The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life

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.