468 - Which measures of quality of life align best with what matters to children with medical complexity and their families?

Publication Number: 468.7079

Isabel K. Taylor, University of Utah School of Medicine, Salt Lake City, UT, United States; Stefanie G. Ames, University of Utah School of Medicine, Salt Lake City, UT, United States; Steph Lomangino, Family Voices, Bloomfield, CT, United States; Hannah Friedman, University of Colorado School of Medicine, Aurora, CO, United States; Margaret Comeau, Boston University School of Social Work, Milton, DE, United States; Bethlyn Houlihan, Center for Innovation in Social Work & Health, BUSSW, Boston, MA, United States; Kirk Bjella, University of Utah School of Medicine, Salt Lake City, UT, United States; Christopher Stille, University of Colorado School of Medicine, Aurora, CO, United States

Background: Despite the existence of many quality of life (QoL) measures, there is a growing concern that existing measures do not adequately reflect the depth and breadth of QoL for children with medical complexity (CMC), with many consisting largely of measures of functional capacity without consideration for different abilities of CMC. Measuring QoL in CMC requires an understanding of the priorities and values of children and their caregivers. These aspects have been outlined through a family-partnered process to elicit elements of a healthy life for CMC. The alignment of current QoL measures with what matters to CMC and their caregivers has not been systematically examined.

Objective: To determine how well measures of pediatric QOL represent elements of a healthy life for CMC.

Design/Methods: QoL measures were identified from a scoping review and review of the gray literature. All measures found were surveys. Individual surveys were obtained from publicly available literature or purchased directly. Items in each survey were evaluated in duplicate by two independent reviewers for conceptual mapping to 77 elements within 10 domains of a healthy life for CMC (Barnert et al., Pediatrics 2018). Items were determined to be a complete map if the item wording reflected the element completely, or a partial map if an element would require re-wording. Items were also assessed for the relationship to a physical function (e.g. walking a block). Discrepancies were reconciled through discussion.

Results: There were 33 generic surveys included in the analysis. Within these surveys, there were 989 items which were mapped to the elements and domains of a healthy life for CMC. Domains captured in each survey averaged 3±1 (range:1-7/10.) Surveys, on average, contained 2±2 (range: 0-6/77) elements that completely mapped and 7±4 (range: 1-23/77 that partially mapped). Of the 989 items, 408 (41.3%) did not map to any element. 24 (73%) surveys included one or more items focused on physical function as a construct of QoL. The surveys with the most domains captured included the National Survey of Children’s Health (8/10) and the Impact of Childhood Illness Scale (6/10).

Conclusion(s): There is a gap between existing QoL measures and elements of a healthy life for CMC. While many surveys were identified, most addressed a limited number of domains of a healthy life for CMC, and none included all domains. Furthermore, the inclusion of physical function as critical to QoL in most surveys may reflect potential for ableism. These findings highlight the need for QoL assessment tools co-developed with CMC and their caregivers.