Identifying the top 10 research priorities of people living with inflammatory bowel disease, their carers, and health care professionals in Australia.

Abstract

Background and Aim: There is a strong need for more research in inflammatory bowel disease (IBD), as the efficacy of treatments is variable, the burden of disease is high in Australia, and the incidence is increasing. Consumers and clinicians provide high-quality and meaningful contributions to the design of research as they ensure relevance to the community, have direct lived experience, and can provide insights into missing evidence. Crohns & Colitis Australia, in collaboration with the James Lind Alliance (JLA) of the United Kingdom, are leading a process that aims to engage people with IBD, carers, and health care professionals to identify their unanswered questions and prioritize the top 10 evidence uncertainties. The intent is that the top 10 will form research priority areas in the future.We aim to describe the project and present results from the first phase. Method(s): This project uses the well-established method of the JLA. The first phase of the project was a nationwide online survey in December 2020 for people with IBD, carers, health care professionals and clinical researchers, to collect questions or uncertainties about IBD. The scope included questions about the prevention, treatment, symptoms, diagnosis, and living with IBD for both pediatric and adult IBD. Questions about cause, cure, and information seeking were excluded. Submitted uncertainties were analyzed and thematically grouped to create broad topic categories. Similar questions were then coded into subgroups of each category by a committee made up of people with IBD, carers, and health professionals. The committee then developed and reviewed indicative questions for each coded group of uncertainties. The second phase of this project is a second online survey for people with IBD, carers, health care professionals, and clinical researchers, to prioritize the indicative questions. A final workshop involving consumers, carers, and health care professionals will prioritize shortlisted questions to develop the top 10 unanswered research questions for IBD in Australia. Phases two and three of the project will be completed in 2021. The Canberra Hospital Human Research Ethics Committee advised that this research is quality improvement and consumer engagement, therefore not requiring ethics approval. This project is funded by Janssen, Takeda, and an anonymous philanthropist. Result(s): The first-phase survey was completed by 224 respondents: 80% people living with IBD, 11% carers, 21% health care professionals, and 5.8% clinical researchers. About 68% of respondents were female. A total of 889 uncertainties were collected, 84% of which were in scope and 16% out of scope. The in-scope uncertainties were categorized into six themes: prevention (12% of total responses), treatment (28%), symptoms (13%), diagnosis (9%), and living with IBD (23%). Conclusion(s): The research to date shows that by using an established methodology, people with IBD, carers, and health care professionals can be engaged in determining future priority research areas. Complete findings of this project will be disseminated in the next 12 months. The top 10 priorities will provide evidence to guide policy researchers and research funders to focus on the most urgent and relevant needs of consumers and health care professionals.