Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis

• Published in: Multiple sclerosis and related disorders Vol. 41; p. 102046
• Main Authors: Maurino, Jorge, Martínez-Ginés, María L., García-Domínguez, José M., Solar, María D., Carcelén-Gadea, María, Ares-Luque, Adrián, Ballabriga, Jordi, Navarro-Cantó, Laura, Medrano, Nicolás, Honan, Cynthia A.
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 01-06-2020
• Subjects: Adult; Cross-Sectional Studies; Depression; Depression - psychology; Disabled Persons - psychology; Employment; Employment - psychology; Female; Health-related quality of life; Humans; Male; Middle Aged; Multiple sclerosis; Multiple Sclerosis - psychology; Patient-reported outcomes; Quality of Life - psychology; Social Stigma; Stigma; Work difficulties; Health-related quality of life; Multiple sclerosis; Employment; Stigma; Work difficulties; Depression; Patient-reported outcomes
• ISSN: 2211-0348; 2211-0356
• DOI: 10.1016/j.msard.2020.102046

•Unemployment is a critical problem in Multiple Sclerosis.•Stigma and work-related problems are common even in patients with low disability.•The assessment of patient perspectives may provide key complementary information.
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.
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.
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.
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.