Cancer Assessments and Reports of End-of-Life Treatment

描述（由申请人提供）：尽管在治疗方面取得了重要进展，但对许多人来说，癌症仍然是一种致命的进行性慢性疾病。国家癌症政策委员会呼吁制定涵盖癌症护理范围的质量指标，包括支持性护理。正如医学研究所所指出的，优质医疗服务是基于最佳科学知识并满足癌症患者及其家人需求的服务。缺乏从被诊断患有危及生命的癌症到生命护理结束的时间点检查患者和家庭对护理质量的看法的措施。拟议中的研究将设计和验证调查，以检查具有重大死亡风险的癌症患者的医疗保健质量（即，晚期GI和肺癌）。与癌症患者和家庭的访谈将利用以患者为中心的报告方法，该方法适用于健康计划研究的消费者评估和衡量临终关怀的工具包（TIME）。衡量临终护理质量的一个重要障碍是，最严重的病人在接近死亡时无法接受面谈。因此，我们必须依靠代理人的报告-通常是亲密的家庭成员或不收集有关该患者护理质量的信息。本研究还将检查患者和代理人的反应的一致性，在丧亲期间代理人反应的稳定性，以及依赖患者死亡前后的代理人访谈的潜在偏差。焦点小组，专家小组的意见，和结构化的文献综述现有的指南将被用来设计三个调查工具，用于患者和代理人死亡前，这些相同的代理人在一段时间的丧亲之痛后死亡。将在两个研究中心进行自我管理调查（对无应答者进行电话随访）。在确诊或疾病进展到晚期时，将从罗得岛的肿瘤学家办公室和新罕布什尔州的诺里斯棉花综合癌症中心招募300对癌症患者及其代理人。在患者死亡前，将对这些配对进行多次访谈。分析将检查患者和代理感知的可靠性、有效性、一致性，以及患者死亡后3个月和9个月代理应答的稳定性。经验证的调查工具和关于其使用的资源指南将张贴在时代网站上，供癌症中心使用，以衡量生命终了护理的质量。这些工具将使机构能够衡量癌症护理是否满足患者和家庭成员的需求和期望。

DESCRIPTION (provided by applicant): Despite important advances in treatment, for many people cancer remains a progressive, chronic illness that is fatal. The National Cancer Policy Board has called for the development of quality indicators that cover the spectrum of cancer care, including supportive care. As noted by the Institute of Medicine, quality medical care is care that is based on the best scientific knowledge and meets the needs of the persons with cancer and their families. Measures that examine the patient and family perceptions of the quality of care from the time point of being diagnosed with life threatening cancer to end of life care is lacking. The proposed research will design and validate surveys to examine the quality of medical care for cancer patients with substantial risk of death (i.e., advanced GI and lung cancer). Interviews with the cancer patients and families will utilize the methodology of Patient Centered Reports as applied in the Consumer Assessment of Health Plan Study and a Toolkit of Instruments to Measure End-of-Life Care (TIME). An important obstacle to measuring the quality of care at end of life is the inability of most seriously ill persons to be interviewed close to death. Thus, we must rely on the reports of a proxy - usually a close family member or not collect information on that patient's quality of care. This research also will examine the concordance of patients' and proxies' responses, the stability of proxies' responses during bereavement, and potential bias of relying on proxy interviews prior to and after the patients' deaths. Focus groups, advice of an expert panel, and structured literature review of existing guidelines will be drawn upon to design three survey instruments to be used by patients and proxies prior to death and by those same proxies during a period of bereavement after the death. Self-administered surveys (with telephone follow-up of the non-responders) will be conducted at two sites. Three hundred pairs of cancer patients and their proxies will be enrolled from oncologist offices in Rhode Island and at the Norris Cotton Comprehensive Cancer Center in New Hampshire at the time of diagnosis or when their disease progresses to advanced stages. These pairs will be interviewed at multiple times prior to the death of the patients. Analysis will examine the reliability, validity, concordance of patient and proxy perceptions, and the stability of proxy response at 3 and 9 months after the patients' death. The validated survey instruments and a resource guide regarding its use will be posted on the TIME web site for use by cancer centers to measure quality of end of life care. Such tools will allow institutions to measure whether cancer care is meeting patient and family members' needs and expectations.