ABSTRACT
OBJECTIVE: Well-being and quality of life can vary independently of disease. Instruments measuring well-being and quality of life are commonly used in neurology, but there has been little investigation into the extent in which they accurately measure wellbeing/quality of life or if they merely reflect a diseased state of an individual. DESIGN: Systematic searches, thematic analysis and narrative synthesis were undertaken. Individual items from instruments represented in ≥ 5 publications were categorised independently, without prior training, by five neurologists and one well-being researcher, as relating to 'disease-effect' or 'Well-being' with a study-created instrument. Items were additionally categorised into well-being domains. DATA SOURCES: MEDLINE, EMBASE, EMCARE and PsycINFO from 1990 to 2020 were performed, across the 13 most prevalent neurological diseases. RESULTS: 301 unique instruments were identified. Multiple sclerosis had most unique instruments at 92. SF-36 was used most, in 66 studies. 22 instruments appeared in ≥ 5 publications: 19/22 'well-being' outcome instruments predominantly measured disease effect (Fleiss kappa = .60). Only 1/22 instruments was categorised unanimously as relating to well-being. Instruments predominantly measured mental, physical and activity domains, over social or spiritual. CONCLUSIONS: Most neurological well-being or quality-of-life instruments predominantly measure disease effect, rather than disease-independent well-being. Instruments differed widely in well-being domains examined.
