Commentary: What makes a life go well? Moral functioning and quality of life measurement in neurodevelopmental disorders - reflections on Jonsson et al. (2017).

摘要

Jonsson et al.’s excellent review of the literature on quality of life (QoL) and childhood mental and behavioural disorders (Jonsson et al., 2017) highlights the need for studies that utilise child selfreported QoL, in contrast to parent or proxy QoL measures, and further challenges the field to develop QoL measures that ‘put the child’s own views and priorities first’. The authors stop short of recommending that widely used measures such as the Paediatric Quality of Life Scale (PedsQL) (Varni, Seid, and Rode, 1999) be superseded by adapted measures that start with the child’s perspective. Rather, the authors suggest that individual items should be weighted based on relative importance to the child, and that raters should be trained to take on the child’s perspective (presumably based on evidence about children’s priorities). The authors also suggest that traditional measures such as the PedsQL could be supplemented with other kinds of data, including experience samples and qualitative data.