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.
| Teno, Joan M; Lima, Julie C; Lyons, Kathleen Doyle (2009) Cancer patient assessment and reports of excellence: reliability and validity of advanced cancer patient perceptions of the quality of care. J Clin Oncol 27:1621-6 |
| Portenoy, Jason; Teno, Joan M (2007) Hispanic language version of the family evaluation of hospice care. J Pain Symptom Manage 34:459-61 |
