Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis
- PMID: 32179482
- DOI: 10.1016/j.msard.2020.102046
Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis
Abstract
Introduction: In Multiple Sclerosis (MS), withdrawal from employment is a critical problem. This study explores relationships between disease characteristics, work difficulties, health-related quality of life, depression, and stigma and how these factors affect employment status.
Methods: A multicenter, non-interventional, cross-sectional study was conducted in adults with relapsing-remitting MS (RRMS) and primary progressive MS (PPMS). Patient-reported questionnaires included: 23-item Multiple Sclerosis Work Difficulties Questionnaire, 29-item Multiple Sclerosis Impact Scale, Stigma Scale for Chronic Illness, and Beck Depression Inventory-Fast Screen.
Results: A total of 199 individuals (mean age = 43.9 ± 10.5 years, 60.8% female, 86.4% with RRMS) participated in the study. Mean time from diagnosis was 9.6 ± 7.2 years and median Expanded Disability Status Scale score was 2.0 (interquartile range: 1.0-3.5). Employment rate was 47.2% (n = 94). Mean physical and psychological MSIS-29 impact sub-scores were 40.38 ± 17.1 and 20.24 ± 7.8, respectively. Forty patients (19.9%) had at least one SSCI-8 item with a score of 4 or 5, suggesting the presence of stigma often or always. Eighty-one patients (40.7%) were depressed and 25 (12.6%) had moderate-to-severe depression. Work difficulties were higher in those with worse functional status, a diagnosis of PPMS, and lower educational levels. Employed participants had lower perceptions of stigma and depressive symptoms than those not employed. Higher perceptions of stigma were also strongly linked to higher physical and psychological impact on health-related quality of life and greater work difficulties. Depressive symptoms were also strongly related to work-related problems.
Conclusions: Work difficulties, stigma and poor quality of life are common in MS patients, even in a population with low physical disability. Evaluation of these dimensions in clinical practice would allow the development of targeted rehabilitation and specific work plans for MS employers.
Keywords: Depression; Employment; Health-related quality of life; Multiple sclerosis; Patient-reported outcomes; Stigma; Work difficulties.
Copyright © 2020 Elsevier B.V. All rights reserved.
Conflict of interest statement
Declaration of Competing Interest This study was funded by the Medical Department of Roche Farma Spain (ML39424). N.M. and J.M. are employees of Roche Farma Spain. None of the other authors report any conflict of interest. The abstract of this paper was presented at the 34th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) as an eposter presentation with interim findings (10–12 October 2018, Berlin, Germany). Qualified researchers may request access to individual patient level data through the clinical study data request platform (www.clinicalstudydatarequest.com). Further details on Roche's criteria for eligible studies are available here (https://clinicalstudydatarequest.com/Study-Sponsors/Study-Sponsors-Roche.aspx). For further details on Roche's Global Policy on the Sharing of Clinical Information and how to request access to related clinical study documents, see here: (https://www.roche.com/research_and_development/who_we_are_how_we_work/clinical_trials/our_commitment_to_data_sharing.htm).
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