N31 Nothing about us, without us: Developing a reliable IBD information source on sexual well-being by patients and for patients

Fourie, S.(1);Johnstone, L.(1)*;Czuber-Dochan, W.(2);

(1)University of Oxford, Radcliffe Department of Medicine, Oxford, United Kingdom;(2)King's College of London, Florence Nightingale Faculty of Nursing- Midwifery and palliative Care, London, United Kingdom;


Patients with IBD have knowledge and expertise regarding their disease and can contribute to research and information for other patients. Research suggests that despite IBD having a significant impact on the sexual well-being (SWB) of patients, there is a lack of reliable sources of information on this topic, and it is rarely discussed in clinical consultations. 1. This patient engagement project aimed to cover some of the information deemed important to patients.


This project was a co-production with patients to provide a reliable source of information for the previously neglected topic of SWB and IBD. Four volunteers living with IBD from a diverse population, collaborated with researchers over four months. They had 6 online group discussion sessions lasting approximately one hour each. They highlighted themes (fig 1) within the broader topic of sex and relationships that they thought should be addressed in an information resource, based on their own past experiences, or what was missing from reliable websites. Volunteers produced a document that was vetted by researchers, and this became the website content.


The outcome of the project was a free to access website which contains SWB information. Patient experience quotes were considered by volunteers as important. A selection of anonymous patient quotations which provided experiences of IBD impact on SWB were also chosen by the volunteers to be included in the information resource. A psycho-sexual therapist reviewed the content and provided an additional information resource in a PDF form, useful for both patients and healthcare professionals, which can be downloaded. A feedback function is included, where users can ask anonymous questions or make suggestions to be incorporated on the website. Website traffic metrics were collected and showed that within the first two weeks of the website being launched, 511 people engaged with the content and 41 downloaded the information leaflet. This data was used as an initial testing for the platform. Website will be updated yearly based on the feedback received.


This project highlighted the importance of resources on the often-neglected topic of SWB in IBD, to improve quality of life for people with IBD. Co-production with patients to create an information resource corroborates their valuable contribution to the topics important to patients. It also demonstrates how this partnership is necessary to create relatable and needed information for patients. The feedback function of the website provides the opportunity for further input from patients, ensuring that research can continue to be informed by them.