Rieker P P, Clark E J, Fogelberg P R
Dana Farber Cancer Institute, Boston, MA.
Oncol Nurs Forum. 1992 Apr;19(3):433-40.
This retrospective, descriptive study was undertaken to identify patient and family perceptions about quality of life (QOL) and quality of care (QOC) after experimental biological therapy. A mail survey that included instruments designed to measure QOL (the Profile of Mood States [POMS] and the Linear Analogue Self-Assessment [Lasa]) and QOC was sent to patients (response rate, 60%) and to relatives of deceased patients (response rate, 70%). Bivariate and multivariate statistics were used to analyze the data. Patients reported a relatively good quality of life, as measured by POMS and LASA scores. The majority of living patients and of family members of deceased patients were positive about the QOC received; relatives were significantly less positive than patients. Four components were significant in respondents' assessment of QOC: adequate symptom control, availability of support services, communication with the medical team, and receiving information about response to treatment. The findings suggest that there is a need to supplement survival data and biomedical outcomes with information about patient and family perceptions about care and treatment.
本回顾性描述性研究旨在确定患者及其家属对实验性生物治疗后生活质量（QOL）和护理质量（QOC）的看法。一项邮件调查被发送给患者（回复率为60%）和已故患者的亲属（回复率为70%），该调查包含旨在测量生活质量（情绪状态剖面图[POMS]和线性模拟自我评估[Lasa]）和护理质量的工具。采用双变量和多变量统计方法对数据进行分析。根据POMS和LASA评分，患者报告生活质量相对较好。大多数在世患者和已故患者的家属对所接受的护理质量持积极态度；亲属的积极程度明显低于患者。在受访者对护理质量的评估中，有四个因素很重要：症状得到充分控制、支持服务的可获得性、与医疗团队的沟通以及获得有关治疗反应的信息。研究结果表明，有必要用患者及其家属对护理和治疗的看法信息来补充生存数据和生物医学结果。
