Home versus Hospital based NIV care in MND

  • Research type

    Research Study

  • Full title

    Home initiation and monitoring of non-invasive ventilation versus hospital-based care in people with Motor Neurone Disease: A Randomised Control Trial (RCT) and Qualitative Study

  • IRAS ID

    333762

  • Contact name

    Dariusz Wozniak

  • Contact email

    dariusz.wozniak@nhs.net

  • Sponsor organisation

    Royal Papworth Hospital NHS Foundation Trust

  • Duration of Study in the UK

    2 years, 5 months, 1 days

  • Research summary

    Non-invasive ventilation (NIV) is commonly offered to people with MND who have breathing difficulties. It improves their quality of life and can prolong life by 6 months or more. It is initially used at night and typically set up during a hospital admission. By the time that they develop respiratory failure and need to start NIV, however, most patients require wheelchairs or have other significant health problems. Repeated travel to hospitals is increasingly difficult with increasing disability. It is possible to start and monitor NIV treatment at home, which may be more convenient for selected patients, but starting NIV is a quite complex process. It is not known if home treatment is as safe and effective as hospital-based treatment.

    To answer this, we will recruit 60 patients with MND who have indications for NIV. They will be randomly allocated to a home-based treatment (home NIV set up plus home visits) or hospital-based care (inpatient NIV set up plus outpatient NIV monitoring) and followed up at 1, 4 and 7 months. Alongside measures of treatment effectiveness, we will assess patient and carer preferences, their experience, quality of life, and cost-effectiveness. We hope that the knowledge generated in this study will help us to transform the way NIV treatment is delivered for people with MND to improve their experience and quality of life.

  • REC name

    East of England - Cambridgeshire and Hertfordshire Research Ethics Committee

  • REC reference

    23/EE/0275

  • Date of REC Opinion

    20 Dec 2023

  • REC opinion

    Favourable Opinion