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Published on: June 20, 2020
Differing perceptions regarding quality of life and inpatient treatment goals for children with severe disabilities
Robyn Nolan1, Brenda Luther2, Paul Young3
1Department of Developmental Behavioral Pediatrics, University of Colorado, Denver, Aurora, Colo.
Insights
Parents perceive their children with severe disabilities have better long-term health-related quality of life (HRQoL) than physicians do. These differing views on HRQoL and treatment goals can impact shared decision-making during hospitalizations.
Area of Science:
- Pediatric hospital medicine
- Child disability studies
- Health-related quality of life research
Background:
- Children with severe disabilities often experience acute hospitalizations.
- Understanding perceptions of long-term health-related quality of life (HRQoL) is crucial for effective care.
- Discrepancies in perception between parents and healthcare providers can complicate treatment decisions.
Purpose of the Study:
- To compare parent and physician perceptions of long-term HRQoL in children with severe disabilities.
- To identify differing treatment goals between parents and pediatric healthcare providers.
- To explore these perceptions during acute hospitalizations.
Main Methods:
- Surveyed parents, pediatric interns, and hospitalists using KIDSCREEN-10 and a custom survey.
- Conducted qualitative interviews with a subset of participants.
- Included parents of children aged 5-18 with severe disabilities during acute hospitalizations at a tertiary care center.
Main Results:
- Parents rated their children's HRQoL significantly higher than physicians did on both measures.
- Parents provided more positive and broader descriptions of their children's HRQoL.
- Parents and physicians reported different treatment goals, with parents optimistic and physicians focused on complications and burden.
Conclusions:
- Significant disparities exist between parent and physician ratings of long-term HRQoL for children with severe disabilities.
- These perception gaps can create tension and impede shared decision-making.
- Open communication about HRQoL and treatment goals is essential for improved care processes.
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.
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