Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions.
Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions.
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美国中西部城市中心患有镰状细胞病的青少年和年轻人的过渡：障碍、促进者和未来方向的多层次视角。
DOI：
10.1097/mph.0000000000002322
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发表时间：
2022-07-01
期刊：
影响因子：
--
通讯作者：
King AA
中科院分区：
文献类型：
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作者：
Calhoun C;Luo L;Baumann AA;Bauer A;Shen E;McKay V;Hooley C;James A;King AA
镰状细胞病（SCD）是一种遗传性红细胞疾病，主要影响美国的非洲裔美国人。患有SCD（AYA-SCD）的青少年和年轻成人在从儿科向成人护理过渡时面临高发病率和死亡率的风险。这项定性研究的目的是了解与AYA-SCD过渡的最佳实施相关的因素。参与者是从一个大型医院系统和社区招募的。访谈指南包括获得初级和专业护理的主题，与疼痛控制相关的信念和实践，从儿科到成人护理的过渡，以及急诊科（艾德）的患者经历。数据进行编码和分析，使用归纳主题编码方法结合演绎编码方法，使用域的实施研究的综合框架（CFIR）。59名参与者，包括21名来自儿科和成人诊所的AYA-SCD，17名护理人员，9名儿科SCD提供者，6名成人SCD提供者和6名艾德提供者，完成了11个焦点小组和5个半结构化访谈。结果确定了CFIR领域内的多个因素，包括外部环境，内部环境，个人特征和干预特征。成果已纳入过渡框架，为改进地方做法提供信息。我们的研究强调了多层次的障碍和促进AYA-SCD从儿科向成人护理过渡的重要性。未来的研究可以使用实施科学框架来了解当地情况，并确定战略和干预措施的特点，以改善过渡规划。这些努力将最终减少健康差距，确保健康公平。
Sickle cell disease (SCD), an inherited red blood cell disorder, primarily affects African Americans in the United States. Adolescents and young adults with SCD (AYA-SCD) are at risk of high morbidity and mortality when transitioning from pediatric to adult care. The goal of this qualitative study was to understand factors associated with optimal implementation of the AYA-SCD transition. Participants were recruited from a large hospital system and the community. Interview guides included topics on access to primary and specialized care, beliefs and practices related to pain control, transition from pediatric to adult care, and patient experiences in the emergency department (ED). Data were coded and analyzed using an inductive thematic coding approach in combination with a deductive coding approach using domains from the Consolidated Framework for Implementation Research (CFIR). Fifty-nine participants, including twenty-one AYA-SCD from both the pediatric and adult clinics, seventeen caregivers, nine pediatric SCD providers, six adult SCD providers, and six ED providers, completed 11 focus groups and 5 semi-structured interviews. Results identified multiple factors within the domains of CFIR including the outer setting, inner setting, individual characteristics, and intervention characteristics. Results were incorporated into a transition framework to inform local practice improvement. Our study highlights the importance of multi-level barriers and facilitators for AYA-SCD transition from pediatric to adult care. Future studies could use implementation science frameworks to understand local context and identify strategies and intervention characteristics to improve transition programming. These efforts will ultimately reduce health disparities and ensure health equity.