Experienced stigmatization reduced quality of life of patients with a neuromuscular disease: a cross-sectional study

Abstract

Objective: To examine the influence of stigma on the quality of life of patients with a neuromuscular disease. Design: Cross-sectional postal survey. Setting: Outpatient clinic of the Department of Neurology, University Hospital Groningen, the Netherlands. Subjects: Patients diagnosed with a neuromuscular disease. Measures: The Stigma Scale for Chronic Illness, the World Health Organization Quality of Life – abbreviated version questionnaires and some background and disease-related questions. The Stigma Scale for Chronic Illness was translated into Dutch according to international guidelines. The impact of stigma on quality of life was estimated using hierarchical multiple regression analysis after controlling for the extent of limitations and patient characteristics. Results: In total 235 patients (75% response rate) were diagnosed with neuromuscular disease and represented all four categories of the approximately 600 neuromuscular diseases. Most patients (86%) reported self stigma, while 64% reported to experience enacted stigma. Experienced quality of life was moderate to good. Stigma contributed to a unique and substantial extent to all domains of quality of life: explained variance for the impact of stigma on quality ranged from 0.13 (social relations) to 0.34 (physical functioning) for self stigma and from 0.09 (social relations) to 0.11 (physical and psychological health, and quality of the environment). Conclusion: Self stigma was a stronger predictor for poorer quality of life compared with enacted stigma. In other words: patients suffered more from shame and fear for discrimination (self stigma) than from the really experienced discrimination and exclusion (enacted stigma).