Experiences with bariatric surgery in patients with facioscapulohumeral dystrophy and myotonic dystrophy type 1: A qualitative study
Introduction
Overweight and obesity are an increasing problem in patients with neuromuscular disorders, of which myotonic dystrophy 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 excess of weight, experiencing the overweight as an extra burden on their (already weak) muscles. When lifestyle interventions have not been effective, bariatric surgery has proven to support obese persons to lose weight [1]; however, the experience with bariatric surgery in patients with neuromuscular 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 overweight and obesity as abnormal or excessive fat accumulation that may impair health, defined as body mass index (BMI) ≥ 25 kg/m2 for overweight and ≥ 30 kg/m2 for obesity [2]. Overweight and obesity are reported in, respectively, 44–48% and 10–25.7% of DM1 patients [3], [4], [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 Prevalence numbers of overweight and obesity in FSHD are unpublished; in our FSHD cohort this is 38% and 9%, respectively [7].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 occurrence of overweight and obesity in FSHD and DM1, of which physical inactivity due to muscle weakness is the most important [8]. Other contributing lifestyle factors should be considered, as mildly impaired patients also have overweight and obesity [9]. Myotonic dystrophy is associated with features of the metabolic syndrome, including insulin resistance, increased body fat mass and hypertriglyceridemia [9]. In this light, individuals with neuromuscular disorders are also likely to have a higher risk for cardiovascular and metabolic disease [10]. Furthermore, patients with DM1 often have poor diet choices due to low socioeconomic status and/or cognitive limitations, leading to a high intake of carbohydrates and fat [8], [9]. Theoretically, alteration of these lifestyle factors may be an opportunity to achieve weight loss. However, these alterations are difficult in patients with FSHD and DM1: increasing physical exercise is difficult due to muscle weakness or cardiac and respiratory comorbidity, and maintaining a low caloric, balanced diet is often hard to manage for patients with DM1 [1].
The high prevalence of overweight and obesity in patients with FSHD and DM1, its burden for patients, the elevated risk of metabolic disease and the difficulties altering lifestyle call for more attention to bariatric surgery as a treatment option. The only case of bariatric surgery in neuromuscular disorder that has been published [1] reports a 34-year old woman with DM1 that underwent a laparoscopic gastric bypass. She achieved a significant weight loss after surgical treatment without complications. It was briefly noted that her fatigue reduced and her participation and quality of life improved. The aim of this qualitative study is to obtain insight into the perspectives and experiences of patients, relatives and clinicians on the outcomes, as well as on the effects and risks of bariatric surgery. This will improve counseling of neuromuscular patients that consider bariatric surgery.
Section snippets
Design of the study
To obtain insight of experiences a qualitative study is the most appropriate study design [11]. This study was conducted between June and September 2017, and consisted of in-depth interviews with patients, their relatives and clinicians (bariatric surgeons and general practitioners). Semi-structured interviews were used for data collection [12]. We used a qualitative descriptive design [13], which is useful for evaluating patients’, relatives’ and clinicians’ views on a program or topic, and
Results
Fourteen interviews were conducted (three FSHD patients, three DM1 patients, four relatives, three bariatric surgeons and one general practitioner). Patients, five women and one man, were aged between 31 and 47 years old. The follow-up after bariatric surgery ranged from one to seven years (see Table 2 for description of the patient group). One DM1 patient was on non-invasive nocturnal ventilation, and one DM1 patient used CPAP for sleep apnea.
Surgery was performed in four different clinics,
Discussion
This is the first qualitative study on the experiences with bariatric surgery of patients with FSHD and DM1, their relatives and clinicians, as well as on the outcome, effects and risks of bariatric surgery in patients with FSHD and DM1. Overweight caused a physical and mental burden to patients with FSHD and DM1. To free themselves from this burden, patients considered bariatric surgery as their last option. Bariatric surgery in patients with FSHD and DM1 is not the same as in patients without
Conclusions
This qualitative study among patients with FSHD and DM1, their relatives, bariatric surgeons and general practitioner shows that bariatric surgery is feasible in patients with FSHD and DM1. It has beneficial physical and mental effects for most patients, but does not influence the course of the neuromuscular disorder. Patients with FSHD and DM1 require specific precautions and a suitable follow-up.
Ethics approval and consent to participate
The study was approved by the Medical Ethics Committee of Radboud University Medical Center (registration number: 2017-3422). Of all interviewees consent to participate was obtained.
Availability of data and materials
The data generated and analyzed during the current study are available from the corresponding author on reasonable request.
Competing interests
The authors declare that they have no competing interests.
Acknowledgment
Not applicable.
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