ADVANCED STAGE CHRONIC DISEASE: SYMPTOMS, DISTRESS, CARE

充血性心力衰竭(CHF)和慢性阻塞性肺疾病(COPD)是65岁及以上人群的四大主要死亡原因之一，分别困扰着460万和1600万美国人，导致每年医疗保健支出加起来近250亿美元。这些患者可以被认为是“主动死亡”，因为他们经历了周期性危机的缓慢下降。患者和家人的疾病经历和实际死亡过程都非常复杂，与其他疾病截然不同。有鉴于此，值得注意的是，每种疾病的复杂症状和相关痛苦比与癌症和艾滋病有关的疾病受到的关注更少。这项研究的目的是：1)调查晚期CHF和COPD患者经历的所有症状的患病率和多面性；2)确定症状和结果如何随着疾病的进展而变化；3)调查各种症状对患者和家庭照顾者的痛苦和生活质量的影响；4)调查护理的利用情况，包括除对症治疗外的自我护理和补充药物，以及5)估计护理成本。晚期CHF(n=100)和COPD(n=100)的患者将从纽约的贝斯以色列医疗中心和波士顿的马萨诸塞州综合医院招募。患者和他们的主要家庭照顾者将每三个月接受一次访谈，最长可达30个月。研究结果可用于加强姑息治疗，促进临终关怀提供者的教育，并为患者和家庭照顾者发展教育和支持服务。最后，这项研究将提供有关护理的数量、来源和成本的数据，这将改善临终护理的规划和协调。

Congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) are among the top four leading causes of death in persons age 65 and over, afflict 4.6 million and 16 million Americans respectively, and result in almost 25 billion dollars in annual health care expenditures combined. These patients can be thought of as "actively dying" as they experience a slow decline with periodic crises. The experience of both the illness and the actual dying process for the patient and family are highly complex and distinct from other illnesses. Given this, it is remarkable that the complex symptom profiles and associated distress of each disease have received less attention than those associated with cancer and AIDS. The Aims of this study are to: 1) investigate the prevalence and multidimensional nature of all symptoms experienced by patients with advanced stages of CHF and COPD; 2) determine how symptoms and outcomes change with progression of disease; 3) investigate the effect of various symptoms on the distress and quality of life of both patient and family caregiver; 4) investigate the utilization of care, including self-care and complementary medicine in addition to allopathic treatment, and 5) estimate the costs of care. Patients with advanced stage CHF (n=100) and COPD (n=100) will be recruited from Beth Israel Medical Center in New York and the Massachusetts General Hospital in Boston. Patients and their primary family caregivers will be interviewed every three months for up to 30 months. Study results can be used to enhance palliative care, contribute to provider education regarding end-of-life care, and develop education and support services for patients and family caregivers. Finally, the study will provide data on the amount, source, and costs of care that will improve planning and coordination of end-of-life care.