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PRESTO: Development of a new patient reported outcome measure (PROM) to assess psychosocial response to stoma in people with IBD
Professor Lesley Dibley & Dr Ryan Essex (University of Greenwich)
We would like to invite you to take part in this original study being carried out by a team of researchers led by Professor Lesley Dibley, Centre for Chronic Illness and Ageing, Institute for Lifecourse Development at The University of Greenwich, London. Lesley is a chronic illness researcher and has researched patient experiences of IBD since 2008. The research team includes IBD and rehabilitation researchers, a health psychologist and a biomedical ethicist. This study aims to develop a new questionnaire informed by the experiences of those living with a stoma for IBD, so that they can report outcomes relevant to the issues that matter to them.
What is this study about? About 500,000 people in the UK have Inflammatory Bowel Disease (IBD), which includes Crohn’s Disease (CD) and Ulcerative Colitis (UC). Both are incurable but treatable, mainly with medicines. However, 30% with UC and 70% with CD will need surgery, which may include stoma formation. Short questionnaires for assessing confidence in practical stoma management and quality of life do exist, but have not been developed with patients, and do not address important psychosocial issues such as attitudes towards dirt and bodily functions, feelings of stigma, and resilience. Our earlier work has indicated that these are powerful influences. We aim to produce a new questionnaire, designed with input from people with IBD. This kind of questionnaire is called a patient-reported outcome measure (PROM).
You are being asked to participate as you might be able to help with an interview to explore your experiences of living with IBD and a stoma, or expecting to have stoma surgery soon. The study will take part in stages, and for this first phase, we are looking for people who have been diagnosed with IBD, are at least 18 years old and have or are waiting for a stoma.
You will be asked to talk about your experiences of living with IBD and having or expecting to have a stoma. We are interested in understanding the ‘everydayness’ of life for you, what you find difficult or worrying, and what is helpful – we hope to explore a wide range of experience, from those who find life challenging to those who do not. Whilst we have some questions prepared, we will also explore topics that are raised by you. When the interview ends, you will not be asked to do anything else for the study.
My name is Professor Lesley Dibley and I am a researcher at the University of Greenwich who specialises in peoples’ experiences of chronic conditions. We are seeking to develop a new questionnaire for assessing psychosocial adjustment to stoma in people with IBD. We are looking for participants who would be willing to talk about their experiences which we can then draw on to develop the new questionnaire. If you are interested and would like to know more, please follow this link [https://docs.gre.ac.uk/__data/assets/pdf_file/0033/259638/presto-pis-phase-1-interviews.pdf] … this will take you to a page on our university website which will tell you all about the study. You will also find information there on how to get in touch with us if you do want to take part. Thanks for taking the time to read this post.