Health-Related Quality of Life of Individuals with Physical Disabilities in Childhood

Abstract

Background: The use of patient-reported outcomes is essential to understand and manage health-related quality of life (HRQOL) in youth with lifelong disabilities. This study evaluated HRQOL in youth with physical disorders and examined its relationship with mobility. Methods: We conducted an IRB-approved retrospective study in which we administered the parent-reported Pediatric Outcomes Data Collection Instrument (PODCI) and Gross Motor Function Measure section D (GMFM-D) to ambulatory youth aged 2-18 years with cerebral palsy (CP; Gross Motor Function Classification System II; n = 258), arthrogryposis (n = 138), achondroplasia (n = 102), and Morquio syndrome (n = 52) during clinical visits to a gait lab. The PODCI has two validated versions, child and adolescent, that assess perceptions about mobility, happiness, and pain. Differences in HRQOL between diagnostic groups, between age groups, and compared with non-disabled youth were examined using non-parametric tests. The relationship between GMFM-D and PODCI scores was analyzed with Pearson's correlations. Results: Both age cohorts within all diagnosis groups demonstrated higher pain and lower mobility compared with non-disabled youth (p < 0.015). Happiness was lower for both age groups with CP and arthrogryposis, and for the child group with Morquio syndrome compared with non-disabled youth (p < 0.002). In diagnostic groups in both age spans, Global Function was higher (p < 0.0001) for those with achondroplasia compared with other groups. Despite functional differences, there were no significant differences between diagnostic groups in pain scores (p > 0.10). Happiness was lower in the group with CP compared with that with achondroplasia (p = 0.01). GMFM-D was related to PODCI mobility scores for all diagnoses (r = 0.31 to 0.79, p < 0.03) but was not correlated with happiness (r = -0.16 to 0.092; p > 0.14); GMFM-D and PODCI pain scores were associated only for the child group with achondroplasia (r = 0.355; p < 0.001). Conclusions: Significant limitations in HRQOL are present in youth with physical disabilities. Pain levels were higher than those of non-disabled youth, but pain was not related to lower motor function. Happiness was not related to gross motor function, suggesting the need to examine other factors when mental health concerns are present in youth with disabilities.

Keywords: Morquio syndrome; achondroplasia; arthrogryposis; cerebral palsy; health-related quality of life.