INTENS-V

Intensive training of speech and swallowing in adults with a neuromuscular disease

Background: Dysarthria and dysphagia are common symptoms in myotonic dystrophy type 1 (DM1), oculopharyngeal muscular dystrophy (OPMD), and inclusion body myositis (IBM). Although patients are encouraged to engage in physical exercise, speech therapy in these conditions has traditionally focused on compensatory strategies. Because orofacial muscles differ in composition from skeletal muscles, the effect of intensive training on orofacial muscle function and quality remains unclear. This study investigates whether two months of intensive speech and swallowing training, followed by ten months of maintenance exercises, can improve speech and swallowing outcomes. The project comprises two sub-studies: (1) articulation training in DM1, and (2) functional swallowing training in OPMD and IBM.

Hypothesis: The expectation for both sub-projects is that intensive articulation and swallowing training will have a positive effect on speech intelligibility, communicative participation, and swallowing function. The overarching expectation is that these effects will be maintained through follow-up exercises, while a decline in orofacial muscle quality will be prevented. In a separate qualitative sub-study, the experiences of participants and speech-language therapists will be systematically documented and disseminated.

Approach: The aim is to include 25 adults with genetically confirmed DM1 and 25 adults with genetically confirmed IBM or OPMD. Participants with DM1 will receive articulation exercises with tongue-force training. Participants with OPMD and IBM will receive functional swallowing training consisting of (chewing and) forcefully swallowing food textures that are challenging for the individual. Additionally, they will undergo Expiratory Muscle Strength Training (EMST), which targets and strengthens exhalation force, and may also provide indirect training for the swallowing muscles. Exclusion criteria are insufficient physical or cognitive capacity to participate and co-morbidity that affects speaking or swallowing.

Expected results: Given the exploratory nature of this study, several outcome measures are included. For sub‑study 1, speech intelligibility is the primary outcome measure, with tongue strength and communicative participation included as additional outcomes. For sub‑study 2, the maximum expiratory pressure (MEP) is the primary outcome measure, and the most difficult-to-swallow consistency is also assessed. In all participants, orofacial muscle ultrasonography is used to evaluate the effect of the training on muscle quality.

Awarded grant: €275.000