About the study
Swallowing and speech problems are common and progressive in nature in children with neuromuscular disorders (NMD), which can lead to reduced participation in society. Children with NMD often receive speech language therapy. This therapy typically focuses on compensation strategies, such as avoiding certain foods or speaking more slowly. Additionally, there are options for muscle and function training, but little is known about the effectiveness of these treatments. This study investigates whether intensive speech language therapy, focusing on articulation, swallowing and training of the muscles in the mouth and throat area, can stabilize or reduce swallowing and speech problems in 50 children with Duchenne muscular dystrophy (DMD) and myotonic dystrophy type 1 (DM1).
A unique aspect of this study is that, in addition to assessing the impact of intensive speech language therapy on symptoms, ultrasound imaging of the oral muscles is used to determine the effects of the training on muscle quality. In addition, the qualitative part of the study investigates how children, parents, and speech and language therapists experience the treatment and what improvements they suggest, in order to further optimize the therapy.
For whom?
The target population consists of children and adolescents aged 5 to 18 years with a genetically confirmed diagnosis of Duchenne muscular dystrophy (DMD) or myotonic dystrophy type 1 (DM1), who are followed annually at the Radboudumc Expertise Center for Neuromuscular Diseases (Amalia Children’s Hospital). The developmental age must be above 5 years. In addition, there must be increased echogenicity of one or more muscles of the submental muscles, the masticatory muscles, or the tongue. For participation in the speech intervention, dysarthria must be present. Children are excluded if comorbidities are present that may cause speech or swallowing problems, such as a central neurological disorder.
Treatment
The speech and language therapy intervention consists of 8 weeks of intensive treatment, followed by 10 months of maintenance training, with assessments conducted before (T0), immediately after (T1), and 10 months after the intervention (T2). Children receive therapy twice weekly from a speech and language therapist in a rehabilitation center or primary care setting, with coaching and supervision from Radboudumc. Home practice is carried out together with parents/caregivers using the PhysiApp by Physitrack. The treatment is patient-specific and may include articulation training, chewing and swallowing training, and exercises targeting the oral and pharyngeal muscles. In addition, a subset of children, parents, and speech and language therapists participate in the qualitative component of the study through interviews, a focus group, and questionnaires, to gain insight into their experiences and ways to further improve the therapy.
Questions and registration
If you would like to participate in this study, please discuss this with your treating physician. Your physician can assess whether you are eligible and then refer you. You can also contact your treating physician if you have any questions.
Important data
- Recruitment closes: June 1, 2027
- Targeted end date: June 1, 2028
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