Implementation of Medical Homes for Evidence Based Care of Adolescents and Adults with Sickle Cell Disease

建立医疗之家，为患有镰状细胞病的青少年和成人提供循证护理

• 批准号: 10005740
• 负责人: Robert William Gibson
• 金额: $ 2.75万
• 依托单位: AUGUSTA UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-05 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10005740
• 关键词: Adherence; Adolescent; Adoption; Adult; Behavior Therapy; Behavioral; Blood Transfusion; Caring; Child; Chronic; Disease Management; Disease Progression; Dose; Double-Blind Method; FDA approved; Fetal Hemoglobin; Frequencies; Genetic; Goals; Habits; Health; Health Benefit; Health Care Costs; Health Promotion; Hematological Disease; Home environment; Hospitalization; Intervention; Intervention Studies; Life; Link; Literature; Medical; Medical center; Modeling; Morbidity - disease rate; Neighborhoods; Outcome; Participant; Patients; Persons; Pharmaceutical Preparations; Randomized Controlled Trials; Sickle Cell Anemia; Therapeutic Agents; Time; acute chest syndrome; base; behavior change; burden of illness; clinical practice; cost estimate; empowered; evidence base; experience; hydroxyurea; improved; medication compliance; mortality; parent grant; patient oriented; person centered; protective factors; vaso-occlusive crisis

Problem. Suboptimal adherence to medications and treatment is associated with increased morbidity and mortality, with associated health care costs estimated between 100 - 300 billion dollars, nationally. Adherence to hydroxyurea (HU) is a problem for persons with sickle cell disease (SCD). A landmark double-blind randomized, controlled trial demonstrated the benefits of HU use by adult patients with SCD. Participants taking HU experienced a reduction in the frequency of vaso-occlusive crises, hospitalizations, and the need for blood transfusions. HU is a fetal hemoglobin (HbF) inducer that mitigates many of the chronic complications in persons with SCD and is the principle U.S. FDA approved medication for adults (1998) and children (2017) with SCD. HU also reduces the episodes of acute chest syndrome, number of hospitalizations, and mortality. Known. Poor adherence to HU is associated with lower fetal hemoglobin and the protective factors associated with the treatment. Adherence strategies include treatment simplification and decreased dosing (1 or 2 times per day), behavioral interventions given 1 to 1, and linking adherence to routine habits. Proposed Solution. The Hydroxyurea Adherence Project (HAP) is a behavioral pilot intervention study. It can be summarized as a project using a set of behavioral intervention strategies to improve adherence to hydroxyurea (HU) and health outcomes in persons with sickle cell disease. This project is based on the findings from HU adherence literature to determine strategies that may promote HU adherence. The Parent Grant title: Implementation of medical homes for evidence-based care of adolescents and adults with sickle cell disease. The parent grant authors identified substantial study evidence that supports the benefit of HU. Currently, acceptance of HU is inadequate, given the considerable disease burden and early mortality associated nonadherence. Strategies to increase adoption of the SCD clinical practice guidelines13 including HU use within a Patient-Centered Medical Neighborhood model is an important goal. HU adherence can change the course of disease progression in persons with sickle cell disease and thus result in a healthier life. The goal of this project is to improve adherence to HU therapy by empowering the person with SCD in behavior change that supports adherence to hydroxyurea for the person’s health benefit.

问题.对药物和治疗的依从性不佳与增加 发病率和死亡率，相关的卫生保健费用估计在1000亿至3000亿美元之间 美元，全国。坚持对羟基脲（HU）是一个问题的人与镰状细胞 疾病（SCD）。一项具有里程碑意义的双盲随机对照试验证明了 成人SCD患者使用HU的比例。服用HU的受试者在 血管闭塞危象、住院和输血需求的频率。胡是 一种胎儿血红蛋白（HbF）诱导剂，可减轻人体的许多慢性并发症 是美国FDA批准用于成人（1998年）和儿童的主要药物 （2017）与SCD。HU还减少了急性胸部综合征的发作， 住院和死亡率。 知道的对HU的依从性差与胎儿血红蛋白降低有关， 与治疗相关的因素。依从性策略包括简化治疗， 减少给药（每天1或2次），行为干预给予1比1， 坚持常规的习惯。 建议的解决方案。羟基脲坚持项目（HAP）是一个行为试点 干预研究它可以被概括为一个项目，使用一套行为干预 改善患者对羟基脲（HU）的依从性和健康结果的策略 镰状细胞病本项目基于HU依从性文献的发现， 确定可能促进HU依从性的策略。 父母补助金标题：实施医疗之家，以证据为基础的护理， 青少年和成年人患有镰状细胞病。家长补助金的作者确定， 支持HU益处的大量研究证据。目前，HU的接受度为 由于疾病负担和相关的早期死亡率相当高， 不依从。提高SCD临床实践指南采用率的策略13 在以患者为中心的医疗社区模型中包括HU的使用是一个重要的目标。 HU粘附可以改变镰状细胞病患者的疾病进展过程 从而带来更健康的生活。该项目的目标是提高HU治疗的依从性 通过赋予SCD患者行为改变的能力， 对人体健康有益。