‘Nil by mouth’ (NBM) describes people who can’t eat or drink. Instead, nutrition and hydration is delivered through a feeding tube directly into their stomach.

In the UK, over 23000 adults have a feeding tube. They may need it for several months or for the rest of their lives. People may be NBM because of a wide range of health conditions including mouth and throat cancer, stroke and difficulties digesting food.

Eating and drinking provides more than just energy to our bodies. Food and drink can bring pleasure, bring people together and is central across cultures and religions. Being NBM can be hugely distressing for individuals and those around them.

Currently, there isn’t a way to measure how being NBM affects someone. People who are NBM may also have difficulties with their communication, for example after a stroke. We don’t know if services are meeting the needs of these people.

Aims
In this project, we will co-develop a questionnaire that measures the impacts of being NBM, by working with people who have direct experience of being NBM or supporting them. The questionnaire will be completed by patients and will be suitable for people with communication difficulties. The questionnaire will be used to improve individual care, inform how services should be provided and evaluate new interventions, which will ultimately improve quality of life for people who are NBM.

Design and methods
The project consists of 3 phases:

• Finding out about being NBM. We will interview people with a range of backgrounds and underlying conditions about how being NBM impacts their quality of life. This will include people with experience of being NBM (patients), and their caregivers. We will support people who have communication difficulties to take part by providing written information in a simple form with pictures. During interviews, patient’s communication needs will be supported on an individual basis. We will also translate written information and provide interpreters for interviews where required. We will also survey healthcare professionals for their views.
• Co-developing the questionnaire. Using the interview and survey answers, We will work with patients, caregivers and healthcare professionals to develop a questionnaire. The questionnaire will measure how someone’s quality of life is affected by being NBM. We will get feedback from patients, caregivers and healthcare professionals about whether the right questions are included and if there are any gaps in the questionnaire.
• Testing the questionnaire. We will then ask a range of patients to complete the questionnaire. We will ask them to describe their experience of completing the questionnaire. We will also ask whether they found it easy to understand and for feedback about the length and format of the questionnaire.

Patient and Public Involvement
A group of 7 people with a range of experience of being NBM and caregivers have supported this proposal and will be integral to the project. They will continue to guide key decision making in the project, help develop questions for interviews and the survey, co-facilitate interviews, review results and present at conferences with me. Patients with communication difficulties will also be involved to ensure that information about the project is inclusive.