P108 Identifying Patient-Centered Future Research Priorities: A Report from the Patient Reported Outcomes after Pouch Surgery (PROPS) Delphi Consensus Study
Cavallaro, P.(1);Bordeianou, L.(1);
(1)Massachusetts General Hospital, Section of Colon and Rectal Surgery, Boston, United States;
The Patient Reported Outcomes after Pouch Surgery (PROPS) Delphi Consensus Study recently described Ileoanal Pouch Syndome – the constellation of functional outcomes that should be the focus of future research. Importantly, several additional items not related to bowel function were identified by patients as critical to their quality of life. The aim of this abstract is to highlight these additional items.
Three panels of expert stakeholders were chosen to correlate with the clinical scenario of the multidisciplinary team that cares for pouch patients: (A) patients, (B) colorectal surgeons, (C) gastroenterologists/other clinicians. IPAA patients were recruited by advertisements on the social media pages of a national patient advocacy groups. Clinicians were recruited by a 14 member scientific committee with the aim of selecting experts in inflammatory bowel disease and IPAAs. A starting list of items was generated by systematic literature review. Three rounds of Delphi surveys were employed to select high priority items based on an a priori threshold. Participants had the opportunity to suggest additional symptoms not included in the starting list. A final online consensus meeting with representation from all three expert panels was held to finalize a consensus statement.
After three rounds of voting, 195 patients, 62 colorectal surgeons, and 48 gastroenterologists/other specialists completed all three rounds. In the patient group, 95% had UC and J-pouch anatomy. In the early Delphi rounds, approximately 74% of patients identified impact on sexual function/intimacy as a high priority outcomes, while 70% of patients identified impact on ability to conceive as a high priority. Similarly, 78% of patients believed that risk of pouchitis was a high priority, compared to 47% of surgeons and 66% of gastroenterologists. Furthermore, patients participating in the subsequent online focus groups and final consensus meeting felt strongly that future research on delivery of care, long term follow up, and proper consent before surgery (including accurate counseling on function and perception of being “cured”) were critical areas for future research.
PROPS was the first study to identify key functional outcomes after pouch surgery with direct input from a large panel of IPAA patients. The inclusion of patients in all stages of the consensus process allowed for a true patient-centered approach in defining the core domains that should be focused on in future studies of pouch function. In addition to the identification of key bowel function outcomes, the study highlighted additional patient-centered core outcomes that clinicians should focus future research efforts on.