Quality of Life of People With Neuromuscular Diseases: The Role of Stigma

INTRODUCTION/AIMS: Stigma is thought to have a profound impact on quality of life (QoL) among people with neuromuscular diseases (NMD), but empirical evidence is limited. This study sought to explore associations of enacted stigma (social exclusion) and felt stigma (shame, fear of exclusion) with QoL.

METHODS: A cross-sectional survey was administered among NMD patients. The survey assessed (a) general QoL domains (physical/mental QoL); (b) specific QoL domains (emotional distress, satisfaction with participation); (c) enacted/felt stigma; (d) psychological factors (disease acceptance, self-compassion, self-criticism, self-esteem); (e) clinical factors (independence in activities of daily living, physical/mental comorbidities); and (f) socio-demographic factors (gender, age). Associations of enacted and felt stigma with all four QoL domains were analyzed using hierarchical multivariable linear regression analyses, adjusting for socio-demographic, clinical, and psychological factors.

RESULTS: Data of 261 patients (49% female, aged 18-96 years) were included in the analyses. Significant but weak associations of felt stigma with physical QoL (β = -0.36), mental QoL (β = -0.26), emotional distress (β = 0.27) and satisfaction with participation (β = -0.36) were observed. Enacted stigma was significantly weakly associated with three out of four QoL domains (β: -0.18 to -0.24), with the exception of emotional distress. Associations were virtually unchanged by adjustment for socio-demographic and clinical factors, yet attenuated after adjustment for psychological variables.

DISCUSSION: Our findings suggest that higher levels of stigma, most notably felt stigma, are associated with a lower QoL and emphasize the importance of addressing psychological factors in the monitoring and treatment of NMD patients.