Characterisation of Quality of Life and Its Utility as a Descriptor of Health Outcomes for People With Profound Intellectual and Multiple Disabilities: A Scoping Review of Primary Studies

BACKGROUND: Establishing the effectiveness of interventions to promote quality of life is essential to providing evidence-based care, optimising outcomes and justifying expenditure on such provision. This review explores how quality of life for adults with profound intellectual disabilities is characterised, measured and utilised to evaluate health interventions in the research literature. METHODS: A scoping review of primary research published 2010-2024 was conducted in CINAHL, MEDLINE, APA PsycINFO, APA SocIndex, Education Source, PUBMED, Web of Science and Scopus. 31 publications met inclusion criteria. RESULTS: Quality of life is multifaceted. No agreed definition or parameters of good, poor, or meaningful changes to quality of life exist for people with profound intellectual disabilities. Existing quality of life scales are not responsive enough to detect changes brought about by health interventions. CONCLUSION: More effective tools are needed to provide meaningful quality of life information in relation to health interventions for people with profound intellectual disabilities.