Neurological Health: Not Merely the Absence of Disease: Current Wellbeing Instruments Across the Spectrum of Neurology

Benjamin Ziegeler; Wendyl D' Souza; Anita Vinton; Sarah Mulukutla; Cameron Shaw; Ross Carne

doi:10.1177/15598276221086584

Neurological Health: Not Merely the Absence of Disease: Current Wellbeing Instruments Across the Spectrum of Neurology

Am J Lifestyle Med. 2022 May 5;17(2):299-316. doi: 10.1177/15598276221086584. eCollection 2023 Mar-Apr.

Authors

Benjamin Ziegeler¹, Wendyl D' Souza², Anita Vinton³, Sarah Mulukutla⁴, Cameron Shaw⁵, Ross Carne

Affiliations

¹ University of Melbourne, Parkvile, VIC, Australia.
² St Vincent's Hospital, Fitzroy, VIC, Australia.
³ Alfred Health, Melbourne, VIC, Australia.
⁴ Mindful Neurology, PLLC, New York, NY, USA.
⁵ University Hospital Geelong, Deakin University, Geelong, VIC, Australia.

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.

Keywords: instrument; neurology; quality of life; well-being.