Department of Medicine and Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Pediatr Blood Cancer. 2024 Feb;71(2):e30786. doi: 10.1002/pbc.30786. Epub 2023 Dec 5.
Young 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.
In 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.
Twenty-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.
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.
青年时期给镰状细胞病的管理带来了新的挑战。成人专家较少，镰状细胞病的发病率增加，死亡率上升。角色和责任的发展变化也会影响管理。本研究探讨了镰状细胞病的年轻患者如何体验自己的患者角色。
在镰状细胞中心进行的这项混合方法研究中，年轻的成年参与者完成了镰状细胞自我效能调查、镰状细胞耻辱感量表和成人镰状细胞生活质量测量短表。对患者角色进行了半结构化访谈，转录后使用主题分析进行分析。
24 名年龄在 19-25 岁的参与者定义了成为“好患者”的期望。出现了五个定义主题：健康维护、情绪调节、自我倡导、诚实沟通和对临床医生的同理心。参与者认为来自家庭和临床医生的支持是实现角色的重要促进因素。
镰状细胞病的年轻成年患者如何定义成为“好患者”，这对儿科和成人医学实践的护理过渡都有影响。这种理解可以为旨在支持患者和家庭的医疗保健系统设计和计划提供信息。
