Predictors of Health-Related Quality of Life in Neurodivergent Children: A Systematic Review

Abstract

Health-related Quality of Life (HRQoL) is a multi-faceted construct influenced by a myriad of environmental, demographic, and individual characteristics. Our understanding of these influencers remains highly limited in neurodevelopmental conditions. Existing research in this area is sparse, highly siloed by diagnosis labels, and focused on symptoms. This review synthesized the evidence in this area using a multi-dimensional model of HRQoL and trans-diagnostically across neurodevelopmental conditions. The systematic review, conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Checklist, was completed in June 2023 using Medline, PsycInfo, Embase, PubMed, and Cochrane Library. Our search revealed 78 studies that examined predictors of HRQoL in neurodevelopmental conditions. The majority of these studies focused on autism and ADHD with a paucity of literature in other conditions. Cross-diagnosis investigations were limited despite the fact that many of the examined predictors transcend diagnostic boundaries. Significant gaps were revealed in domains of biology/physiology, functioning, health perceptions, and environmental factors. Very preliminary evidence suggested potentially shared predictors of HRQoL across conditions including positive associations between HRQoL and adaptive functioning, male sex/gender, positive self-perception, physical activity, resources, and positive family context, and negative associations with diagnostic features and mental health symptoms. Studies of transdiagnostic predictors across neurodevelopmental conditions are critically needed to enable care models that address shared needs of neurodivergent individuals beyond diagnostic boundaries. Further understanding of HRQoL from the perspective of neurodivergent communities is a critical area of future work.

Predictors of health-related quality of life for children with neurodevelopmental conditions

“…Internalizing and externalizing behaviours have been previously associated with QoL 21 and one’s subjective well-being 76 . These results are consistent with the findings of a recent systematic review which highlighted the negative impact of mental health symptoms on HrQoL in neurodevelopmental conditions 15 , as well as the results of a study examining perspectives of autistic adults on quality of life 77 . Mental health symptoms, including externalizing and internalizing behaviours, are also transdiagnostic domains which are impacted across neurodivergent groups 78 – 81 .…”

“…In total, 14 measured variables and three latent variables were included in the model. The paths in the SEM model were informed by the Wilson and Cleary model as well as prior literature, including a recent systematic review 15 . In particular, core and co-occurring symptoms were linked to model the potential association among these domains 58 , 59 .…”

“…Some of the factors that may contribute to this variability include individual differences in profiles of strengths and needs, and social, demographic, economic, and environmental factors; however, the contribution of these factors to HrQoL remains relatively unknown for children with neurodevelopmental conditions. Our recent systematic review revealed significant gaps in our understanding of predictors of HrQoL in neurodevelopmental conditions 15 . At the same time, the review found that many predictors of HrQoL transcend diagnosis boundaries (e.g., adaptive functioning, mental health), motivating a transdiagnostic approach.…”

“…In addition to these domains, autism, ADHD, and OCD are also associated with increased risk of mental health symptoms including internalizing (inwardly focused behaviours including anxiety and depression) and externalizing behaviours (outwardly focused behaviours including impulsivity, rule breaking, and aggression) 13 , 17 , 18 , associated with decreased psychological well being 19 , 20 and can negatively impact HrQoL 9 , 16 , 21 . However, studies examining the effect of these challenges on HrQoL in autism, ADHD, and OCD are limited, have small sample sizes, and only consider a subset of variables in isolation 10 , 15 , 22 , 23 .…”