Hays Ross M, Valentine Jeanette, Haynes Gerri, Geyer J Russel, Villareale Nanci, McKinstry Beth, Varni James W, Churchill Shervin S
Pediatric Palliative Care Consultation Program, Children's Hospital & Regional Medical Center-Seattle, Seattle, Washington 98180, USA.
J Palliat Med. 2006 Jun;9(3):716-28. doi: 10.1089/jpm.2006.9.716.
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 co-management by clinicians and insurers to support decision making in advanced serious pediatric illness.
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 non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff.
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.
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.
本文介绍了1999年至2001年期间在西雅图实施的一项儿科姑息治疗示范项目的组成部分。报告了对登记参与者的生活质量和家庭满意度评估的结果。该项目旨在使用决策工具（DMT）加强医患沟通，并尝试由临床医生和保险公司共同管理，以支持晚期严重儿科疾病的决策制定。
项目设计包括道德决策、提供者教育，以及通过保险公司和护理提供者之间的联合病例管理灵活管理健康福利。评估研究设计是一种非实验性的前测、后测设计，比较项目开始时儿科生活质量和家庭满意度，并在项目开始后3个月进行重复测量。生活质量通过使用儿童生活质量量表（PedsQL()）4.0版由家长代理报告的与健康相关的生活质量来衡量，家庭满意度通过项目工作人员设计的一份31项的自填问卷来衡量。
在两年期间，该项目共招募了41名年龄从婴儿期到22岁的患者。家长同意参与评估研究。患者群体中有31种具体诊断；34%为某种形式的癌症。在健康相关生活质量的每个领域中，对21对可用于分析的匹配组进行观察，发现与基线相比健康相关生活质量有所改善；情绪幸福感报告中的积极变化具有统计学意义。31项家庭满意度项目中有14项较基线有统计学显著改善。
专注于有效沟通、决策支持以及与保险公司联合病例管理的儿科姑息治疗服务可以改善生活质量和家庭满意度的各个方面。
