About the study
Difficulties with swallowing (dysphagia) and speaking (dysarthria) are common and progressive in children with muscle disorders. Dysphagia can lead to a decline in growth, an increased risk of aspiration (pneumonia), and possibly tube feeding. In addition, problems with chewing or swallowing can make mealtimes stressful. Dysarthria can hinder a child’s ability to communicate, thereby limiting their ability to participate effectively in family, school, and social activities. Children with a muscle disorder often receive speech-language therapy that focuses on compensatory strategies, such as avoiding certain foods or speaking more slowly. There are also options for training muscles and functions, but their effectiveness is still unknown. This study investigates whether intensive speech-language therapy—which trains articulation, swallowing, and the muscles in the mouth and throat—leads to the stabilization of swallowing and speech problems in 50 children with Duchenne muscular dystrophy (DMD) and myotonic dystrophy type 1 (MD1).
What makes this study unique is that, in addition to examining the treatment’s effect on symptoms, it also uses ultrasound imaging of the muscles of the mouth to determine how training affects muscle quality. Furthermore, the qualitative component of the study examines how children, parents, and speech-language pathologists experience the treatment and what areas for improvement they identify, with the aim of further optimizing the therapy.
For whom?
The target population consists of children and adolescents aged 5 to 18 with a genetically confirmed diagnosis of Duchenne muscular dystrophy (DMD) or myotonic dystrophy type 1 (MD1), who undergo annual follow-up at the Radboudumc Center of Expertise for Muscle Diseases (at the Amalia Children’s Hospital). The developmental age must be greater than 5 years. In addition, there must be increased echogenicity of one or more muscles of the floor of the mouth, masticatory muscles, or tongue. Dysarthria must be present for speech intervention. Children are excluded if they have comorbidities that could cause speech or swallowing problems, such as a central nervous system disorder.
Treatment and interviews
The speech-language therapy intervention consists of 8 weeks of intensive speech-language therapy, followed by 10 months of maintenance training, with assessments before (T0), immediately after (T1), and 10 months after the intervention (T2). During the first 8 weeks, the children receive treatment twice a week from a speech-language pathologist at the rehabilitation center or in primary care, with coaching and supervision from Radboudumc. In addition, they practice at home three times a week, possibly together with their parents. This is done using Physitrack’s PhysiApp, an app that explains the exercises through instructions and videos. The treatment is individually tailored and may include training in articulation, chewing and swallowing functions, and the muscles in the mouth and throat area. In addition, a selection of children, parents, and speech-language pathologists will participate in the qualitative component of the study through interviews, in order to gain insight into their experiences and identify areas for improvement in the therapy.
Questions and registration
If you would like to participate in this study, please discuss it with your treating physician. Your doctor can assess whether you are eligible and then refer you. You can also contact your treating physician with any questions. Would you like more information about the study or would you like to sign up? If so, please contact the researcher, Karlijn Beckers, at karlijn.beckers@radboudumc.nl.
Important data
- Recruitment begins: October 2026
- Recruitment ends: October 2027
Links
- ZonMw - Intensive speech therapy to address bulbar problems in children with neuromuscular disorders
Names of researchers
Head researcher:
- Karlijn Beckers, researcher in training, Radboudumc
Supervisors:
- Dr. Marloes Lagarde, speech therapist and senior researcher, Radboudumc
- Prof. Dr. Jan Groothuis, rehabilitation physician, Radboudumc
- Dr. Saskia Houwen-van Opstal, pediatric rehabilitation physician, Radboudumc
- Dr. Corrie Erasmus, pediatric neurologist, Radboudumc