Facing facial weakness: psychosocial outcomes of facial weakness and reduced facial function in facioscapulohumeral muscular dystrophy

Purpose To assess the psychosocial outcomes of facial weakness in facioscapulohumeral muscular dystrophy (FSHD). Materials and methods A cross-sectional survey study. The severity of facial weakness was assessed by patients (self-reported degree of facial weakness) and by physicians (part I FSHD clinical score). Questionnaires on facial function, psychosocial well-being, functioning, pain, and fatigue were completed. Regression analyses were performed to explain variance in psychosocial outcomes by demographic and disease variables. Results One hundred and thirty-eight patients participated. They reported mild to moderate psychological distress, no to mild fear of negative evaluation, and moderate to good social functioning. However, patients with severe self-reported facial weakness scored lower in social functioning. Patients with more facial dysfunction experienced more fear of negative evaluation and lower social functioning. Furthermore, younger age, presence of pain, fatigue, walking difficulty, and current or previous psychological support were associated with lower psychosocial outcomes. Overall, patients report moderate to good psychosocial functioning in this study. The factors contributing to lower psychosocial functioning are diverse. Conclusions A multidisciplinary, personalized approach, focusing on coping with physical, emotional, and social consequences of FSHD is supposed to be helpful. Further research is needed to assess the psychosocial outcomes of facial weakness in younger patients.

Automated summary

This study aimed to evaluate the psychosocial outcomes of facial weakness in facioscapulohumeral muscular dystrophy (FSHD). The findings showed that patients reported mild to moderate psychological distress, fear of negative evaluation, and social functioning. However, severe self-reported facial weakness was associated with lower social functioning. Patients with more facial dysfunction experienced higher fear of negative evaluation and lower social functioning. Younger age, presence of pain, fatigue, walking difficulty, and psychological support were also factors contributing to lower psychosocial outcomes. Overall, this study suggests that a multidisciplinary, personalized approach is needed to address the physical, emotional, and social consequences of FSHD.