Family Led Research on Quality of Life Domains and Instruments across Neurodevelopmental Disorders

Background: The Province of Ontario Neurodevelopmental Disorders Network (POND) is a large neuroscience program that aims to translate findings into treatments. With over 4,000 children and youth, POND has an active Participant Advisory Committee (PAC) composed of parents/caregivers and youth. The goal of this study, led by PAC members, was to operationalize the construct of “good adult outcomes” for people living with neurodevelopmental disorders (NDDs) and to find the most appropriate measurement tool(s) to quantify quality of life (QoL) for POND participants as they age into adulthood.

Methods: In this study, the POND PAC met iteratively to define and prioritize QoL domains and “good adult outcomes” for adults diagnosed with a NDD. Through a literature review, QoL measures applicable to NDD populations were selected and reviewed at the item level. Key QoL domains were then mapped to existing QoL measurement tools to select the best QoL measures for the POND NDD population.

Results: The PAC identified eight key QoL domains, which were then ranked in order of importance. The domains included psychological health, life productivity and skills, environment, physical health, emotional distress, social relationships, financial, and subjective well-being. Nine QoL measurement tools were identified as appropriate for this population, of which three measures, the WHOQOL-BREF, ASQoL-9, and WHO Well-being-5, were determined to cover all of the domains.

Conclusions: No single tool covered all the QOL domains prioritized by families, and the complexity of transdiagnostic experiences was not fully captured by existing measures. Several limitations are highlighted, including self-reporting accessibility, whether the current tools capture the priorities of the NDD community, and the inconsistency of constructs across disorders and studies.

Implications for Social Work Research: This study exemplifies community-based participatory research by centring the voices of families and youth living with neurodevelopmental disorders in defining what "good adult outcomes" truly mean for their communities, ensuring that those most affected drive the research agenda. By co-producing knowledge with a Participant Advisory Committee, this work advances democratic principles of equity, inclusion, and shared power that are foundational to social work practice.