Background & Aims
Chronic Pelvic Pain (CPP) affects up to 26.6% of women worldwide. Visceral hypersensitivity is likely to be an important mechanism in CPP, but has until recently, been difficult to study in part due to invasive testing methods. New paradigms devised by Tu and colleagues[1] have enabled bladder sensitivity to be investigated non-invasively. However this paradigm is long in duration (up to 2 hours) and somewhat intimate in nature, which limits its utility in research and prohibits its use in clinical practice. In this study we aim to adapt this paradigm to allow participants to carry out the testing at home. To ensure that the at-home paradigm is suitable and accessible we have consulted with public/patient partners to design the paradigm and advise on materials needed.
Methods
Public Patient Involvement (PPI) advisors were recruited using posters distributed on social media and word-of-mouth. PPI sessions took place online using teams or in person, as suited the advisor. The sessions included an explanation of the study and PPI as well as discussion about specific aspects of the study. PPI advisors were remunerated for their participation in sessions. Suggestions made by PPI advisors were integral to the design of the at-home paradigm and included the design of: a training video, online data capture and integrated video for prompts during paradigm, information and advertisement material, consideration of practical aspects of the paradigm design such as how it would work in shared living areas.
Results
Nine PPI advisors were involved across three sessions advising on all aspects of the at-home paradigm design. PPI input allowed us to design an at-home visceral sensitivity testing paradigm which can in the future be potentially utilised for both research and clinical practice. Funding is secured for a planned pilot study in which female participants will complete the paradigm with researchers as in previous studies[1] and 4 times at home. We will compare the reproducibility of measures using the at-home paradigm and the in person paradigm, as well as assess the acceptability of the at-home paradigm. We will also use the at-home paradigm to explore whether visceral sensitivity varies across the month with menstrual cycle.
Conclusions
Public Patient Involvement (PPI) in research is an important aspect of study design and advisors can provide incredibly useful feedback on the practicality of taking part in the research study. PPI encourages novel methods of study design and helps to ensure that the research we do is accessible and understanding of the population we are studying. The co-design of an at-home visceral sensitivity paradigm has the potential to broaden the scope of research, particularly into chronic pelvic pain, as it would allow for data collection at home, reducing physical access barriers, research barriers such as availability of space and researchers, and allowing for testing which may be closer to physiological processes.
References
[1] Tu ClinJPain:doi:10.1097/AJP.0b013e31827a71a3
Presenting Author
Lydia Coxon
Poster Authors
Topics
- Patient Engagement and Co-Creation in Research and Education