Non-invasive ventilation in patients with muscular dystrophies

• Research type

  Research Study

• Full title

  Use of domiciliary ventilation in patients with muscular dystrophies: A qualitative study

• IRAS ID

  196523

• Contact name

  Dipansu Ghosh

• Contact email

  dipansughosh@nhs.net

• Sponsor organisation

  St James's University Hospital

• Duration of Study in the UK

  1 years, 2 months, 7 days

• Research summary

  Muscular dystrophies (MD) including Duchenne Muscular dystrophy is a reasonably common condition affecting mainly boys at an early age causing muscle weakness and almost invariably affects the diaphragm( breathing muscle). The use of non-invasive ventilation (NIV), a device to help breathing using a mask, in patients with MD has improved survival in recent decades. There is not enough data around its use in this population in terms of quality of life, patient experience, problems faced by them, patient’s preference , etc.

  This study will be exploring the use of NIV in patients with MD. The project will perform a qualitative analysis into patients' thoughts, opinions and experiences of NIV.

  The key questions this study hopes to address are:
  How is NIV currently being used by the MD population?
  What do NIV users think about NIV and what are the common problems faced by them?
  What do their carers think about NIV ?
  
  This study will involve current MD patients under the respiratory medicine team at SJUH. The study will consist of qualitative analysis of semi-structured interviews with MD patients who are currently on treatment with NIV. Participants will be invited for interview by the respiratory medicine team at SJUH during routine consultation. They will then be asked questions regarding ventilation during a short interview with members of the research team. Qualitative data will be transcribed and analysed. All answers will be annonymised and parameters will be set by which participants can withdraw from the study.

  One of the main carer to a patient who has consented to take part in the study will also be approached for an interview at the same time following the main interview using semi-structured approach.

• REC name

  West of Scotland REC 5

• REC reference

  16/WS/0044

• Date of REC Opinion

  2 Mar 2016

• REC opinion

  Further Information Favourable Opinion