PROPS Study: Patient-Reported Outcomes after Pouch Surgery (Liliana Bordeianou, USA)

 

Using methodology similar to the LARS Definition project, the plan is to produce a new definition and score for function after ileoanal pouch surgery. IRB approval in place. Final consensus took place virtually in 2020.

Funder: Crohn’s and Colitis Foundation Surgical Research Network

Final consensus in 2020 and now published simultaneously in:
Patients Undergoing Ileoanal Pouch Surgery Experience a Constellation of Symptoms and Consequences Representing a Unique Syndrome: A Report from the Patient-Reported Outcomes After Pouch Surgery (PROPS) Delphi Consensus Study.

Cavallaro PM, Fearnhead NS, Bissett IP, Brar MS, Cataldo TE, Clarke R, Denoya P, Elder AL, Gecse KB, Hendren S, Holubar S, Jeganathan N, Myrelid P, Norton BA, Wexner SD, Wilson L, Zaghiyan K, Bordeianou L; PROPS Delphi Study Expert Panels.

Dis Colon Rectum. 2021 Jul 1;64(7):861-870. doi: 10.1097/DCR.0000000000002099.

Patients Undergoing Ileoanal Pouch Surgery Experience a Constellation of Symptoms and Consequences Representing a Unique Syndrome: A Report From the Patient-Reported Outcomes After Pouch Surgery (PROPS) Delphi Consensus Study.

Cavallaro P, Fearnhead N, Bissett I, Brar M, Cataldo T, Clarke R, Denoya P, Elder AL, Gecse K, Hendren S, Holubar S, Jeganathan N, Myrelid P, Norton BA, Wexner S, Wilson L, Zaghiyan K, Bordeianou L; PROPS Delphi Study Expert Panels.

Ann Surg. 2021 Jul 1;274(1):138-145. doi: 10.1097/SLA.0000000000004829.

 

PROPS 2
Patient Reported Outcomes after Pouch Surgery (PROPS) 2: Development and Validation of a Scoring System for Bowel Function after J Pouch for Ulcerative Colitis
Lead investigators: Liliana Bordeianou, MD and Madhulika Varma, MD (USA)

Tripartite Partners:
Nicola Fearnhead, DM, Department of Colorectal Surgery, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
Ian Bissett, MD, Department of Surgery, University of Auckland, Auckland, New Zealand.
Pär Myrelid, MD, Department of Surgery, County Council of Östergötland, and Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden
Krisztina Gecse, MD, Amsterdam UMC, University of Amsterdam, Department of Gastroenterology and Hepatology, Meibergdreef 9, Amsterdam, the Netherlands

USA Collaborators: 11 sites , recruitment of PIs ongoing and more are welcome

Contact email: lbordeianou@mgh.harvard.edu
Permission to include project and contact email on Tripartite 2022 website: yes
Twitter: @LilianaBordei

Short update on progress so far:
Functional outcomes following restorative proctocolectomy with J pouch for ulcerative colitis have been studied, but the field lacks standardization in reporting of functional measures. A validated comprehensive scoring system is necessary to be able to assess functional outcomes after surgery and to compare results from different studies, with a particular focus on what outcomes are truly important to patients. The recently completed  Delphi consensus study generated  a list of bowel symptom items agreed upon by patients and clinicians to be critical for J pouch function and quality of life (QoL). The current proposal aims to utilize the items identified by the Delphi consensus process to create and validate a clinically useful scoring system for quantifying J pouch functional outcomes after surgery, with the goal of identifying patients with severe dysfunction, which we will refer to as “J pouch syndrome”.  So far we had 11 sites volunteer to help with the study, from all tripartite organizations.

Funder: Crohn’s and Colitis Foundation Surgical Research Network