1. Concept Generation Phrase

Finding out about the impact of being nil by mouth on Quality of Life from the perspectives of patients, caregivers and healthcare professionals. This will involve interviewing patients and caregivers about their experiences. Healthcare professionals based in the United Kingdom, who have experience of working with adults who are nil by mouth will be surveyed. Topic guides and survey questions will be co-developed with PPIE group members. PPIE members will be involved in the analysis of the data.

2. Item appraisal for preliminary Patient Reported Outcome Measure

A questionnaire will be co-developed with patient experts to measure how someone’s quality of life is impacted by being nil by mouth. Patient, caregivers and healthcare professionals will be involved with this process of reviewing the items included. Themes from the interviews and survey responses gathered in phase 1 will be used to guide the content of the questionnaire along with themes identified in from the literature review.

3. Cognitive debriefing interviews

Cognitive interviewing of the questionnaire will involve asking a range of patients to complete the questionnaire. Patients will be asked to describe their thought process and experience whilst completing the questionnaire. Based on feedback from the testing, the content and layout of the questionnaire may be revised.