About the study
Background
Being able to speak clearly and swallow food easily are essential daily activities. For people with a neuromuscular disease, this is not always evident, as muscle weakness in the face, tongue and throat can lead to speech problems (dysarthria) or swallowing difficulties (dysphagia).
Treatment
Until now, speech therapy has mainly focused on compensating for speech and swallowing problems, for example by slowing down speaking rate or adjusting food consistencies. In physiotherapy, people with neuromuscular diseases perform light strength training. It is not yet known whether training of muscles involved in speech and swallowing is effective, because the muscles in the mouth and throat (the ‘orofacial’ muscles) differ in composition from those in the arms or legs.
Aim
The aim of this study is to determine whether intensive speech therapy followed by maintenance exercises improves speech, swallowing, and muscle quality in adults with a neuromuscular disease. The study focuses specifically on adults with genetically confirmed myotonic dystrophy type 1 (DM1), ocularpharyngeal muscle dystrophy (OPMD), and inclusion body myositis (IBM) who suffer from dysarthria and/or dysphagia.
For whom?
The criteria for participation are as follows:
- age above 18 years;
- (genetically) confirmed DM1, OPMD, or IBM;
- the presence of dysarthria and/or dysphagia.
Participation is excluded in the presence of:
- insufficient physical or cognitive capacity to engage in the treatment program;
- other conditions that may result in speech and/or swallowing impairments.
The study
The project aims to investigate whether two months of intensive speech therapy, followed by ten months of maintenance exercises, has a positive effect on speech and swallowing in adults with neuromuscular disorders. The project comprises two substudies: one focusing on speech in individuals with myotonic dystrophy type 1 (DM1), and one focusing on swallowing in individuals with oculopharyngeal muscular dystrophy (OPMD) and inclusion body myositis (IBM). The structure of each substudy is outlined below.
Substudy 1:
- Functional articulation training and tongue strength training.
- During the intensive two-month treatment period, exercises are performed five times a week, including two to three sessions per week with a speech therapist and the remaining sessions independently.
- During the maintenance phase, participants complete independent exercises three times per week for ten months, with low frequency monitoring by a speech therapist.
- Three assessment points:
- Prior to the intensive treatment phase;
- After the intensive treatment phase (2 months);
- After the maintenance phase (12 months).
- The total study duration is one year.
Sub-study 2:
- Functional swallowing training and expiratory muscle strength training.
- During the intensive two-month treatment period, exercises are performed five times a week, including two to three sessions per week with a speech therapist and the remaining sessions independently.
- During the maintenance phase, participants complete independent exercises three times per week for ten months, with low frequency monitoring by a speech therapist.
- Three assessment points:
- Prior to the intensive treatment phase;
- After the intensive treatment phase (2 months);
- After the maintenance phase (12 months).
- The total study duration is one year.
Questions and registration
Would you like more information about the study? Or would you like to register? Please contact Amber Romkens through amber.romkens@radboudumc.nl.
Important dates
- Recruitment closes on June 1, 2027.
- The intended end date of the study is May 30, 2029.
Links
Names of researchers
- Amber Römkens, PhD candidate, Radboudumc
- Dr. Simone Knuijt, speech therapist/speech-language pathologist, co-supervisor, Radboudumc
- Prof. Jan Groothuis, rehabilitation physician/professor of rehabilitation medicine, supervisor, Radboudumc
- Dr. Karlien Mul, neurologist, co-supervisor, Radboudumc
- Dr. Sanne Diepeveen, speech therapist/university lecturer, co-supervisor, Arnhem-Nijmegen University of Applied Sciences