Correlates of Cross-Sectional and Longitudinal Health-Related Quality of Life Among Children with Autism Spectrum Disorders

Thursday, May 14, 2015: 11:30 AM-1:30 PM
Imperial Ballroom (Grand America Hotel)
K. Kuhlthau1, E. McDonnell2, N. Payakachat3, D. L. Coury4, J. Delahaye5 and E. Macklin5, (1)Department of Pediatrics, Massachusetts General Hospital, Boston, MA, (2)Biostatistics, Massachusetts General Hospital, Boston, MA, (3)Pharmacy Practice, University of Arkansas for Medical Sciences, Little Rock, AR, (4)Nationwide Children's Hospital, Columbus, OH, (5)Massachusetts General Hospital, Boston, MA

Studies of the health-related quality of life (HRQoL) of children with Autism spectrum disorders (ASD) have not examined the association of health conditions with HRQoL.  


We examine the associations of ASD-related characteristics, behavioral characteristics, and health conditions with baseline and longitudinal change in HRQoL. 


We examined HRQoL using the Pediatric Quality of Life Inventory (PedsQL) total scores for children enrolled in the Autism Speaks – Autism Treatment Network (AS-ATN) Registry. Children in the AS-ATN Registry were enrolled from 2008 through 2013 from 19 sites with a confirmed ASD diagnosis. We used linear regression to identify associations between baseline behavioral and health characteristics and baseline HRQoL and longitudinal structural mean models to test for baseline characteristics predictive of change in HRQoL over time. We examined the following characteristics: Age, race, gender, insurance status, household income, caregiver education, IQ, ASD diagnosis characteristics including the DSM-IV and the calibrated ADOS severity score, Child Behavior Checklist (CBCL) internalizing and externalizing scores, Children’s Sleep Habits Questionnaire (CSHQ) total scores, parent reported gastrointestinal (GI) symptoms (by type), and history of seizures and specific mental health problems. Longitudinal models were adjusted for potentially informative loss to follow-up using inverse-probability weights estimated from the same predictors.


Our sample of 5,624 children was 6.3±3.5 years old at baseline (range 2 to 18 years), 84% male, 77% Caucasian, 53% covered by private insurance, and 59% with an income of $50,000 or higher. Baseline analyses omitted 843 children who lacked PedsQL assessments completed within 60 days of their baseline visit. Children were followed for an average of 0.8 years (range 0 to 4 years).

Mean PedsQL score at baseline was 65.1 (range of 11.8 to 100).  All but ADOS and caregiver education independently predicted baseline PedsQL in bivariate analyses. In a multivariate model using stepwise selection considering all baseline characteristics, older age (beta=-1.40, p<.01), having any insurance (beta=-8.17, p<.01), higher CBCL externalizing  and internalizing scores (beta=-.23, p<.01;  beta=-.53, p<.01), higher CSHQ scores (beta=-.27, p<.01), caregiver education of at least some college (beta=-2.53, p<.01), having seizures (beta=-3.45, p<.05), having stomach pain (beta=-2.87, p<.01), and having stomach reflux (p=-2.01, p<.05) were associated with lower baseline PedsQL total scores.  

Baseline mean PedsQL total scores did not significantly improve or decline over time. Age, DSM-IV diagnosis, IQ, CBCL internalizing and externalizing scores, having anxiety, having depression, and having OCD were significant unadjusted predictors of PedsQL trajectory. In a multivariate longitudinal model, using stepwise selection considering all baseline characteristics, older age predicted slower decline in PedsQL (interaction beta=.49, p<.01) while having public insurance and history of seizures predicted faster decline (beta =-2.04, p<.05; beta=-4.13, p<.01, respectively). 


Similar to previous work, both behavioral issues and sleep problems are associated with lower baseline HRQoL. This study additionally found that physical characteristics including GI symptoms and seizures were associated with HRQoL. These results strongly suggest that paying attention to physical health is important for children with ASD.