Anke Lanser
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View article: The participants’ perspective on facioscapulohumeral muscular dystrophy trials in The Netherlands – A qualitative study
The participants’ perspective on facioscapulohumeral muscular dystrophy trials in The Netherlands – A qualitative study Open
Background: Facioscapulohumeral muscular dystrophy (FSHD) is a hereditary muscle disease without an available cure. The first trials with potentially disease-modifying therapies have started, including a phase ll open-label study and a pha…
View article: Quality of life and support needs in children, adolescents, and young adults with facioscapulohumeral dystrophy, a mixed-method study
Quality of life and support needs in children, adolescents, and young adults with facioscapulohumeral dystrophy, a mixed-method study Open
Quality of life in childhood FSHD is diminished caused by their physical limitations, altered appearance, fear of social rejection, and uncertainty of the disease progression in the future. A fear of social rejection most likely contribute…
View article: Treatment Approaches for Altered Facial Expression: A Systematic Review in Facioscapulohumeral Muscular Dystrophy and Other Neurological Diseases
Treatment Approaches for Altered Facial Expression: A Systematic Review in Facioscapulohumeral Muscular Dystrophy and Other Neurological Diseases Open
Background: Facial weakness is a key feature of facioscapulohumeral muscular dystrophy (FSHD) and may lead to altered facial expression and subsequent psychosocial impairment. There is no cure and supportive treatments focus on optimizing …
View article: Psychosocial functioning in patients with altered facial expression: a scoping review in five neurological diseases
Psychosocial functioning in patients with altered facial expression: a scoping review in five neurological diseases Open
This review showed that patients with altered facial expression in four of five included neurological diseases had reduced psychosocial functioning. Future research recommendations include studies on observers' judgements of patients durin…
View article: Facing facial weakness: psychosocial outcomes of facial weakness and reduced facial function in facioscapulohumeral muscular dystrophy
Facing facial weakness: psychosocial outcomes of facial weakness and reduced facial function in facioscapulohumeral muscular dystrophy Open
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 younge…
View article: Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study
Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study Open
Patients would like the expert teams to shed more light on effective skill training and psychosocial support, especially for the younger patient group. A multidisciplinary approach is needed in addition to programs focusing on the individu…