Patient-Provider Interventions to Improve Transition to Adult Care in SCD

描述(由申请人提供)：在过渡到成人医疗系统21-22的10年内，患有镰状细胞病(SCD)的年轻人的死亡率令人震惊，从6%到20%不等。K07奖项的具体目标是：(1)为提供者设计、优化和试点自我管理干预措施(即，基于证据的护理策略，包括动机访谈、行为改变咨询等)。这将加强患者的互动、教育和动力；(1b)为16-24岁的SCD患者(患者过渡到或新过渡到成人护理的关键年龄)设计、优化和试行慢性病自我管理干预措施，以改善健康结果(例如治疗依从性、疼痛干预、疲劳等)；以及(2)设计、完善和推出针对SCD的患者-家长门户网站，该门户网站与当前的电子健康记录、EPIC的MyChart部分集成，并促进患者与提供者和提供者之间的协调，以及3)使候选人准备成为SCD健康服务和实施研究的领导者。这位候选人的计划研究方向是慢性病护理方面的创新，包括改变SCD患者的医疗保健提供系统。候选人的直接职业目标是将自己确立为一名独立的调查员，开发和试验临床支持工具(即患者提供者自我管理干预和基于网络的患者/家长门户网站)，以帮助SCD患者过渡到成人医疗系统。职业发展计划包括4个重点领域的深入指导、正式课程和领导力研讨会：1)临床流行病学知识，以提高对与SCD发病率增加相关的临床因素的了解；2)卫生服务和实施研究技能；3)研究方法和生物统计的先进方法；以及4)负责任的研究进行的培训。辛辛那提儿童基金会为这一奖项提供了一个理想的环境，因为它为健康服务和结果研究提供了强有力的机构支持，国家认可的综合镰刀细胞、临床有效性和健康政策，以及治疗依从性和自我管理中心，先进的电子健康信息系统，以及该机构致力于为过渡到成人护理的SCD患者“改变结果”。

DESCRIPTION (provided by applicant): Mortality rates for young adults with sickle cell disease (SCD) are alarming ranging from 6 to 20 percent within 10 years of transitioning to the adult healthcare system 21-22. The Specific Aims of this K07 award are to: (1a) design, optimize, and pilot a self-management intervention for providers (i.e. evidence-based care strategies including motivational interviewing, behavioral change counseling, etc.) that will enhance patient interactions, education and motivation; (1b) design, optimize and pilot a chronic disease self-management intervention for SCD patients age 16-24 (critical ages when patients are transitioning or newly transitioned to adult care) to improve health outcomes (e.g. treatment adherence, pain interference, fatigue, etc.); and (2) to design, refine, and launch an SCD-specific patient-parent portal that integrates with the current electronic health record, MyChart portion of EPIC, and facilitates patient-provider and provider-provider coordination, and 3) prepare the Candidate to be a leader in SCD health services and implementation research. The Candidate's programmatic line of research is in innovation in chronic disease care including transforming the healthcare delivery system for patients with SCD. The candidates' immediate career goal is to establish herself as an independent investigator developing and piloting clinical support tools (i.e. patient- provider self-management interventions and a web-based patient/parent portal) to aid patients with SCD in the transition to the adult healthcare system. The Career Development Plan includes in depth mentorship, formal coursework, and seminars in leadership in 4 focus areas: 1) knowledge of clinical epidemiology to improve understanding of clinical factors related to increased morbidity in SCD; 2) health services and implementation research skills; 3) advanced methods for research methods and biostatistics; and 4) training in the responsible conduct of research. Cincinnati Children's provides an ideal setting for this award because of the strong institutional support for health services and outcomes research, nationally recognized Comprehensive Sickle Cell, Clinical Effectiveness and Health Policy, and Treatment Adherence and Self-Management Centers, advanced electronic health information systems, and a commitment of the Institution to "change the outcomes" for SCD patients transitioning to adult care.