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

Van de Geest-Buit W. A.; Rasing N. B.; Mul K.Deenen J. C. W.Vincenten S. C. C.Siemann ILanser A.Groothuis J. T.van Engelen B. G.Custers J. A. E.Voermans N. C.

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

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

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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.

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《Disability and rehabilitation.》 |2023年第15期|2507-2516|共10页
作者
Van de Geest-Buit W. A.; Rasing N. B.; Mul K.Deenen J. C. W.Vincenten S. C. C.Siemann ILanser A.Groothuis J. T.van Engelen B. G.Custers J. A. E.Voermans N. C.;
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作者单位

Radboud University Nijmegen,Radboud Univ Nijmegen;

Radboud Inst Hlth Sci,Radboud Univ Nijmegen;

Patient Representat & Chairman FSHD Advocacy Grp,Patient Org Muscular Dis Spierziekten NederlandDonders Inst Brain Cognit & Behav,Radboud Univ Nijmegen;

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正文语种英语
中图分类康复医学;
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Facioscapulohumeral muscular dystrophy; FSHD; facial weakness; psychosocial effects; counseling; QUALITY-OF-LIFE; HOSPITAL ANXIETY; VALIDATION; PARALYSIS; ADULTS; SCALE; EXPERIENCES; INSTRUMENT; BEHAVIOR; HADS;

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

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