Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis
Maurino, J and Martinez-Gines, ML and Garcia-Dominguez, JM and Solar, MD and Carcelen-Gadea, M and Ares-Luque, A and Ballabriga, J and Navarro-Canto, L and Medrano, N and Honan, CA, Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis, Multiple Sclerosis and Related Disorders, 41 Article 102046. ISSN 2211-0348 (2020) [Refereed Article]
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 healthrelated quality of life and greater work difficulties. Depressive symptoms were also strongly related to workrelated 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.