Browsing Han Publications by Author "Lanser, A"

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Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study
Sezer, S ; Cup, E.H.C. ; Roets-Merken, LM ; Lanser, A ; Siemann, I ; Weikamp, JG ; Mul, K ; Engelen, BG van ; Satink, T. ; Voermans, NC
2021, Article / Letter to editor (Disability and Rehabilitation, (2021))Purpose This study focuses on the functional and psychosocial consequences of facial weakness of patients with facioscapulohumeral muscular dystrophy (FSHD) and how they manage their daily lives. Materials and methods We conducted a qualitative study. Sixteen FSHD patients with varying degrees of facial weakness were interviewed using a semi-structured interview guide. Data were analyzed using the constant comparison approach based on the Straussian Grounded Theory. Results Reduced facial expression affected different aspects of a participant's life, which is reinforced by fatigue. Particularly the younger participants described the confrontation with reduced facial expression as upsetting. The unpredictability of the progression of facial weakness makes many participants insecure and concerned. They generally tend to avoid discussing facial weakness with loved ones as well as with strangers. Conclusions 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 individual aspects of facial weakness. As the experienced psychosocial effect is not commonly equal to the objective degree of facial weakness, we recommend a tailored approach. Finally, these programs should point out the importance of the patient's own ingenuity.
Experiences with facial weakness in patients with facioscapulohumeral dystrophy: a qualitative study
Cup, Edith ; Sezer, S ; Lanser, A ; Mul, K ; Groothuis, JT ; Engelen, B.G.M. van ; Satink, T. ; Voermans, N
2019, Article / Letter to editor (Neuromuscular Disorders, vol. 29, (2019), pp. S52)
Experiences with bariatric surgery in patients with facioscapulohumeral dystrophy and myotonic dystrophy type 1: A qualitative study
Abel, EEDH ; Cup, Edith ; Lanser, A ; Leclercq, WKG ; Raaphorst, J ; Padberg, GW ; Satink, T. ; Voermans, N
2018, Article / Letter to editor (Neuromuscular Disorders, vol. 28, iss. 11, (2018), pp. 938-946)Overweight and obesity are common in patients with facioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1). Lifestyle change is often challenging for patients with neuromuscular diseases, especially to increase physical activity. When lifestyle changes have not been effective, bariatric surgery is a treatment option. However, very little is known about the benefits and risks in patients with neuromuscular disorders. This study therefore aims to obtain insight into the patients' perspectives and experiences, the outcome, effects and risks of bariatric surgery in these disorders. We performed a qualitative study, consisting of 14 in-depth interviews with six patients (three FSHD and three DM1; five women, one man; aged range 31-47 years), four relatives, three bariatric surgeons and one general practitioner. The study used a qualitative descriptive method. Four themes were formulated: (1) overweight as burden; (2) bariatric surgery as last option; (3) not your standard patient; and (4) a different life, a different me. This study shows that bariatric surgery has beneficial physical and mental effects for most patients with FSHD and DM1, and does not influence the muscular disease course. Bariatric surgery is feasible in patients with FSHD and DM1, but specific precautions and a suitable follow-up including tailored dietary and training advices are required. (C) 2018 Elsevier B.V. All rights reserved.

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