ARTICLE IN PRESS JID: NMD [m5+;October 17, 2018;7:53] Available online at www.sciencedirect.com Neuromuscular Disorders xxx (xxxx) xxx www.elsevier.com/locate/nmd Experiences with bariatric surgery in patients with facioscapulohumeral dystrophy and myotonic dystrophy type 1: A qualitative study Esther E.D.H. Abel a , Edith H.C. Cup b , Anke Lanser c , Wouter K.G. Leclercq d , Joost Raaphorst a,e , George W. Padberg a , Ton Satink f , Nicol C. Voermans a,* a Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands b Department of Rehabilitation, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands c Patient Organization for Muscular Disease Spierziekten Nederland, Baarn, the Netherlands d Department of Surgery, Máxima Medical Center, Veldhoven, the Netherlands e Department of Neurology, Amsterdam University Medical Centre, Amsterdam, The Netherlands f Department of Occupational therapy, HAN University of Applied Sciences, Nijmegen, the Netherlands Received 12 July 2018; received in revised form 26 August 2018; accepted 12 September 2018 Available online xxx 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. © 2018 Elsevier B.V. All rights reserved. Keywords: Facioscapulohumeral dystrophy; Myotonic dystrophy type 1; Obesity; Overweight; Bariatric surgery; Qualitative research. 1. Introduction Overweight and obesity are an increasing problem in pa- tients with neuromuscular disorders, of which myotonic dys- trophy type 1 (DM1) and facioscapulohumeral dystrophy (FSHD) are the two most common types in adulthood. In consultations we often hear that patients suffer from the ex- cess of weight, experiencing the overweight as an extra bur- den on their (already weak) muscles. When lifestyle interven- tions have not been effective, bariatric surgery has proven to support obese persons to lose weight [1]; however, the expe- rience with bariatric surgery in patients with neuromuscular * Corresponding author. E-mail address: Nicol.Voermans@radboudumc.nl (N.C. Voermans). disorders is limited to a single case report [1]. This makes it difficult for neurologists to adequately advise patients on the pros and cons of bariatric surgery in neuromuscular disorders such as FSHD and DM1. The World Health Organization (WHO) describes over- weight and obesity as abnormal or excessive fat accumu- lation that may impair health, defined as body mass index (BMI) ≥ 25 kg/m 2 for overweight and ≥ 30 kg/m 2 for obesity [2]. Overweight and obesity are reported in, respec- tively, 44–48% and 10–25.7% of DM1 patients [3–5]; in our cohort of DM1 patients this is 59% and 19%, respectively [6]. Prevalence numbers of overweight and obesity in FSHD are unpublished; in our FSHD cohort this is 38% and 9%, respectively [7]. Several factors may play a role in the oc- currence of overweight and obesity in FSHD and DM1, of https://doi.org/10.1016/j.nmd.2018.09.003 0960-8966/© 2018 Elsevier B.V. All rights reserved. Please cite this article as: E.E.D.H. Abel et al., Experiences with bariatric surgery in patients with fa- cioscapulohumeral dystrophy and myotonic dystrophy type 1: A qualitative study, Neuromuscular Disorders (2018), https://doi.org/10.1016/j.nmd.2018.09.003