BSG CSSC Service Development Prize 2022 2nd place submission by Valerio Celentano.
Names of team involved: Celentano V1,2, Rafique H1,2, Jerome M1, Lee YJ1, Kontovounisious C1,2, Warren O1,2, MacDonald A1,2 , Wahed M1,2, Mills S1,2, Tekkis P1,2
1Chelsea and Westminster Hospital NHS Foundation Trust, London, United Kingdom.
2Department of Surgery and Cancer, Imperial College, London, United Kingdom.
Valerio Celentano MD PhD FRCS, Consultant Colorectal Surgeon, Lead for ileoanal pouch and IBD surgery service, Chelsea and Westminster Hospital NHS Foundation Trust, London, United Kingdom.
Restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA) is the gold standard procedure for ulcerative colitis (UC) refractory to medical treatment and majority of patients with familial adenomatous polyposis. Although many patients undergoing IPAA have satisfactory functional and long-term outcomes, the procedure is complex and associated with significant 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%.
Gaining experience in pouch surgery is difficult as the procedure is performed infrequently across many hospitals, limiting the access to expert care for patients who develop long term complications or poor function.
We present an institutional initiative to promote standardisation of multidisciplinary care in IPAA surgery, with the aim to improve patients’ experience and outcomes.
How we worked as one-team to develop the service
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 dedicated pathway for patients who had an IPAA or are considering IPAA surgery was developed amongst 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 under our care, who had agreed to volunteer for “peer to peer counselling” of perspective IPAA patients, were also consulted.
Our newly developed ileoanal pouch surgery pathway
The preoperative pathway is summarised in table 1. Focus of the preoperative pathway is appropriate patients’ counselling, MDT decision making with support from paediatric surgeons and paediatric gastroenterologists for adolescent patients (Young Adults transition clinic), planning of surgery individualised to the patients’ performance status, expectations, and current medical treatment.
A stepwise approach to minimally invasive ileoanal pouch surgery was also formalised (table 2).
Postoperative follow-up pathway includes the short-term management after IPAA formation or ileostomy reversal and the long-term follow-up in nurse led clinic, table 3.
Database of IPAA patients
The pathway has a strong focus on collection of key performance indicators. The established database includes all the patients who have a j-pouch at Chelsea and Westminster NHS Foundation Trust. Also included are all patients who are considering having an ileoanal pouch following subtotal colectomy. The Results of database are presented yearly at local Clinical Governance Meeting.
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 under sedation as required. On the same day patients attend imaging (ultrasound, Magnetic Resonance Imaging, 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.
During the first 18 months of activity from August 2020 to January 2022, this specialised clinic has reviewed 56 patients, all jointly reviewed by colorectal surgeon, gastroenterologist, pouch and stoma nurse. In 32 of these patients, additional investigations were performed on the same day of the clinic appointment: 21 pouchoscopies, 11 Imaging (4 MRI scan of the small bowel, 3 MRI scan of the pelvis, 3 water soluble contrast enema, 1 abdominal ultrasound). Approximately 30% of the referrals originated from outside the Trust. 100% of the patients feedback stated they were “likely” or “extremely likely” to recommend our service to a friend or family member.
The surgical activity has also grown exponentially. In the same 18 months period (August 2020-January 2022), 24 major restorative surgical procedures were performed, including: 17 new primary pouches, 6 abdominal revisional/redo pouch surgeries, 1 ileo-rectal anastomosis. A minimally invasive approach was applied in 90% of the procedures, with a short-term morbidity of 10%, comparing extremely well with the published literature. Additionally, some 19 patients required day-surgery procedures under general anaesthetics for diagnostics or dilatation of strictures.
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 five years.
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 and long-term follow-up. It’s the authors’ expectations that the risks of short- and long-term pouch failure and dysfunction 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.
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 (e.g. National Bowel Cancer Audit NBOCA in England and Wales) informs education, supports service development and improves outcomes. Our pathway aims to emulate these principles making the patient the focus of care.
|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 appointment in dedicated fertility/sexual health clinic
f. Offer follow up appointment if decision cannot be reached on the day
g. Give pouch service contact details and dedicated email address
|2||Essential requirements to proceed to pouch surgery:
|h. IBD MDT discussion
i. Young adult transition MDT discussion (if paediatric/young adolescents patients)
j. Histopathology review of previous specimen(s)
k. Small bowel assessment (MRI small bowel or capsule endoscopy)
l. Review of current medical treatment
|3||Planning of surgery (depending on performance and nutritional status, current medical treatment)
|a. 2 stages (proctocolectomy and j-pouch with loop ileostomy)
b. 3 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 (IIEF-5) and International prostate Symptom Score (IPSS) for Male patients; Short Female Sexual Function index (FSFI-6) and International Consultation on Incontinence Questionnaire Female Lower Urinary Tract Symptoms Modules (ICIQ-FLUTS) for Female patients.
d. Body Image: Appearance Anxiety Inventory (AAI)
e. Fatigue: Work Productivity and Activity Impairment Questionnaire
f. Dedicated online platform to facilitate collection of PROMs.
Table 1: Preoperative pathway for patients undergoing ileoanal pouch surgery
|1||Standardised minimally invasive surgery technique.
a. Stoma mobilisation and pneumoperitoneum
b. Bowel lengthening manoeuvres
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
Table 2: Stepwise approach for ileoanal pouch surgery
|Post j-pouch formation follow-up
1. Information to be given on discharge: when & where to represent to hospital, who to contact. Loperamide, mesalazine, antibiotics as required
2. Close post-surgical follow-up by stoma nurses as per stoma care pathway.
3. 6 weeks after surgery: face to face outpatient follow-up (to plan timing of reversal of ileostomy and arrange gastrografin enema x-ray or MRI pelvis).
|Post ileostomy reversal:
Routine follow-up pathway:
1. Stoma/pouch nurse telephone call within 1 week of discharge. Further follow up calls/visits arranged on individual basis
2. Face to face surgical outpatient within 6 weeks from surgery
3. 6-month telephone call for pouch function with colorectal surgeon. PROMs questionnaires emailed
4. 12-month face to face appointment with surgical team with questionnaires/PROMS
5. Pouchoscopy within 1 year of pouch formation
6. Blood tests prior to year 1 visit: Full blood count, iron level and B12, liver function, renal function, Vitamin D, Folate, trace elements.
7. 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
Table 3: Follow-up pathway for patients following Ileoanal pouch surgery.