title: The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  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.
authors.affiliation: Pediatric Palliative Care Consultation Program, Children's Hospital & Regional Medical Center-Seattle, Seattle, Washington 98180, USA. ross.hays@seattlechildrens.org
authors.forename: Ross M
authors.initials: RM
authors.lastname: Hays
authors.forename: Jeanette
authors.initials: J
authors.lastname: Valentine
authors.forename: Gerri
authors.initials: G
authors.lastname: Haynes
authors.forename: J Russel
authors.initials: JR
authors.lastname: Geyer
authors.forename: Nanci
authors.initials: N
authors.lastname: Villareale
authors.forename: Beth
authors.initials: B
authors.lastname: McKinstry
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.forename: Shervin S
authors.initials: SS
authors.lastname: Churchill
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003657:Decision Making; D005190:Family; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000628:therapy; D009422:Nervous System Diseases / Q000628:therapy; D010166:Palliative Care / Q000458:organization & administration; D010549:Personal Satisfaction; D010817:Physician-Patient Relations; D016730:Program Development; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014861:Washington