenance, emotion regulation, self-advocacy, honest communication, and empathy for clinicians. Participants identified support from families and clinicians are important facilitators of role fulfillment. DISCUSSION: How young adult patients with sickle cell disease define being a "good patient" has implications for the transition of care for both pediatric and adult medicine practices. This understanding can inform healthcare system designs and programs aimed at supporting patients and families.
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