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New Scoring System Allows Assessment of the Severity of Ileoanal Pouch Syndrome

Key findings

  • In previous work, a Delphi consensus panel defined a new clinical entity, ileoanal pouch syndrome (IPS), characterized by seven symptoms and seven consequences that are common after ileal pouch anal anastomosis (IPAA)
  • In this study, an initial questionnaire administered to 298 patients after IPAA showed that each symptom and consequence had a negative effect on quality of life, and a weighted IPS severity score was derived
  • In a validation cohort of 386 patients, the receiver operating characteristic area under the curve of the IPS severity score was 0.83
  • The IPS severity score identifies patients who need further treatment and will also be useful for shared decision-making about IPAA and research into which variations in surgical technique and medical management may improve bowel function

In July 2021, the Patient Reported Outcomes After Pouch Surgery (PROPS) Delphi consensus study defined a new clinical entity: ileoanal pouch syndrome (IPS), the "new normal" bowel function that patients experience after ileal pouch anal anastomosis (IPAA). It was characterized by seven symptoms and seven consequences.

Paul M. Cavallaro, MD, resident in the Department of Surgery at Massachusetts General Hospital, Liliana G. Bordeianou, MD, MPH, site director of the Colorectal Surgery Program at Mass General, co-chair of the Mass General Brigham Colorectal Surgery Collaborative, and Professor of Surgery at Harvard Medical School, and colleagues on the PROPS Scientific Committee have now quantified the impact of each of those symptoms and consequences on quality of life (QoL).

In Annals of Surgery, they report the development and validation of an IPS Severity (IPSS) scoring system, which is unique among postoperative bowel function scores in that it was entirely developed in a population of patients with pouches and items are weighted differently based on patient input.

Questionnaire Development

The researchers developed an initial questionnaire based on the PROPS consensus study results, a literature review, and input from a panel of medical experts, patient advocates, and patients. It asked about the frequency of the 14 IPS symptoms/consequences: never, rarely (<1/month), sometimes (<1/week), weekly, or daily. Participants also rated the impact of their bowel function on their QoL from 0 to 9.

IPSS Score Derivation

The 684 study participants had undergone restorative proctocolectomy with IPAA for ulcerative colitis, Crohn's disease, or familial adenomatous polyposis syndrome and had at least 12 months of intestinal continuity. The first 298 patients to complete the questionnaire served as the derivation cohort, and the other 386 were assigned to be a validation cohort.

All seven symptoms and seven consequences identified in the Delphi consensus study showed a significant impact on QoL. Two domains were divided, and the frequencies were consolidated, resulting in the final 16-questionnaire shown in a figure in the article.

A weighted IPSS score was derived that ranges from 1 to 145. By dividing participants into quintiles, the researchers designated scores as follows:

  • No IPS: <15 points
  • Minor IPS: 15–29 points
  • Moderate IPS: 30–44 points
  • Severe IPS: 45–60 points
  • Extremely severe IPS: ≥61 points

IPSS Score Validation

In the validation cohort, the associations between IPSS score and QoL were:

  • No IPS: poor QoL in 7.7% of patients
  • Severe IPS: 64%
  • Extremely severe IPS: 89%

The receiver operating characteristic area under the curve of the IPSS score was 0.83.

IPSS Score Applications

Many patients who participated in the PROPS consensus study said they felt forgotten by their surgeons and other clinicians after the surgical "cure" of their condition. The IPSS score is a standardized way to quantify bowel dysfunction in postoperative patients who may otherwise feel forgotten.

Other uses for the IPSS score will be to:

  • Measure patient-centered outcomes in a standardized way across surgeons, hospitals, and studies
  • Pinpoint which variations in surgical technique and medical management may improve bowel function and ameliorate complications such as pouchitis
  • Help patients decide whether to undergo IPAA by considering their likely postoperative bowel function, based on IPSS scores across demographic and clinical variables

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Massachusetts General Hospital researchers are establishing the first set of comprehensive, severity-ranked J-pouch surgery functional outcomes measures and defining J-pouch syndrome.


Surgeons at Massachusetts General Hospital helped lead an international, patient-driven consensus study that identified the functional outcomes patients consider important after pouch surgery—and defined "ileoanal pouch syndrome," a constellation of symptoms and consequences specific to having an ileoanal pouch.