LEADER Left vEntricular Assist Device Experience Research

  • Research type

    Research Study

  • Full title

    Living with an LVAD: Measuring Health Related Quality of Life in Left Ventricular Assist Device Recipients

  • IRAS ID

    256307

  • Contact name

    Anita Slade

  • Contact email

    a.l.slade@bham.ac.uk

  • Sponsor organisation

    University of Birmingham

  • Duration of Study in the UK

    2 years, 11 months, 31 days

  • Research summary

    People with heart problems sometimes need a heart transplant but can get seriously ill or die while waiting. Inserting a mechanical pump called a Left Ventricular Assist Device (LVAD) can help the heart and improve peoples symptoms, but it requires major surgery. The person then has to have alterations to their home, carry lots of equipment around with them all of the time, and sleep attached to a monitor. This can have a negative impact on their health related quality of life (HRQoL). It is important that we know how living with an LVAD affects recipients lives. Patient reported outcome measures (PROMs) would help us to measure the impact of having an LVAD on quality of life. PROMS are completed by the person living with an LVAD and this allows them to describe how they are feeling and what impact receiving an LVAD has on their health related quality of life. People living with an LVAD have told us that existing PROMs are missing vital information and do not reflect their experiences. Developing a new PROM with input from LVAD recipients would allow us to better understand what life is like for LVAD recipients. This would allow us to see if clinical interventions and future design evolutions improve their quality of life. It would also allow us to identify if quality of life is deteriorating or improving over time. This information could also help potential recipients and clinicians make informed choices on their clinical care and whether an LVAD is the best treatment choice for them.

  • REC name

    West Midlands - South Birmingham Research Ethics Committee

  • REC reference

    19/WM/0120

  • Date of REC Opinion

    2 May 2019

  • REC opinion

    Favourable Opinion