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
To date, speech and language therapy has mainly focused on compensating for speech and swallowing difficulties, for example by reducing speaking rate or modifying dietary intake. In physiotherapy, low-intensity strength training is commonly used for people with neuromuscular disorders. Little is currently known about the feasibility and potential outcomes of training the muscles involved in speech and swallowing. This is particularly true for the muscles of the mouth and throat (called ‘orofacial muscles’), which differ in composition from the muscles of the arms and legs.
Aim
The aim of this study is to investigate the feasibility and practicality of intensive speech and language therapy supported by strength training for adults with myotonic dystrophy type 1 (DM1), oculopharyngeal muscular dystrophy (OPMD), and sporadic inclusion body myositis (sIBM). In addition, the study will explore the preliminary outcomes of the intervention on speech, swallowing, and muscle function, as well as the experiences of participants and speech and language therapists with the treatment programme.
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 the feasibility and practicability of two months of intensive speech and language therapy, followed by ten months of maintenance exercises, in adults with neuromuscular disorders. In addition, preliminary outcomes related to speech and swallowing will be evaluated. The project consists of two sub-studies: one focusing on speech in myotonic dystrophy type 1 (DM1) and one focusing on swallowing in 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 Römkens through amber.romkens@radboudumc.nl.
Important dates
- Recruitment begins: October 2026
- Recruitment ends: October 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