Health Status and Health-Related Quality of Life in a Pediatric Palliative Care Program

Abstract Background: Children with life-threatening illnesses have unique physical and psychosocial needs that pediatric palliative care programs can address. Integrated programs strive to address these needs from the point of diagnosis through death, if needed, at the same time that curative care is provided. To better understand the variation in these needs, we assessed the health status and health-related quality of life (HRQOL) of children enrolled in an integrated pediatric palliative care program. Methods: A telephone survey was conducted with 98 parents whose children were enrolled in an integrated pediatric palliative care program in Florida. The Health Utilities Index (HUI) system was used to assess health status and HRQOL. Results: HUI2 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to self-care, mobility, and sensation, and the least impairment with emotion. HUI3 attribute levels show that children have the greatest impairment with moder...