Differing Perceptions Regarding Quality of Life and Inpatient Treatment Goals for Children With Severe Disabilities

OBJECTIVE: To describe and compare during an acute hospitalization the perceptions of parents, pediatric interns, and pediatric hospitalists regarding the long-term health-related quality of life (HRQoL) of children with severe disabilities when not hospitalized and to identify treatment goals. METHODS: Parents of children with severe disabilities aged 5 to 18 years, as well as the intern and hospitalist caring for the child during acute hospitalizations at a tertiary care center in Salt Lake City, Utah, participated in this study. All participants completed the KIDSCREEN-10 and an investigator-developed survey; a subset was interviewed to qualitatively ascertain perceptions of the child's HRQoL before the current acute illness. Responses were summarized with descriptive statistics and content analysis. RESULTS: We enrolled 115 subjects. Overall, parents rated the HRQoL of their children significantly higher than did either group of physicians on both the KIDSCREEN-10 (37.4 +/- 3.9 vs 29.6 +/- 5.5, P <.001) and the investigator-developed survey (30.3 +/- 5.9 vs 26.3 +/- 5.5, P <.001). Parents described the HRQoL of their children more positively and broadly than did physicians. Parents and physicians also expressed different goals for treatment. Parents expressed optimism despite uncertainty regarding their child's future, whereas physicians anticipated increased medical complications and focused on caregiver burden. CONCLUSIONS: Parents of children with severe disabilities rated their children's long-term HRQoL higher than physicians did. Such discrepancies may increase tensions and hinder shared decision-making efforts during acute hospitalizations. Explicit discussions between parents and physicians regarding the HRQoL of children with severe disabilities and treatment goals may facilitate care processes for everyone involved.