Beyond benchmarks: a narrative review of evolving quality of life frameworks for children with neurodevelopmental and learning disabilities and the need for integrated digital twin approaches

Beginning with an overview of the current state of Quality of Life (QoL), this narrative review provides a synthesis of thirty articles published between 2007 and 2026 to provide insight into the evolution of QoL frameworks, how QoL data tracking has been operationalized by these frameworks, and where the gaps are. While the literature has moved from a focus on deficits and impairment to a strengths-based approach centered around the child, and aligned with the principles of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), one theoretical framework (Schalock & Verdugo’s Eight Domain Model) was identified as being used most often by researchers. In addition, several instruments were also identified as commonly used to measure QoL, which include generic health related QoL frameworks, family QoL frameworks, and Ecological Momentary Assessment (EMA). However, several recurring limitations were identified across the reviewed frameworks, including: (1) use of proxy reports; (2) static or cross-sectional design; (3) fragmentation in terms of number of domains assessed, informant type and assessment methodology; (4) lack of sensitivity to changes in QoL over time in children who experience severe levels of disability; and (5) large gaps between new technology available to support QoL assessments and traditional periodic assessments. Therefore, the reviewed literature suggests that no single framework adequately captures the full range of factors influencing QoL for children with neurodevelopmental and learning disabilities, highlighting the need for a more integrated and comprehensive approach. As such, the findings suggest that digital twin approaches may provide a promising direction for the development of next-generation QoL frameworks. No study identified in this review applied a digital twin approach to QoL assessment in this population. Digital twin approaches are therefore considered a prospective direction for further investigation rather than an empirically established solution, with their potential application to pediatric QoL requiring future implementation and validation.