RESUMEN

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.

Asunto(s)

Calidad de Vida , Niño , Humanos , Masculino , Calidad de Vida/psicología

RESUMEN

The complexity and non-linear dynamics of socio-motor phenomena underlying social interactions are often missed by observation methods that attempt to capture, describe, and rate the exchange in real time. Unknowingly to the rater, socio-motor behaviors of a dyad exert mutual influence over each other through subliminal mirroring and shared cohesiveness that escape the naked eye. Implicit in these ratings nonetheless is the assumption that the other participant of the social dyad has an identical nervous system as that of the interlocutor, and that sensory-motor information is processed similarly by both agents' brains. What happens when this is not the case? We here use the Autism Diagnostic Observation Schedule (ADOS) to formally study social dyadic interactions, at the macro- and micro-level of behaviors, by combining observation with digital data from wearables. We find that integrating subjective and objective data reveals fundamentally new ways to improve standard clinical tools, even to differentiate females from males using the digital version of the test. More generally, this work offers a way to turn a traditional, gold-standard clinical instrument into an objective outcome measure of human social behaviors and treatment effectiveness.