ENABLE: CHF-PC (Comprehensive Heartcare For Patients and Caregivers)

 描述(申请人提供)：近500万美国人，其中大多数超过65岁，携带心力衰竭(HF)的诊断。尽管治疗取得了进展，但仍有50%的人将在5年内死亡；年龄增长和农村环境是心力衰竭发病率和死亡率最高的风险因素。在去世前的一年，心力衰竭患者将经历多次住院以及个人和经济代价，无法缓解身体和精神上的痛苦。目前，只有19%的处于医疗保险年龄的心衰患者(及其家庭照顾者)获得了有益的姑息治疗服务，而晚期癌症患者的这一比例超过了一半。患有心力衰竭的老年患者和他们的照顾者很少获得姑息支持护理服务，因为这种疾病是不可预测的，在尝试其他药物治疗之前可能无法提供姑息治疗。我们和其他人已经在晚期癌症中证明了同时姑息治疗在生活质量(QOL)、症状负担、抑郁以及某些情况下的生存方面取得了有益的结果。该干预措施借鉴了我们成功的癌症姑息治疗模式(Enable：教育、培育、建议、临终前)。我们的总体目标是测试并发心力衰竭姑息护理模式在降低晚期心力衰竭患者发病率方面的有效性。这项随机对照试验(RCT)将比较380名患有NYHA III/IV期心衰的老年人和228名照顾者的生活质量、症状负担、情绪、慢性病和临终关怀的质量。一半的患者参与者(n=190)将被随机分配到干预组，另一半(n=190)将接受常规的心衰治疗。RCT的具体目标是：Enable：CHF-PC(为患者和照顾者提供的全面心脏护理)：1)确定Enable：CHF-PC在基线后8周和16周是否导致晚期心衰患者报告的生活质量和情绪(抑郁/焦虑)更高；以及更低的症状负担和资源使用(如住院和天数、急诊)；2)确定Enable是否：CHF-PC在基线后8和16周导致更高的照顾者报告的QOL、情绪(焦虑/抑郁)、自我报告的健康和更低的照顾者负担。这项研究与公共卫生的相关性在于，迫切需要改善农村地区患有晚期心力衰竭的老年人及其照顾者的常规护理。这项研究将对这一努力作出重大贡献。

 DESCRIPTION (provided by applicant): Almost 5 million Americans, most over age 65, carry a diagnosis of heart failure (HF). Despite treatment advances, 50% will die within 5 years; increasing age and rural environment are risk factors associated with the greatest HF morbidity and mortality. In the year before death, HF patients will experience multiple hospitalizations and personal and economic costs of unrelieved physical and emotional suffering. Currently, only 19% of Medicare-aged HF patients (and their family caregivers) access beneficial palliative care services, compared with more than half of advanced cancer patients. Older patients with HF and their caregivers, rarely have access to palliative supportive care services because the disease is unpredictable and palliative treatment may not be provided until after other medical treatments have been tried. We and others have demonstrated in advanced cancer that concurrent palliative care achieves beneficial outcomes in quality of life (QOL), symptom burden, depression, and in some case survival. The intervention is adapted from our successful palliative care model for cancer (ENABLE: Educate, Nurture, Advise, Before-Life- Ends). Our overall goal is to test the efficacy of a concurrent HF palliative care model in reducing the morbidity of living with advanced HF. This randomized controlled trial (RCT) will compare the quality of life, symptom burden, mood, and the quality of chronic illness and end-of-life care in 380 older adults with NYHA stage III/IV HF and 228 caregivers. Half of the patient participants (n=190) will be randomized to the intervention and half (n=190) will receive usual HF care. The specific aims of the RCT; ENABLE: CHF-PC (Comprehensive Heart care for Patients and Caregivers), are to 1) Determine whether ENABLE: CHF-PC leads to higher advanced HF patient-reported QOL and mood (depression/anxiety); and lower symptom burden and resource use (e.g. hospital admissions and days, emergency visits) at 8 and 16 weeks after baseline and to 2) Determine whether ENABLE: CHF-PC leads to higher caregiver-reported QOL, mood (anxiety/depression), and self-reported health and lower caregiver burden at 8 and 16 weeks after baseline. The relevance of this research to public health is that there is an urgent need to improve the routine care of older adults in rural areas with advanced heart failure and their caregivers. This study will contribute substantially to that effort.