The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life
The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life
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DOI：
10.1089/jpm.2006.9.716
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发表时间：
2006-06-01
影响因子：
2.8
通讯作者：
Churchill, Shervin S.
中科院分区：
文献类型：
--
作者：
Hays, Ross M.;Valentine, Jeanette;Churchill, Shervin S.
目的：本文介绍了1999-2001年期间在西雅图实施的儿科姑息治疗示范计划的组成部分。它报告了对登记参与者的生活质量和家庭满意度进行评估的结果。该计划旨在使用决策工具(DMT)加强患者与提供者的沟通，并试验临床医生和保险公司的管理，以支持晚期儿科严重疾病的决策。设计：项目设计包括伦理决策、提供者教育，以及通过保险公司和护理提供者之间的共同病例管理灵活管理医疗福利。评估研究设计是一项非实验性前测、后测设计，比较儿科生活质量和家庭满意度在项目进入时的比较，并在项目进入后3个月重复测量。用PedsQL(TM)4.0版的健康相关生活质量的父母代理报告测量生活质量，用项目人员设计的31个项目的自填式问卷测量家庭满意度。结果：41名年龄从婴儿期到22岁的患者参加了为期2年的项目。家长同意参加评估研究。在患者群体中有31种特定的诊断；34%是某种形式的癌症。在与健康相关的生活质量的每个领域中，观察到21对可供分析的配对在与健康相关的生活质量方面比基线有所改善；情感幸福感的积极变化在统计上具有显著意义。31项家庭满意度中有14项较基线改善有统计学意义。结论：儿科姑息关怀服务侧重于与保险公司的有效沟通、决策支持和共同病例管理，可提高生活质量和家庭满意度。
Purpose: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with comanagement by clinicians and insurers to support decision-making in advanced serious pediatric illness.Design: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a nonexperimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months postprogram entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL(TM)Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff.Results: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty-one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant.Conclusions: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.