Development and Validation of a Psychosocial Quality of Life Questionnaire for Individuals with Neurodevelopmental Disorders

Background: Quality of life (QoL) measures are important intervention and evaluation outcome factors when providing services to individuals with disabilities. Psychosocial QoL is particularly important for caregivers and families of individuals with autism and other developmental disabilities. Most of the existing QoL measures are geared toward physical illnesses or specific developmental conditions. There is a strong need for a measure that is applicable to a range of neurodevelopmental disorders. The Child and Family Quality of Life (CFQL) measure was developed to evaluate psychosocial QoL in neurodevelopmental disorder populations.

Objectives: The primary aim of this study was to psychometrically evaluate the CFQL to ensure high reliability of measurement. A secondary objective was to investigate differences in quality of life between children diagnosed with an Autism Spectrum Disorder (ASD) versus children with other developmental disabilities (non-ASD).

Methods: Caregivers of 212 individuals (ages 1-7) referred for concern of ASD completed the Child and Family Quality of Life (CFQL) instrument immediately before the first diagnostic assessment visit. The CFQL includes seven scales designed to measure different aspects of child and family QoL: child, family, caregiver, partner relationship, external support, financial, and coping. Scales were designed to be brief, easy-to-complete, and to generate specific clinical actions for scores suggestive of QoL impairment. Average item scores per scale range from 1-5, with scores ≤2 indicating low quality of life. Statistical analyses used to psychometrically evaluate the CFQL included: factor analyses to determine instrument structure, internal consistency reliability, and item response theory-derived reliability estimates across each scale’s latent trait. Group comparisons (ASD vs. non-ASD) across CFQL scales examined whether QoL differed between ASD and non-ASD cases.

Results: Factor analyses identified six distinct, positively correlated, factors. Each of the original seven scales comprised a separate factor, with the exception that family and caregiver quality of life items had very high relationships and merged into a single factor in this young sample. Internal consistency reliability was good to excellent for these 4-5 item scales (α=.77-.97), with the exception of marginal reliability for coping (α=.67). Item response theory analyses demonstrated adequate to excellent measurement in the middle of each latent trait from 2SD to +2SD (Reliability >.50), with adequate measurement down to -3SD (low QoL) for some scales.  CFQL score distributions suggested highly variable QoL, with a non-trivial proportion of caregivers reporting low child, family, caregiver, and financial QoL (6.1% to 22.2% across scales) immediately prior to the diagnostic evaluation. Lastly, group comparisons found that caregivers of children with ASD reported significantly lower family quality of life (t(210)=2.15, p=.033; Cohen’s d=.30) relative to caregivers of non-ASD children. Non-significant trends were also noted for child (p=.060), caregiver (p=.095), and partner relationship (p=.057).

Conclusions: Consistent with previous literature, a significant proportion of families affected by neurodevelopmental disorders report psychosocial QoL disturbance. Interventions are needed that address family QoL very soon after ASD diagnosis. The CFQL appears to be a useful clinical tool at the diagnostic stage for identifying QoL disruptions and developing clinical actions.