Understanding patient choices for care in MND: a population study

Description:

What this research means to you: Non-invasive ventilation (NIV) and gastrostomy (insertion of a small feeding tube directly into the stomach through the abdominal wall) can help to improve quality of life for people with MND. However, some people who might benefit from NIV or gastrostomy choose not to accept these interventions. This project aims to understand the reasons for these choices. The ultimate objective is to provide evidence on which to base strategies for making NIV and gastrostomy more accessible for people with MND, thus improving standards of care.

The researcher explains in more detail: While 5-20% of people with MND may receive non-invasive ventilation (NIV) or gastrostomy, many more could potentially benefit from these interventions. Little is known about why individuals accept or refuse NIV or gastrostomy. The aim of this study is to identify factors influencing decision-making around NIV and gastrostomy by people with MND, their carers and health professionals. We will recruit at least 100 people with MND in South East England and undertake 6-monthly face-to-face interviews, interspersed with 3-monthly telephone/e-mail interviews. Having obtained preliminary information on the severity of their illness and their psychological state, we will measure their health service use until they are referred for NIV and/or gastrostomy. At that point, we will undertake detailed interviews with patients, carers and the health professionals involved to understand reasons for patients accepting or refusing the intervention. This will improve the evidence on which to base policies for the provision of NIV and gastrostomy. The findings of this study will also aid in the design of future projects that aim to make it easier for people with MND to access these interventions as part of their palliative care.

Institute of Psychiatry

King's College London Dept. of Palliative Care, Policy & Rehabilitation