ADVANCED STAGE CHRONIC DISEASE: SYMPTOMS, DISTRESS, CARE

晚期慢性病：症状、痛苦、护理

• 批准号: 6082978
• 负责人: SHARON L TENNSTEDT
• 金额: $ 49.74万
• 依托单位: NEW ENGLAND RESEARCH INSTITUTES, INC.
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-09-30 至 2003-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6082978
• 关键词: alternative medicine; behavioral /social science research tag; caregivers; chronic disease /disorder; chronic obstructive pulmonary disease; clinical research; congestive heart failure; family structure /dynamics; functional ability; health care cost /financing; health care personnel education; health care service utilization; health services research tag; human old age (65+); human subject; nursing care; psychological aspect of aging; quality of life; stress; terminal patient care

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.

充血性心力衰竭（CHF）和慢性阻塞性肺病（COPD）是65岁及以上人群的四大主要死因之一，分别困扰着460万和1600万美国人，每年的医疗保健支出总计近250亿美元。 这些患者可以被认为是“积极死亡”，因为他们经历了周期性危机的缓慢下降。 病人和家属对疾病和实际死亡过程的体验是非常复杂的，与其他疾病不同。 鉴于此，值得注意的是，每种疾病的复杂症状和相关痛苦受到的关注都少于癌症和艾滋病。 本研究的目的是：1）调查晚期CHF和COPD患者经历的所有症状的患病率和多维性质; 2）确定症状和结局如何随疾病进展而变化; 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，包括自我护理和补充医学以及对抗疗法治疗，5）估计护理费用。将从纽约的Beth Israel医学中心和波士顿的马萨诸塞州综合医院招募晚期CHF（n=100）和COPD（n=100）患者。 患者和他们的主要家庭照顾者将每三个月接受一次采访，最长持续30个月。 研究结果可用于加强姑息治疗，有助于提供者对临终关怀的教育，并为患者和家庭护理人员提供教育和支持服务。 最后，该研究将提供有关护理数量、来源和成本的数据，以改善临终护理的规划和协调。