Health-Related Quality of Life in Ambulatory Children with Physical Disabilities

• Sana Patil, Human Physiology, University of Delaware

• Reid Nichols, Orthopedics, Nemours A.I. Dupont Hospital for Children
• Chris Church, Orthopedics, Nemours A.I. Dupont Hospital for Children

Health-related quality of life (HRQOL) is defined as “wellbeing in physical, mental, and social domains of health.” This study evaluated HRQOL in children with common physical disabilities and examined its relationship with gross motor ability.

In this IRB approved retrospective study, the parent-reported Pediatric Outcomes Data Collection Instrument (PODCI), and Section D of the Gross Motor Function Measure (GMFM-D) were administered to ambulatory children aged 2-18 with Cerebral Palsy (CP; GMFCS II), arthrogryposis, achondroplasia, and Morquio syndrome during clinical visits to the Gait Laboratory. The PODCI is validated for children (age 2-10) and adolescents (age 11-18) and assesses perceptions about mobility, happiness, and pain. The relationship between PODCI and GMFM-D scores was analyzed with Pearson correlations. Differences in HRQOL were examined by comparing PODCI scores between diagnostic groups using the Wilcoxon Rank Sum test with Bonferroni corrections and comparing diagnostic groups to published norms (TDY) using t-tests.

Children and adolescent groups within all 4 diagnoses demonstrated limited mobility and higher pain compared to TDY (p<0.015). Happiness was lower in children and adolescents with CP, AMC, and children with Morquio Syndrome compared to TDY (p<0.002). Among diagnostic groups, global function was higher (p<0.0001) in people with Achondroplasia (83(2)), compared to people with AMC (73(3)), CP (72(2)), and Morquio syndrome (66(4)). Despite functional differences, there were no significant differences between the four diagnoses in pain (p>0.10).  Happiness was lower in people with CP (80(3)) compared to Achondroplasia (90(3); p=0.01). GMFM-D was associated with the PODCI mobility domains for all diagnoses (r=0.31 to 0.79, p<0.03), but was not correlated with the happiness domain for any group (r=-0.16 to 0.092; p>0.14), GMFM-D and PODCI pain scores were correlated only in children with Achondroplasia (r=0.355; p<0.001).

Significant limitations in HRQOL are seen in children with the most common physical disabilities of childhood. Pain is present at higher levels than non-disabled peers and tends not to be related to low motor function. Happiness was also not associated with gross motor function suggesting the need to examine other contributors when mental health concerns exist in children with physical disabilities.