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Neuromuscul Disord. 2018 Nov;28(11):938-946. doi: 10.1016/j.nmd.2018.09.003. Epub 2018 Sep 19.

Experiences with bariatric surgery in patients with facioscapulohumeral dystrophy and myotonic dystrophy type 1: A qualitative study.

Author information

1
Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.
2
Department of Rehabilitation, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.
3
Patient Organization for Muscular Disease Spierziekten Nederland, Baarn, the Netherlands.
4
Department of Surgery, Máxima Medical Center, Veldhoven, the Netherlands.
5
Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands; Department of Neurology, Amsterdam University Medical Centre, Amsterdam, The Netherlands.
6
Department of Occupational therapy, HAN University of Applied Sciences, Nijmegen, the Netherlands.
7
Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands. Electronic address: Nicol.Voermans@radboudumc.nl.

Abstract

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.

KEYWORDS:

Bariatric surgery; Facioscapulohumeral dystrophy; Myotonic dystrophy type 1; Obesity; Overweight; Qualitative research

PMID:
30342904
DOI:
10.1016/j.nmd.2018.09.003
[Indexed for MEDLINE]

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