Patient-Driven Consensus Effort Defines Ileoanal Pouch Syndrome

Numerous studies have evaluated patient outcomes after proctocolectomy with ileal-pouch anal anastomosis (IPAA), including some that created symptom scoring systems. Unfortunately, nearly all of this research was marred by a paternalistic approach in which clinicians, typically surgeons, arbitrarily selected the symptoms to ask about.

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The Crohn's and Colitis Foundation (CCF) recently funded a Delphi consensus study to identify what outcomes patients consider important to study after pouch surgery. It resulted in the definition of a new entity: ileoanal pouch syndrome (IPS), the amalgamation of symptoms and their consequences that patients experience after IPAA.

On behalf of several hundred participants in this effort, Paul M. Cavallaro, MD, resident in the Department of Surgery at Massachusetts General Hospital, Liliana G. Bordeianou, MD, MPH, FACS, FASCRS, professor of Surgery with Harvard Medical School and site director of colorectal surgery at Mass General, 14 clinician colleagues, and two patients published the consensus statement simultaneously in Annals of Surgery and Diseases of the Colon & Rectum.

Study Methods

The Delphi method involves structured, repeated communication among experts to reach a consensus decision systematically. This particular project involved a scientific committee, expert panels, patient focus groups and a plenary discussion.

• Scientific committee—The committee began with nine members of the CCF Surgical Research Network, who invited other expert colorectal surgeons to join the committee along with patients, nurse specialists and gastroenterologists. The committee generated study questions based on a systematic literature review through June 1, 2019, and coordinated the panels' work
• Panels—There were three expert panels: 217 patients, 62 surgeons and 56 gastroenterologists, and other clinicians who care for IPAA patients before and after surgery. Patients were eligible if they were 18 or older, had undergone IPAA with any type of reconstruction and had had intestinal continuity restored by reversal of protective diverting ileostomy for at least one year
• Surveys—Three rounds of online Delphi surveys were used to identify high-priority patient outcomes. Patients were asked to score the importance of each outcome regardless of how severe it is/was for them personally
• Patient focus groups—After the three rounds of voting, patients were invited to participate in focus group discussions via videoconference. Four groups were convened, each limited to 15 participants. Patients were asked structured questions and the discussions were summarized for the final meeting. Patients had a broad range of experiences and satisfaction levels with their surgery, and conversations were not dominated by overwhelmingly positive or negative viewpoints
• Final meeting—All patients and clinicians who completed the three Delphi rounds were invited to participate in the final consensus meeting, held by videoconference. 122 of them attended (73% of patients, 18% of surgeons and 9% of gastroenterologists)

Ileoanal Pouch Syndrome

The patient panel, in conjunction with the clinicians who attended the final meeting, coined the term ''ileoanal pouch syndrome'' to describe the impact of ileoanal pouch surgery. The consensus statement focuses on seven bowel symptoms that may negatively affect quality of life:

1. Fecal incontinence
2. Soiling
3. Urgency
4. Frequency
5. Altered bowel function (fragmentation, clustering, incomplete evacuation)
6. Perianal pain and other perianal symptoms
7. Nocturnal symptoms

The consensus statement also lists seven important consequences of IPS:

1. Pad use
2. Toilet awareness
3. Dietary and medical adjustments
4. Alterations in sleep and energy
5. Negative impact on intimacy
6. Alterations in social roles
7. Negative mental, emotional and psychological alterations

Patients should be diagnosed as having IPS if they report at least one of these symptoms and one consequence.

Full definitions of each symptom and consequence and examples of how patients described them are provided in an appendix to the consensus statement.

Next Steps

The consensus process didn't measure the impact of the symptoms on quality of life (positive, negative or neutral). The next step is to develop a clinically useful scoring system that quantifies the range and severity of IPS symptoms.

Such a score would theoretically identify patients whose IPS has a severe negative impact on quality of life and needs treatment. It would also be useful for assessing the efficacy of medical and surgical interventions to improve quality of life post-IPAA. An effort to create a scoring system has received additional funding from the CCF and is currently ongoing.

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