Disability in Restorative Proctocolectomy Recipients Measured using the Inflammatory Bowel Disease Disability Index

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1 Journal of Crohn's and Colitis, 2016, doi: /ecco-jcc/jjw114 Advance Access publication June 9, 2016 Original Article Original Article Disability in Restorative Proctocolectomy Recipients Measured using the Inflammatory Bowel Disease Disability Index Y. Lee, a A. McCombie, b R. Gearry, a,b F. A. Frizelle, a,b R. Vanamala, b R. W. Leong, c T. Eglinton a,b a Canterbury District Health Board, New Zealand b University of Otago, Christchurch, New Zealand c University of New South Wales, Sydney, Australia Corresponding author: Andrew McCombie, MD, University of Otago, Christchurch, PO Box 4345, Christchurch, New Zealand. Tel.: ; fax: ; mccombieandrew@hotmail.com Abstract Background and Aims: The inflammatory bowel disease [IBD] disability index [IBD-DI], which measures IBD-associated disability, has been validated on IBD patients but not those who have had restorative proctocolectomy with ileal pouch-anal anastomosis [RP with IPAA]. This study aimed to utilize the IBD-DI in RP with IPAA recipients and compare ulcerative colitis [UC]-indicated RP with IPAA patients to medically treated UC patients. Methods: This study was population based. Demographic, indication, complication and direct cost data were collected via medical records while disability, quality of life [QoL] and indirect costs were measured using questionnaires and structured interviews. De-identified raw data about medically treated UC patients were provided by a previous study for comparison. Results: In total there were 136 RP with IPAA patients [mean 11.5 years of follow up]. Eighty-four completed the IBD-DI and 80 completed the IBD questionnaire [IBDQ]. The IBDQ and IBD-DI were highly correlated [r = 0.84, p < 0.01]. Worse QoL and disability were found in those who had their position affected at work [both p < 0.01] and those who had more than 100 days off work in the last year [p < 0.01 for QoL and p = for disability]. Lower QoL and disability scores were associated with higher indirect and total costs [p < 0.01]. UC patients treated with RP with IPAA had less disability than medically treated UC patients [p = 0.04]. Conclusions: Disability in RP with IPAA recipients can be measured using the IBD-DI. Perioperative complications and high costs of care are associated with higher levels of disability. Disability of RP with IPAA recipients was lower than that of medically managed UC patients. Key Words: Disability; inflammatory bowel disease; quality of life 1. Introduction Restorative proctocolectomy with ileal pouch-anal anastomosis [RP with IPAA] is the preferred definitive treatment for many patients when surgical management is required for ulcerative colitis [UC]. It is less commonly performed for malignant and premalignant conditions such as familial adenomatous polyposis [FAP] and selectively in some centres for Crohn s disease [CD]. Previous studies have suggested that quality of life [QoL] is satisfactory after RP with IPAA, 1 although it has recently been demonstrated that the long-term QoL after RP with IPAA depends on the perioperative course. 2 While significant literature exists on QoL after RP with IPAA, it has recently been recognized that QoL is a subjective measure of the impact of disease and it does not objectively measure the disability associated with that disease state. Copyright 2016 European Crohn s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please journals.permissions@oup.com 1378

2 Disability in RP with IPAA measured using IBD-DI 1379 This recognition led to the development of the Inflammatory Bowel Disease Disability Index [IBD-DI], which measures disability, an objective measure of the problems that are experienced in different areas or health domains associated with the disease. 3 There are no published data concerning how the IBD-DI performs in RP with IPAA recipients. A recent Australian study 4 measured the IBD-DI in CD and UC patients without RP with IPAA. It correlated positively with the Inflammatory Bowel Disease Questionnaire [IBDQ; r = 0.87, p < 0.001] as well as negatively with the number of hours of work missed due to health issues [r = 0.52, p < ]. In addition, those who missed work had significantly lower IBD-DI scores [median 16 vs 3, p < 0.001]. Therefore, this study showed the IBD-DI to not only correlate with QoL but also with work productivity. This study did not assess its relationship with healthcare utilization. The present study aimed to measure disability using the IBD-DI in a cohort of RP with IPAA recipients comparing it to QoL, surgical outcomes and healthcare costs. A comparison of IBD-DI and IBDQ was also performed between the cohort from this study and medically treated UC patients from a previous study. 4 It was hypothesized that greater disability will be correlated with poor QoL, and associated with complications and higher costs. 2. Materials and methods This population-based cohort study aimed to recruit all patients with an RP with IPAA in the Canterbury region of New Zealand. The population of the Canterbury region is [June 2012 estimate], 5 making it the largest region in the South Island and the second largest region in New Zealand by population. The capital city of Canterbury is Christchurch Participants Inclusion/exclusion criteria All patients with RP with IPAA performed during the study period of 1984 to June 2013 were included. For the participant to be eligible for the study, the ileostomy/stoma had to be taken down by June 1, All patients who had the procedure performed in Christchurch during this period were included [including those who subsequently moved away from Canterbury], as were those who had an RP with IPAA performed outside of Christchurch and later moved to the Canterbury region. Patients were excluded from the study if they were less than 16 years of age Recruitment Eligible participants for this study were identified using a multi-faceted approach. RP with IPAA recipients were discovered from [a] the Christchurch Public Hospital clinical coding department, [b] the surgical records of Christchurch public hospital colorectal surgeons, [c] the Christchurch private hospitals [Southern Cross Hospital and St. George s Hospital] patient databases, [d] the Canterbury inflammatory bowel disease [IBD] clinical database established by RG in 2006, 6 [e] gastroenterological and surgical colleague referrals, and [f] self-referral through advertisements in public and private clinic waiting rooms, the Facebook social media page of Crohn s and Colitis New Zealand, and an annual Canterbury Crohn s and Colitis Support Group meeting in May participants agreeing to complete the IBD-DI, IBDQ and indirect cost questionnaires. All eligible participants were sent an invitation letter, an information sheet, a consent form, a questionnaire preference form [asking about online vs pen-and-paper preference] and a self-addressed return envelope. Two weeks after the invitation letters were posted, follow-up phone calls were made to eligible participants who did not respond to the letter. The investigator who made the phone call checked with the eligible participant whether they had received the invitation letter; if the letter was received, they were asked if they would like to participate in the study Data collection The following data were collected from the participants [a] demographics, [b] the indication for RP with IPAA, [c] short- and longterm complications, [d] disability as measured by the IBD-DI, [e] QoL as measured by the IBDQ, [f] the direct costs as measured using patient medical records and [g] the indirect costs as measured by the indirect cost questionnaire Demographics Demographics were collected from the participants. Age, sex and diagnosis were collected by examining patient notes while ethnicity, education level and employment status were collected via questionnaire Indications and complications Participants medical records were accessed from primary care, specialist outpatient clinics and all inpatient episodes from the point of colectomy to the end of the study period. Outcomes, details of surgical and ongoing medical treatment and complications were collected from reviewing these records. The indications were broadly divided into acute or elective. The indication for acute or emergency surgery was fulminant colitis. Indications for elective surgery were failure of medical therapy, dysplasia, FAP or other. Complications were split into early [ 30 days after RP with IPAA] or late [>30 days after RP with IPAA]. Possible early complications included haemorrhage requiring transfusion, wound infection, pelvic sepsis and small bowel obstruction [SBO]. Pelvic sepsis was defined as an infective process in the peripouch area, detected during the investigation of clinical symptoms and comprises all abscesses with or without anastomotic leak. 1 Possible late complications included SBO, pouchitis [diagnosed histologically and/or clinically], abscess or fistula, stricture and pouch failure. An early or late SBO was recorded if a hospital admission occurred with clinical and radiological evidence of obstruction. Early complications were further analysed according to the Clavien Dindo classification system, which has five grades of surgical complications. 7,8 Grade 1 is a change from the normal postoperative course without the need for pharmacological treatment or surgical, endoscopic, and radiological interventions. Grade 2 is any pharmacological intervention with drugs not permitted for grade 1 complications; it also includes total parenteral nutrition and blood transfusions. Grade 3 complications are those that require surgical, endoscopic or radiological intervention with or without general anaesthetic. Grade 4 is any life-threatening complication requiring care in an intensive care unit. Grade 5 is death. 7 No grade is given when no complications at all occur Consent Ethics for this study was granted by the University of Otago Ethics Committee [reference number 13/085]. Consenting involved the Disability The IBD-DI 3 was used to measure disability. The IBD-DI, which contains 19 items, is reproducible, reliable and associated with QoL

3 1380 Y. Lee et al. measures and changes in disease activity in IBD patients, although it has not been tested specifically in those with RP with IPAA. 9 The possible scores of this index range from 80 to +22; the more negative the score, the worse the level of disability. 4 Instructions for scoring IBD-DI are published elsewhere. 4 The IBD-DI was administered in either a face-to-face or phone interview because it has yet to be validated for self-reporting Quality of life QoL was measured using the IBDQ, 10 which contains 32 items divided into four health sub-dimensions: bowel symptoms, systemic symptoms, social functioning and emotional function. Responses are scored on a seven-point Likert scale where 7 corresponds to the best function and 1 to the worst. The IBDQ has previously been used in RP with IPAA recipients. 11,12, Direct costs Data on direct costs in 2013 were collected via several sources, namely Christchurch Public Hospital, Christchurch Private Hospitals, primary care providers [i.e. general practitioners] and pharmaceuticals as determined according to the information provided by the Pharmaceutical Management Agency in New Zealand. From these sources, all procedures and appointments in the public and private sector were obtained as were all general practitioner visits and costs of medications Indirect costs Indirect costs for the purpose of this study are costs as a result of work or school absenteeism, loss of work productivity, use of alternative or complementary health resources, travel, carers, tutors and additional phone or internet requirements. This information was collected using an indirect cost questionnaire [see Supplementary Material 1]. Participants were asked to estimate their indirect costs associated with RP with IPAA over the last 12 months. Participants were also offered the opportunity to nominate other costs that were not mentioned in the questionnaire. Indirect costs that were incurred through work absenteeism as a result of illness were calculated by the human capital method. 14 In this method, participants were asked the number of days they had off work as either unpaid or annual leave related to their RP with IPAA; this was then transferred into hours off work and multiplied by their gross hourly wage. 136 patients with restorative proctocolectomy with ileal pouch-anal anastomosis found 95 eligible for IBD-DI and IBDQ Medically treated UC comparison The IBD-DI and IBDQ results for UC patients in this study were compared to a cohort of 41 UC patients in a previous study; 4 the raw de-identified data were provided by the investigators for a direct comparison. A more specific comparison was also made with biologically treated UC patients Statistical methods SPSS was used for statistical analyses. Frequencies and percentages were calculated to determine the response rate. Frequencies, percentages, means and standard deviations [SDs] were calculated for demographics, bowel motion frequency, indications and complications. Completers and non-completers were compared in terms of demographics using t-tests and chi-square tests. A Pearson correlation was calculated for the IBDQ and IBD-DI. The means and SDs were calculated for the questionnaires, and t-tests for independent means were used for binary comparisons. Independent variables that were continuous [e.g. age, years since surgery, costs] were split into two so t-tests could be performed and in cases where the independent variable was discrete and had more than one level [e.g. ethnicity, disease, complications], a suitable reference group was selected against which to perform t-tests. Results were considered statistically significant at p < Finally, the IBD-DI data were compared with data from a previous study 4 using t-tests for independent means. 3. Results 3.1. Participant identification, eligibility and consent Figure 1 shows the method in which the participants were identified and ultimately recruited into the study. Eighty-four participants completed the IBD-DI [88.5%] and 80 [84.2%] completed the IBDQ. In all patients the surgical approach was open rather than laparoscopic Demographics, indications and complications The demographics, indications, outcomes, and direct and indirect costs of those who consented and completed the IBD-DI are shown in Table 1. The same statistics for the total RP with IPAA cohort are available elsewhere. 2 When completers were compared to non-completers in terms of age, age at RP with IPAA, sex, diagnosis, indication, ethnicity, time since surgery and whether the RP with IPAA had failed, no statistically significant differences were found. 8 dead 29 uncontactable 4 stomas yet to be taken down 84 (88.5%) completed IBD-DI, 80 (84.2%) completed IBDQ, and 81 (85.3%) completed indirect costs questionnaire. 11 did not complete IBD-DI and 15 did not complete IBDQ Figure 1. Participant identification and recruitment.

4 Disability in RP with IPAA measured using IBD-DI 1381 Table 1. Participant demographics, bowel motion frequency, indications, complications, and direct and indirect costs of IBD-DI completers Participant characteristics [n = 84] 3.3. Disability, quality of life, and direct and indirect costs Frequency [%] or mean [SD] $ [$ ] $ [$ ] Gender Female 37 [44.0%] Male 47 [56.0%] Ethnicity New Zealand European 70 [83.3%] Other European 5 [6.0%] NZ Maori 2 [3.4%] Other/not stated 7 [8.3%] Age [years] 51.5 [12.8] Age at surgery [years] 40.0 [11.9] Number of years since surgery 11.5 [6.0] BMI 25.8 [4.3] Daytime bowel motion frequency 7.24 [3.29] Disease type Ulcerative colitis 67 [79.8%] Crohn s disease 8 [9.5%] Indeterminate colitis 2 [2.4%] FAP 7 [8.3%] Clinical indications Failed medical therapy 55 [65.5%] Fulminant colitis 12 [14.3%] Dysplasia 6 [7.1%] FAP 7 [8.3%] Other or unknown 4 [4.8%] Early complications [ 30 days after RP with IPAA] Haemorrhage requiring transfusion 8 [9.6%] Wound infection 7 [8.4%] Pelvic sepsis 7 [8.4%] Small bowel obstruction 4 [4.8%] Any early complications 20 [24.1%] Any stage 3 or 4 complications 7 [8.4%] No early complications 63 [75.9%] Late complications [> 30 days after RP with IPAA] Small bowel obstruction 36 [42.9%] Pouchitis 49 [58.3%] Abscess or fistula 26 [31.0%] Stricture 15 [17.9%] Pouch failure [all with stoma] 10 [11.9%] Any late complications 65 [77.4%] No late complications 19 [22.6%] Average total costs [NZD; year 2013] Average direct costs [NZD; year $ [$ ] 2013] Average indirect costs [NZD; year 2013] SD = standard deviation; BMI = body mass index; FAP = familial adenomatous polyposis; NZD = New Zealand dollars. Only those with intact RP with IPAA included in calculation of average number of bowel motions [n = 74]. One person with early complications missing [n = 83]. n = 81 completed indirect cost questionnaire and so n = 81 for total costs. There was a significant positive correlation between IBDQ and IBD-DI [Figure 2; r = 0.84, p < 0.01]. Table 2 describes the IBD-DI and IBDQ for different variables. Overall, the mean IBD-DI score was 1.0 Inflammatory Bowel Disease Disability Index Score [SD = 9.9]. Those who had surgery when they were older than 40 years of age [p = 0.04] described having their position at work affected by their bowel condition [p < 0.01], had required more than 100 days off work in the last year [p = 0.012] and had experienced grade 3 or 4 perioperative complications [p < 0.01] were most likely to have lower IBD-DI scores. Those with a UC diagnosis had less disability than those with CD as a final diagnosis [p = 0.03]. When CD was compared to all other disease groups pooled together, those with CD had more disability [p = 0.03]. Failed medical therapy in IBD as an RP with IPAA indication had more disability than FAP prophylaxis [p = 0.05]. Mean IBDQ score was [SD = 28.4]. Those who scored significantly lower [i.e. worse QoL] included females [p = 0.013], those who had their position affected at work [p < 0.01], those who had more than 100 days off work in the last year [p < 0.01], those who experienced any early complication [p = 0.03], those who experienced any grade 3 or 4 perioperative complications [p < 0.01], and those with an early SBO [p < 0.01]. Those with UC scored higher than those with an eventual diagnosis of CD [p = 0.04]. Those who had a stricture as a late complication scored lower than those who no late complications [p = 0.03]. Table 2 shows that lower IBD-DI and IBDQ scores were associated with higher indirect and total costs [p < 0.01]. There were no significant associations with direct costs Medically treated UC comparison The comparison with medically treated UC patients suggested the RP with IPAA patients had lower levels of disability than their medically treated counterparts ( 0.49 vs 6.39, t[53.63] = 2.10, p = 0.04) while the difference in terms of IBDQ scores approached significance (172.9 vs 159.4, t[56.78] = 1.75, p = 0.09). When RP with IPAA was compared to the five Australian UC patients currently on biological treatment, the results were not significant for IBD-DI ( 0.49 vs 4.80, t[70] = 1.06, p = 0.29) or IBDQ (172.9 vs 171.2, t[67] = 0.15, p = 0.88). 4. Discussion Inflammatory Bowel Disease Questionnaire Score Figure 2. Scatterplot between the IBDQ and IBD-DI. This study is the first to apply the IBD-DI to a well-characterized population-based cohort of RP with IPAA patients with long-term follow up and demonstrated a strong correlation with QoL. QoL, comprising objective and subjective components, 16 has been commonly studied in RP with IPAA patients. 1,17,18,19,20,21,22,23,24,25,26,27 QoL can be defined as a person s self-evaluation of their present level of functioning in day-to-day living and satisfaction with it as compared to

5 1382 Y. Lee et al. Table 2. IBD-DI and IBDQ for different variables Variable n for IBD-DI IBD-DI mean and SD p-value n for IBDQ IBDQ mean and SD p-value All participants [9.9] N/A [28.4] Gender Female [10.3] [30.4] 0.013* Male [9.5] [24.9] Ethnicity New Zealand European [Reference] [10.0] [28.3] Other European [7.8] [15.4] 0.45 New Zealand Maori [19.8] [45.3] 0.46 Other [9.7] [35.3] 0.63 Age 50 or younger [9.85] [29.3] 0.97 Older than [10.1] [28.0] Years since surgery Less than [9.8] [27.6] or more [10.1] [29.2] Age at surgery Less than [8.87] 0.04* [26.5] or more [10.5] [29.6] Level of education [Reference] [11.5] [30.0] Secondary [10.7] [29.0] 0.66 Tertiary [9.7] [29.5] 0.77 Trades [9.3] [30.1] 0.39 Employment status Employed [8.8] [23.4] 0.09 Not employed [12.5] [37.3] Position at work affected by bowel condition No [8.7] <0.01** [23.3] <0.01** Yes [9.6] [31.0] Days of leave taken >100 days [9.8] 0.012* [36.1]** <0.01** 100 days [9.7] [25.7] Disease groups Crohn s disease [Reference] [11.9] [28.0] Ulcerative colitis [8.7] 0.03* [25.6]* 0.04* Indeterminate colitis [16.3] [45.3] 0.85 FAP [13.6] [47.4] 0.25 Not Crohn s disease [9.5] 0.03* [27.9] Indications Failed medical therapy [Reference] [9.7] [27.5] Fulminant colitis/acute colitis [7.3] [22.3] 0.12 Dysplasia [9.7] [23.5] 0.76 FAP prophylaxis [13.6] 0.05* [47.4] 0.42 Other [0.7] [4.95] 0.09 Early complications No early complications [Reference] [9.4] [26.2] Haemorrhage [7.1] [13.2] 0.84 Small bowel obstruction [19.4] [45.3] <0.01** Wound infection [11.4] [29.3] 0.66 Pelvic sepsis [8.0] [10.1] <0.01 ** Any early grade 3 or 4 complications [8.7] <0.01** [26.3] <0.01** Any early complications [11.4] [33.0] 0.03* Late complications No late complications [Reference] [11.1] [27.1] Small bowel obstruction [9.9] [32.0] 0.10 Pouchitis [9.5] [27.5] 0.31 Abscess or fistula [9.4] [29.0] 0.10 Stricture [13.3] [38.7] 0.03* Pouch failure [all with stoma] [9.0] [30.2] 0.08 Any late complications [9.6] [28.6] 0.19 Average total costs [year 2013] $300NZ or more [10.5] <0.01** [27.9] <0.01** Less than $300NZ [8.2] [23.9]

6 Disability in RP with IPAA measured using IBD-DI 1383 Table 2. Continued Variable n for IBD-DI IBD-DI mean and SD p-value n for IBDQ IBDQ mean and SD p-value Average direct costs [year 2013] $300NZ or more [11.2] [29.7] 0.25 Less than $300NZ [9.4] [27.6] Average indirect costs [year 2013] $300NZ or more [9.9] <0.01** [27.7] <0.01** Less than $300NZ [9.1] [24.5] *p < 0.05; **p < n = sample size; IBD-DI = Inflammatory Bowel Disease Disability Index; IBDQ = Inflammatory Bowel Disease Questionnaire. Seven declined to answer for IBD-DI and four for IBDQ; four declined to answer for IBD-DI and one for IBDQ; normal t-test failed Levene s test for equality of variances so alternative p-value used on SPSS; eight declined to answer for IBD-DI and five for IBDQ; three declined to answer for IBD-DI; two unknown indications for IBD-DI and IBDQ; early complications unknown for one person so n = 83 for IBD-DI and n = 79 for IBDQ. what they perceive to be optimal. 28 The four general domains of QoL are [1] physical and occupational function, [2] psychological state, [3] social interaction and [4] somatic sensation. 29 In the past it has been asserted that RP with IPAA was associated with improved QoL 30,31 although a recent systematic review called this into question concluding that RP with IPAA showed little advantage over end ileostomy. 32 The variability of results from QoL studies and the recognition that QoL is a predominantly subjective measure of the impact of a disease have led to the development of instruments that objectively measure the disability associated with the disease state. Disability, defined by the World Health Organization International Classification of Impairments, Disabilities and Handicaps, is any restriction or lack [resulting from any impairment] of ability to perform an activity in the manner or within the range considered normal for a human being. 33 Disability is therefore associated with increased healthcare utilization as well as decreased work productivity. 4 In IBD, the most frequent indication for RP with IPAA, the IBD-DI, was recently developed by Peyrin-Biroulet et al. 3 The IBD-DI was first applied to an IBD cohort with intact colons by Allen et al. and found to be reliable and reproducible. 34 The IBD-DI addresses many of the functional issues faced by RP with IPAA patients, including frequency of bowel motions, presence of blood in stools, interference with sleeping, abdominal pain and body image. These factors give it face validity as an appropriate tool to assess disability in RP with IPAA patients in addition to IBD patients who have not undergone colectomy. In this study, the IBD-DI and IBDQ were compared and found to be highly correlated with each other. This reflects, in some part, the similarity between the IBDQ and IBD-DI as constructs. However, the imperfect correlation results from the objectivity associated with the disability measure. RP with IPAA carries a number of recognised short and long term complications. We previously demonstrated that having grade 3 or 4 Clavien Dindo perioperative complications was associated with reduced QoL at long-term follow-up. 2 The present study also found higher levels of disability at long-term follow-up in those patients who suffered significant [i.e. grade 3 or 4 Clavien Dindo] complications at the time of RP with IPAA. The indication for surgery is recognized as a predictor of subsequent complications in RP with IPAA, with FAP patients developing fewer strictures and less pouchitis. 35 Despite this, studies have not necessarily shown an impact on QoL related to RP with IPAA indication. A large series from the Cleveland clinic recently showed no difference in QoL scores between IBD and FAP pouch recipients. 1 Using the objective IBD-DI, this study showed FAP patients with RP with IPAA have less disability at long-term follow-up than their IBD counterparts, which is again more consistent with the current understanding of functional outcomes in these groups. The validity and objectivity of this measure was further supported by the association of the IBD-DI with total and indirect healthcare costs. Functional outcomes of RP with IPAA have been assessed in the past by recording individual functional variables, including total number of motions, nocturnal motions and incontinence. The IBD-DI gives a more global outcome of pouch function than individual variables. Other global scores specifically of pouch dysfunction are under development, 36 although another potential advantage of using the IBD-DI in this situation is the ability to compare it to nonsurgically treated groups. The comparison with medically treated UC patients suggested the RP with IPAA patients had lower levels of disability than their medically treated counterparts. However, these data were derived from a selected tertiary cohort and were recruited in the validation study to determine if there was a ceiling effect of the IBD-DI. As such the score may be biased to be higher than in the current study and may not be directly comparable. Moreover, only five patients on biological treatment were available for a comparison. Nevertheless, this observation illustrates the potential for comparison in appropriately matched groups Limitations and future directions Many of the eligible people were uncontactable; of the 136 RP with IPAAs performed in Christchurch since 1984, 29 [21.3%] were uncontactable. Nevertheless, the response rate among contactable and eligible people was high [88.5%]. This is the first application of the IBD-DI to a cohort of RP with IPAA patients and further validation on larger cohorts from other regions is required. One major shortcoming of the IBD-DI is that it must be implemented via interview and has not yet been validated for self-report. Future research should validate the IBD-DI for self-report to allow its more widespread use as an important outcome measure; until that time the IBDQ has a major advantage over the IBD-DI because it is self-reported. The IBDQ and IBD-DI have a number of similar constructs and hence the strong but imperfect correlation. This imperfect correlation and the varying associations found in the present study suggest the two scores are unique but overlapping. 5. Conclusions Disability in RP with IPAA recipients can be measured using the IBD-DI. Older age at surgery, perioperative complications and the indication for RP with IPAA are associated with higher levels of disability at long-term follow-up. Disability level predicts indirect healthcare-related costs incurred. Disability levels were lower in pouch patients than in an unselected group of medically managed UC patients. To make the IBD-DI more widely usable, it needs to be validated on further cohorts and in the context of self-report.

7 1384 Y. Lee et al. Funding This study received financial support from the Canterbury Bowel and Liver Trust. Conflict of Interest There are no conflicts of interest to declare. Author Contributions All authors were involved in [1] the conception and design of the study, or acquisition of data, or analysis and interpretation of data, [2] drafting the article or revising it critically for important intellectual content, and [3] final approval of the version to be submitted. Jonathan Williman provided statistical advice at the outset of the study but was not involved in the preparation of the final manuscript. Parts of this paper have been presented at the following conferences. As a poster: Koloproktologen-Kongress, Munich, Germany, March 10 12, 2016 [Poster translated into German]; the 11 th Annual Conference of the European Crohn s and Colitis Organisation, Amsterdam, Netherlands, March 16 19, As an oral presentation: The New Zealand Society of Gastroenterology Annual Scientific Meeting 2015, Rotorua, New Zealand, November 25 27, Supplementary Data Supplementary data are available at ECCO-JCC online. References 1. Fazio VW, Kiran R, Remzi F, et al. Ileal pouch anal anastomosis: analysis of outcome and quality of life in 3707 patients. Ann Surg 2013;257: McCombie A, Lee Y, Vanamala R, Gearry R, Frizelle F, McKay E, et al. Perioperative complications have long term impact on quality of life after restorative proctocolectomy. Medicine. In Press. 3. Peyrin-Biroulet L, Cieza A, Sandborn WJ, et al. Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health. 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