Development of a specialist ileoanal pouch surgery pathway: a multidisciplinary patient-centred approach

Abstract

Background

Restorative proctocolectomy with ileal pouch–anal anastomosis (IPAA) is the gold standard procedure for ulcerative colitis refractory to medical treatment, as an alternative to permanent end ileostomy. Gaining experience in pouch surgery is difficult as the procedure is performed infrequently. This study presents an institutional initiative to promote standardisation of multidisciplinary care in IPAA surgery.

Methods

A dedicated pathway for patients who had an IPAA or are considering IPAA surgery was developed among colorectal surgeons, gastroenterologists, paediatric colorectal surgeons, inflammatory bowel disease (IBD) nurses, dietitians, stoma nurses, trainees in colorectal surgery. Pathway items were discussed and finalised via emails and videoconferences.

The pathway included triaging of patients referred for IPAA surgery, preoperative IBD multidisciplinary team discussion and management plan for surgery, surgical review prior to surgery, peer to peer counselling, surgical technique, postoperative short-term and long-term follow-up, audit, research and training in IPAA surgery.

Results

A multidisciplinary preoperative pathway was developed and a stepwise approach to minimally invasive ileoanal pouch surgery was formalised. A dedicated one-stop ileoanal pouch clinic was established integrating endoscopy and imaging on the same day of the consultation with the surgical and gastroenterology team. The clinic reviewed 72 patients over 24 months, and during the same time 36 patients underwent IPAA surgery at our institution.

Conclusions

We have described our initial experience in establishing a specialist IPAA surgery pathway and have proposed outcome measures that we hope will support a subspecialty IPAA service.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Ileal pouch anal anastomosis surgery is an operation performed infrequently in many UK hospitals.

WHAT THIS STUDY ADDS

• A formalised ileoanal pouch surgery pathway and a dedicated "one-stop" j-pouch clinic, resulted in increasing volume of clinical and surgical activity.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• Development of subspecialised high-volume ileoanal pouch surgery centres.

Introduction

Ileal pouch–anal anastomosis (IPAA) after total proctocolectomy is the gold standard procedure for ulcerative colitis (UC) refractory to medical treatment and majority of patients with familial adenomatous polyposis, as an alternative to permanent end ileostomy. Although many patients undergoing IPAA have satisfactory functional and long-term outcomes,¹ the procedure is complex and associated with short-term and long-term morbidity. Several complications following IPAA surgery can lead to pouch failure, defined as functional failure of the pouch requiring pouch excision or permanent diversion, and reported rates can be up to 20%.²

Gaining experience in pouch surgery is hard as the procedure is performed infrequently across many hospitals, as reported by the UK Pouch registry,³ outlining that the average number of pouches performed in English institutions was just three cases per year and one quarter of the surgeons undertaking this operation had performed only one case over the last 5 years.

We present an institutional initiative to promote standardisation of multidisciplinary care in IPAA surgery.

Methods

Our colorectal unit embraces development of subspecialty services within colorectal surgery, and therefore, a lead for inflammatory bowel disease (IBD) and ileoanal pouch surgery was appointed within a structured mentorship programme involving senior surgical colleagues.

A multidisciplinary dedicated pathway for patients who had an IPAA or are considering IPAA surgery was developed among colorectal surgeons, gastroenterologists, paediatric colorectal surgeons, IBD nurses, dietitians, stoma nurses, trainees in colorectal surgery. Pathway items were discussed and finalised via emails and videoconferences. A group of patients who previously had IPAA surgery at our Institution, who had agreed to volunteer for ‘peer-to-peer counselling’ of perspective IPAA patients, were also consulted.

The topics to be finalised in the pathway included triaging of patients referred for IPAA surgery, preoperative IBD multidisciplinary team discussion and management plan for surgery, surgical review prior to surgery, peer-to-peer counselling, surgical technique, postoperative short-term and long-term follow-up, audit and research (data collection, patient-reported outcome measures, PROMs), standardised pouchoscopy protocol⁴, training in IPAA surgery. The pathway development was registered as a Trust Audit according to local policy.

The one-stop J-pouch clinic

All IPAA patients are reviewed in this specialised clinic provided by colorectal surgeons, gastroenterologists, IBD nurses, stoma and pouch nurses, integrated with imaging and endoscopy.

The clinic is organised with a morning session, where pouchoscopies are performed jointly by a colorectal surgeon and gastroenterologist. On the same day patients attend imaging (ultrasound, MRI and X-rays) where appropriate. When patients have recovered from sedation and have completed any other imaging required, they are seen in clinic by the colorectal surgeon and pouch nurse, usually in the afternoon. PROMs (quality of life, pouch function, urogenital function, fatigue, as detailed in table 1) and a feedback form on the one-stop j-pouch clinic patient experience are collected. Following the initial appointment, ongoing follow-up is organised in dedicated colorectal, gastroenterology, nurse-led clinics. The ‘one-stop j-pouch clinic’ is reserved for new referrals of patients considering having IPAA surgery or with pouch dysfunction. The referrals are triaged prior to booking, and further information from the referrer are requested, when needing to clarify the indication for same day investigations. Patients already known to the service are booked to either a colorectal or gastroenterology clinic for follow-up, unless review in the one-stop clinic is required on an ‘ad hoc’ basis. A stepwise approach to IPAA surgery (table 2) and follow-up pathway (table 3) were also developed.

Table 1.

Preoperative pathway for patients undergoing ileoanal pouch surgery

1	Outpatient clinic consultation in dedicated pouch clinic with colorectal surgeon, gastroenterologist, stoma/pouch nurse.	a. Give written information—dedicated leaflet developed b. Counselling on pouch function. c. Counselling on stoma formation and function with written information and stoma siting with stoma nurses (if no stoma already present). d. Offer peer to peer counselling with our group of j-pouch patients who have volunteered. e. Offer follow-up appointment if decision cannot be reached on the day. f. Give pouch service contact details and dedicated email address.
2	Essential requirements to proceed to pouch surgery:	a. IBD MDT discussion. b. Young adult transition MDT discussion (if paediatric/young adolescents patients). c. Histopathology review of previous specimen(s). d. Small bowel assessment (MRI small bowel or capsule endoscopy). e. Review of current medical treatment.
3	Planning of surgery (depending on performance and nutritional status, current medical treatment)	a. Two stages (proctocolectomy and j-pouch with loop ileostomy). b. Three stages (subtotal colectomy with end ileostomy, proctectomy and pouch, stoma reversal).
4	Collect patient-reported outcome measures (PROMs)	a. Quality of life (short IBD questionnaire). b. Pouch clinic feedback form (dedicated form developed from NHS friends and family test). c. Urogenital function: International Index of Erectile Function-5 and International prostate Symptom Score for Male patients; Short Female Sexual Function index-6 and International Consultation on Incontinence Questionnaire Female Lower Urinary Tract Symptoms Modules for Female patients. d. Body Image: Appearance Anxiety Inventory. e. Fatigue: Work Productivity and Activity Impairment Questionnaire. f. Dedicated online platform to facilitate collection of PROMs.

IBD, inflammatory bowel disease; MDT, multidisciplinary team; NHS, National Health Service.

Table 2.

Stepwise approach for ileoanal pouch surgery

1	Standardised minimally invasive surgery technique. a.Stoma mobilisation and pneumoperitoneum. b. Bowel lengthening manoeuvres and trial descent of the pouch c. Proctectomy. d. Pouch formation and anastomosis. e. Pouchoscopy and air/water leak test. f. Loop ileostomy formation. g. Two consultants surgeons operating together all IPAA procedures.
2	Routine video recording of the procedure
3	Training: identify steps for training according to trainees’ previous experience. Stoma/pouch nurse theatre attendance for training and experience
4	Enhanced recovery after surgery
5	Data collection

IPAA, ileal pouch-anal anastomosis.

Table 3.

Follow-Up pathway for patients following ileoanal pouch surgery

Post j-pouch formation follow-up

Information to be given on discharge: when & where to represent to hospital, who to contact. Loperamide, mesalazine if cuffitis, antibiotics as required Close post-surgical follow-up by stoma nurses as per stoma care pathway. 6 weeks after surgery: face to face outpatient follow-up (to plan timing of reversal of ileostomy and arrange gastrografin enema X-ray).

Post ileostomy reversal:

Routine follow-up pathway: Stoma/pouch nurse telephone call within 1 week of discharge. Further follow-up calls/visits arranged on individual basis. Dietitian review Face to face surgical outpatient within 6 weeks from surgery 6 month telephone call for pouch function with colorectal surgeon. PROMs questionnaires emailed 12 month face to face appointment with surgical team with questionnaires/PROMS Pouchoscopy within 1 year of pouch formation Blood tests prior to year 1 visit: Full blood count, iron level and B12, liver function, renal function, vitamin D, folate. After year 1 follow-up is complete: Rebook for further follow-up in case of complications or poor function, otherwise yearly PROMs emailed and 6montnly/yearly telephone follow-up

PROMs, patient-reported outcome measures.

Results

One-stop clinic activity

During the first 24 months of activity from August 2020 to September 2022, this specialised clinic has reviewed 72 patients (figure 1), all jointly reviewed by colorectal surgeon, gastroenterologist, pouch and stoma nurse. In 42 of these patients, additional investigations were performed on the same day of the clinic appointment: 27 pouchoscopies, 15 Imaging (7 MRI scan of the small bowel, 4 MRI scan of the pelvis, 3 water soluble contrast enema, 1 abdominal ultrasound). Approximately 30% of the referrals originated from outside the Trust. One hundred per cent of patients of the patients’ feedback stated they were ‘likely’ or ‘extremely likely’ to recommend our service to a friend or family member.

Figure 1.

Ileoanal pouch surgery pathway. IBD, inflammatory bowel disease; IPAA, Ileal Pouch Anal Anastomosis; MDT multidisciplinary team; PROMS, patient-reported outcome measures.

Surgical activity

The surgical activity has also grown exponentially. In the same 24 months period (August 2020-September 2022), 36 major restorative surgical procedures were performed, including: 26 new primary pouches, 8 abdominal revisional/redo pouch surgeries, 2 ileorectal anastomosis. A minimally invasive approach was applied in 90% of the procedures, with a short-term morbidity of 15%, comparing extremely well with the published literature. The surgical outcomes of the patients having primary and revisional IPAA surgery during the study period are presented in table 4, confirming the known increased complexity and morbidity of revisional surgery.

Table 4.

Baseline patients’ characteristics and 30-days postoperative outcomes in patients undergoing primary or revisional IPAA surgery

	Primary IPAA (n=26)	Redo IPAA (n=8)
Age (years)	27.5 (17–48)	43.5 (27–58)
Male to female ratio	12:14	2:6
ASA
I	0	0
II	20	2
III	6	6
BMI	23.5 (18–27.5)	26 (22–32.5)
Operation performed	2-stage RPC: 3 3-stage RPC: 23	In-situ pouch augmentation: 4 Pouch-pexy: 1 Redo-pouch: 3
Approach:
Laparoscopic completed	24 (92.3%)	1 (12.5%)
Laparoscopic converted to open	1 (3.8%)	0
Open	1 (3.8%)	7 (87.5%)
Operating time (minutes)	295 (170–585)	340 (150–635)
Postoperative Length of stay (days)	6 (4–18)	13 (5–29)
Postoperative complications	4 (15.3%)	3 (37.5%)
Complication details	Anastomotic leak: 2 (7.7%) Wound infection: 1 (3.8%) Intra-abdominal collection: 1 (3.8%)	Entero-cutaneous fistula: 1 (12.5%) Anastomotic leak: 1 (12.5%) Wound infection: 1 (12.5%)
Reoperations	0	0

BMI, body mass index; IPAA, ileal pouch-anal anastomosis.

In addition, some 29 patients required day-surgery procedures under general anaesthetics for diagnostics or dilatation of strictures.

Discussion

Our newly developed pathway has generated a high volume of clinical and surgical activity, particularly evident in comparison with the previously published UK Pouch registry, reporting that the average number of pouches performed in English institutions was just three cases per year and one quarter of the pouch surgeons undertaking this operation had performed only one case over the last 5 years.

There are known technical challenges surrounding the IPAA procedure, with significant focus around minimally invasive approaches, plane of rectal dissection,⁵ three-stage versus two-stage (and modified two-stage)⁶ restorative proctocolectomy. These challenges are reflected in inconsistencies in IPAA surgery practice, with need for consensus on what is considered safe and appropriate.^{7 8} Further, IPAA surgery is an operation with a high rate of short-term morbidity and long-term risk of failure.

We present a comprehensive and multidisciplinary IPAA pathway, which includes the critical technical steps of surgery, within an integrated protocol of preoperative assessment and close short-term and long-term follow-up. It is the authors’ expectations that these risks are minimised via a dedicated pathway to pool expertise and aid subspecialty development.

Formalising a robust pathway promotes clinical governance, the introduction of new techniques and allows for prospective data collection. Further the innovative, one stop J-pouch clinic, makes the patient the epicentre of an environment promoting multidisciplinary care and individualised treatment, with counselling available from peer patients who previously underwent IPAA surgery to support perspective IPAA patients in this complex life-changing decision. Our dedicated IPAA pathway requires significant resources for its delivery, such as dedicated nurse-led clinics and triaging of referrals, or a regularly accessed email address to reply to patients’ queries within 48 hours. While we have demonstrated that a dedicated pathway can generate an increase in the clinical and surgical activities, its cost-efficiency and long-term benefit on patients reported outcomes is yet to be established, as a much longer follow-up is needed. Establishing a referral pathway with a service already providing high volume IPAA surgery, might be more feasible for hospitals infrequently performing these procedures, in view of the significant resources required, and the multidisciplinary interest and expertise needed, which represents an important barrier for the implementation of this service delivery model. Our ‘one-stop J-pouch clinic’ is not to be intended as a one-size fits all solution, but as a triaging system to direct the IPAA patients towards the most appropriate investigations, treatments and follow-up. Patients with recurrent pouchitis, or patients with previous dysplasia, are examples where a different follow-up pathway is mandated.

It is unfortunate that transparency regarding activity levels, outcomes and resource utilisation is not compulsory for IPAA surgery. This is despite IPAA surgery needing complex decision making, with involvement of multiple specialties, being resource intensive with prolonged theatre times and hospital stays. There is evidence that recording practice and outcomes with formal registries (eg, National Bowel Cancer Audit in England and Wales) informs education, supports service development and improves outcomes.⁹ Our pathway aims to emulate these principles making the patient the focus of care, with the vision to reduce variations of surgical outcomes in IBD surgery.¹⁰ We acknowledge that some of the tools for PROMs reporting used in our clinic have not been directly validated for IPAA patients (ie, short IBD questionnaire) as there is paucity of studies consistently addressing functional outcomes and quality of life in this group of patients. Nevertheless, we have integrated several questionnaires in our pathway, including not only quality of life, but also urogenital function, social functioning and direct feedback from the patient experience of the one-stop clinic, which we believe is an effective way to photograph the outcomes that really matter to patients, in addition to the short-term surgical morbidity.

Conclusions

We have described our initial experience in establishing a specialist IPAA surgery pathway and have proposed outcome measures that we hope will support any colorectal subspecialist receiving IPAA referrals or with a cache of established IPAA patients. We envisage that via an iterative process, analysis of prospectively collected data and comparison with published outcomes the pathway will experience rigorous scrutiny and improvement over time.

Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.

Ethics statements

Patient consent for publication

Not applicable.