Monitoring progressive dysphagia in DM1 using ultrasound. Version 0.6

• Research type

  Research Study

• Full title

  Monitoring Dysphagia Progression in Myotonic Dystrophy Type 1: Insights from Ultrasound Swallowing Measures.

• IRAS ID

  356004

• Contact name

  Joan Ma

• Contact email

  jma@qmu.ac.uk

• Sponsor organisation

  Queen Margaret University, Edinburgh

• Duration of Study in the UK

  0 years, 11 months, 31 days

• Research summary

  Swallowing difficulties are common in people living with Myotonic Dystrophy type 1 (plwDM1), and can cause coughing, choking, and chest infections. As DM1 is a progressive disease, monitoring swallowing difficulties is important to facilitate early speech and language therapy (SLT) intervention and avoid negative consequences such as pneumonia. Traditional assessments, like video x-rays and endoscopes, are invasive and involve radiation meaning they tend to be used reactively, i.e. once swallowing difficulties have started. Ultrasound evaluation of swallowing (USES) offers a minimally invasive, repeatable, and portable alternative. This means it is a more accessible assessment which could be regularly repeated to proactively monitor swallowing and provide earlier support and access to speech and language therapy input.
  There is currently a lack of information about the progression of swallowing problems in DM1 and the appropriate tools to monitor plwDM1s swallowing. This research will monitor the swallowing of plwDM1 at three timepoints over six months, using clinical assessments, USES and muscle ultrasound to understand changes in functional swallowing, objective swallowing measurements and muscle composition. This will provide insight into both the underlying causes of dysphagia and its symptoms. Furthermore, a subset of participants will be invited to have an interview to share their experiences of the ultrasound assessments and how their swallowing is currently being monitored. These interviews will provide insight into current practice, and plwDM1s views on the use of ultrasound to monitor their swallowing. These insights are vital when considering adding ultrasound to the SLT assessment toolkit and can help support clinicians to make informed recommendations for managing swallowing problems with plwDM1.
  

• REC name

  London - City & East Research Ethics Committee

• REC reference

  25/LO/0266

• Date of REC Opinion

  21 Mar 2025

• REC opinion

  Favourable Opinion