Author(s): James E.C.; Mills R.J.; Young C.A.; Tennant A.
Source: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; 2018; vol. 19 ; p. 193
Publication Date: 2018
Publication Type(s): Conference Abstract
Abstract:Background: The World Health Organisation Disability Assessment Scale (WHODAS-2.0) is a generic patientreported scale measuring disability in six life domains, namely Understanding and Communication, Getting around, Self-care, Getting along with people, Life activities, and Participation in Society. To our knowledge, there are no publications using the WHODAS-2.0 to assess disability in MND/ALS. Objective(s): To analyse levels of disability, as defined by WHODAS-2.0, in people with MND/ALS (pwMND). Method(s): As part of the ongoing UK wide Trajectories of Outcomes in Neurological Conditions (TONiC) study, questionnaire packs were completed by pwMND, including data on demographics and the WHODAS-2.0. Clinicians provided data on disease onset type and duration since diagnosis. The WHODAS-2.0 scales were analysed without the four work items because few participants were working. Scores were calculated using the simple and complex methods, the latter provides a weighted 0-100 metric (1). Non-parametric analyses were performed with Kruskal-Wallis ANOVA. Result(s): From 636 participants, median duration since diagnosis was 11.2 months (IQR 4.6-29.9); 67.3% had limb onset, 27.3% bulbar onset, 1.7% respiratory onset, and 3.5% unknown onset type; 475 provided WHODAS-2.0 data with no missing values. Mean total weighted WHODAS-2.0 score was 39.2 (range 0-91.3). Gender and marital status were not significantly associated with WHODAS-2.0 disability levels. Disability domains of the WHODAS-2.0 showed significant difference by onset type; the Communication and Getting Along with People domains were worse for bulbar onset and Self-care, Mobility, and Life Activities worse for limb onset and more so, respiratory onset (Kruskal Wallis p=<=0.001). The Participation domain showed no significance. The total score of the WHODAS-2.0 also showed a significant difference across onset type (Kruskal Wallis p=0.016). Using the inter-quartile range to define duration groups, an expected increasing gradient was observed for the WHODAS-2.0 across duration groups (Kruskal Wallis p=0.0001). Within the WHODAS-2.0, with increasing duration a significant increase was seen for the Life Activities domain (Kruskal Wallis p=0.00001) and the Participation domain (Kruskal Wallis p=0.001). Discussion and conclusions: Using the WHODAS 2.0 as a widely validated measure of self-reported difficulty in the performance of routine activities, pwMND reported significant difficulties in every domain, which varied by type of disease onset and worsened with longer survival. Comparing the weighted total to world population norms, over 90% of the world population would score better than the mean total WHODAS-2.0 score for pwMND (1).