Abstract

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

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

Paul Cavallaro 1, Nicola Fearnhead 2, Ian Bissett 3, Mantaj Brar 4, Thomas Cataldo 5, Rasheed Clarke 6, Paula Denoya 7, Amber Lorraine Elder 8, Krisztina Gecse 9, Samantha Hendren 10, Stefan Holubar 11, Nimalan Jeganathan 12, Pär Myrelid 13, Beth-Anne Norton 14, Steven Wexner 15, Lauren Wilson 16, Karen Zaghiyan 17, Liliana Bordeianou 18, PROPS Delphi Study Expert Panels

 
     

Author information

  • 1Department of General Surgery, Massachusetts General Hospital, Boston, Massachusetts.
  • 2Department of Colorectal Surgery, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
  • 3Department of Surgery, University of Auckland, Auckland, New Zealand.
  • 4Division of General Surgery, Department of Surgery, Mount Sinai Hospital, University of Toronto, Toronto, Canada.
  • 5Division of Colon & Rectum Surgery, Beth Israel-Deaconess Health Medical Center, Harvard Medical School, Boston, Massachusetts.
  • 6Patient Advocate, Blogger, www.rasheedclarke.com.
  • 7Division of Colon and Rectal Surgery, Department of Surgery, Stony Brook University Hospital, Stony Brook, New York.
  • 8Patient Advocate, Blogger, www.colitisninja.com.
  • 9Department of Gastroenterology and Hepatology, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, Amsterdam, the Netherlands.
  • 10Department of Surgery, University of Michigan, Ann Arbor, Michigan.
  • 11Department of Colon and Rectal Surgery, Cleveland Clinic, Cleveland, Ohio.
  • 12Department of Surgery, Division of Colon & Rectal Surgery, Pennsylvania State University College of Medicine, Hershey, Pennsylvania.
  • 13Department of Surgery, County Council of Östergötland, and Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden.
  • 14Crohn's and Colitis Center, Brigham and Women's Hospital, Boston, Massachusetts.
  • 15Department of Colorectal Surgery, Cleveland Clinic Florida, Weston, Florida.
  • 16Department of Surgery, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire.
  • 17Division of Colorectal Surgery, Cedars-Sinai Medical Center, Los Angeles, California.
  • 18MGH Colorectal Surgery and Crohn's and Colitis Centers , Department of Gastrointestinal Surgery and Surgical Oncology, Boston, Massachusetts.

Abstract

Objective: The primary aim was to create a patient-centered definition of core symptoms that should be included in future studies of pouch function.

Background: Functional outcomes after ileoanal pouch creation have been studied; however, there is great variability in how relevant outcomes are defined and reported. More importantly, the perspective of patients has not been represented in deciding which outcomes should be the focus of research.

Methods: Expert stakeholders were chosen to correlate with the clinical scenario of the multidisciplinary team that cares for pouch patients: patients, colorectal surgeons, gastroenterologists/other clinicians. Three rounds of surveys were employed to select high-priority items. Survey voting was followed by a series of online patient consultation meetings used to clarify voting trends. A final online consensus meeting with representation from all 3 expert panels was held to finalize a consensus statement.

Results: One hundred ninety-five patients, 62 colorectal surgeons, and 48 gastroenterologists/nurse specialists completed all 3 Delphi rounds. Fifty-three patients participated in online focus groups. One hundred sixty-one stakeholders participated in the final consensus meeting. On conclusion of the consensus meeting, 7 bowel symptoms and 7 consequences of undergoing ileoanal pouch surgery were included in the final consensus statement.

Conclusions: This study is the first to identify key functional outcomes after pouch surgery with direct input from a large panel of ileoanal pouch 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.

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