Accurately Assessing Change in Autistic Adults’ and Adults with ADHDs’ Quality of Life Over Time With use of Digital Support Tool Brain in Hand

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Abstract

Utility values derived from health-related quality of life measures are central to evaluating digital health interventions, yet commonly used tools may inadequately reflect the lived experiences of autistic people and individuals with ADHD. This can undermine the validity of measured changes in HRQoL and limit accurate assessment of intervention impact. This observational cohort study examined the reliability, validity, and responsiveness of utility values derived from two HRQoL measures - the EQ-5D-5L and WHODAS 2.0 - in 126 autistic adults and adults with ADHD using the digital support tool Brain in Hand . Participants were assessed at baseline, three months, and six months. Both measures showed adequate test-retest reliability and convergent validity, but WHODAS-derived utility values demonstrated superior internal consistency and were more sensitive to HRQoL differences between diagnostic groups. Significant increases in utility values were observed over time for both EQ-5D-5L (Δ = 0.038, p  = .02) and WHODAS (Δ = 0.067, p  < .001), with the WHODAS suggesting more pronounced and robust improvements. Psychometric differences were attributed to WHODAS’s inclusion of domains relevant to the experiences of autistic people and those with ADHD, such as executive functioning and interpersonal relationships. Findings indicate that WHODAS-derived utilities may offer a more psychometrically sound and sensitive approach than EQ-5D-5L when evaluating digital interventions for these populations. The study also supports the feasibility of BiH as a digital tool to improve HRQoL in autistic people and those with ADHD. These results have implications for utility value measurement in clinical research and resource allocation for digital mental health interventions.

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