With this model we stratified the cohort into high and low risk groups, which corresponded to an overall positive predictive value (PPV) 31%, and negative predictive value (NPV) 96% by year 5 of follow-up (p<0.0001). To test this stratification criteria, the model was then applied to the external validation cohort and accurately predicted risk groups in this set with PPV 29%, NPV 93% by year 5 of follow-up (p<0.001). The final validated model was embedded in a web-based tool to calculate and illustrate patient-specific risk (figure 1). Conclusions We have designed and externally validated www. UC-CaRE.uk, a personalised AN risk prediction webtool to facilitate shared decision-making over the management of LGD.

Background Fatigue, pain and faecal incontinence are common in people with IBD. However, little is known about co-existence of these multiple symptoms, how they inter-relate and whether people want help for these symptoms. In qualitative interviews, patients have reported that these symptoms are often ignored in clinical consultations, where the focus is on inflammation, but that they are very bothered by these symptoms, even when disease is apparently in remission. The aim of this study was to determine the presence and relationship between fatigue, pain and incontinence in people with inflammatory bowel disease, and desire for intervention for these symptoms. Methods A purpose-designed survey (online or postal), incorporating validated tools and demographic details, was sent to unselected UK clinic and UK IBD-BioResource adult patients. When the covid-19 pandemic halted clinic recruitment, additional self-selected UK recruits were solicited via social media. Using the validated PROMIS tools, the following definitions were used for presence of symptoms: fatigue: PROMIS fatigue T-score of 60 or more; pain: PROMIS pain intensity T-score of 60 or more; PROMIS bowel incontinence: raw score of 50 or more. Participants also reported disease activity using the relevant PRO-2 score, IBD-Control, anxiety (GAD-7), depression (PHQ-9) and quality of life (EQ-5D-5L) which will all be reported elsewhere. Results A total of 8486 useable responses were received (7716 online, 770 postal). 4176 reported Crohn’s disease, 4255 had ulcerative colitis or other form of IBD. There were 3281 men and 4883 women. Median age was 51 years (range 18 - 92). 2550 (30%) reported fatigue, 1766 (21%) pain and 4565 (54%) faecal incontinence according to the above definitions; 925 (10.9%) reported having all three symptoms. Demographics by symptom are shown in Table 1. Table 2 reports those participants indicating the presence of each symptom and each combination of symptoms. Table 3 shows a summary of self-defined severity and impact of symptoms (scoring scale 0-10 for both severity and impact of each symptom). Participants scored severity and impact a mean between 3.3 and 4.8, with a wide variation. 56% of all respondents (not just those with symptoms) “definitely” wanted help for fatigue; 42% wanted help for pain; 53% wanted help for incontinence. 29% reported “definitely” wanting help for all three symptoms (Table 4). Conclusion This study confirms that fatigue, pain and urgency are common in IBD and for the first time reports the co-existence and unmet need for help with these symptoms.

Background: Patient-Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co-produce a PREM with IBD service users for IBD service evaluation and quality improvement programme. Methods: A pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a rankedchoice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in 'Think Aloud' interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM. Results: Stage 1 generated a draft working PREM mapped to the following four domains: Patient-Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from 'self-management' to 'living with IBD'. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD-relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified

Background The IBD Benchmarking Tool, comprising an online Service Self-Assessment and Patient Survey, has provided a unique and comprehensive picture of Inflammatory Bowel Disease (IBD) care across the UK. The aim was to evaluate current local service performance to facilitate future quality improvement. Methods The IBD Patient Survey (PS) ran from July to November 2019 and the Service Self-Assessment (SSA) from October 2019 to January 2020. Detailed views were collected of the quality of IBD care from patient and clinician perspectives, measured against the UK IBD Standards 2019.1 The IBD UK National Report will be published in April 2021. Results 10,222 patients completed the PS. 89% (9,100/10,222) had found it hard to cope with having Crohn’s or Colitis over the previous year. 72% (6,954/9,640) rated the quality of their care as excellent, very good or good and 28% (2,686/9,640) rated the quality of their care as fair or poor. The top three factors that predicted how highly people with IBD rated their quality of care were: feeling supported by a team of specialists; having regular reviews; and discussing wider life goals and priorities, as part of planning their care. 26% (535/2,089) had waited more than a year for their diagnosis. 41% (849/2,087) had visited Accident & Emergency at least once before being diagnosed. 32% (656/2,057) were not offered any information about their condition when diagnosed. 91% (8,284/9,099) did not have a personalised care plan. Over the previous 12 months, 70% (6,732/9,574) had one or more flares and 72% (1,622/2,250) of inpatient admissions were unplanned. A key finding from the SSA (166 centres: 134 adult, 32 paediatric) was that no adult IBD services reported meeting the IBD Standards’ recommendation for whole time equivalent (WTE) staffing across the IBD team. Where services reported meeting the WTE for IBD nurse specialists, patients were more likely to rate the quality of their care highly and to have regular clinical review of their Crohn’s or Colitis. Conclusion The results highlight four key areas for change: improvements in diagnosis and information provision; personalised care and support for self-management; faster access to specialist advice and treatment; and effective multidisciplinary team (MDT) working. The Report sets out recommendations for action in each of these areas. To our knowledge, this is the first time that healthcare professionals and patients have assessed care against a common set of standards. The IBD Benchmarking Tool provides location-matched service performance and patient experience as an exemplar for others to follow. Reference

Background There is increasing focus on the organisation of services for people with IBD. Patient experience of care is an important consideration in service delivery. The United Kingdom NHS Long Term Plan indicates the importance of support that is more differentiated for individuals, with more personalised care when needed, which starts with the question ‘What matters to you?”. This is particularly important for people with inflammatory bowel disease (IBD). Methods The aim was to identify ‘What matters to you?’ for people attending a single UK teaching centre IBD service and to relate it to patient experience and national standards of care. Invitations to take part in the AWARE-IBD quality improvement programme were sent to 4082 patients receiving IBD care at a single UK teaching centre in 2 rounds (October 2021 and May 2022). Invitation letters included an anonymous open-ended questionnaire asking patients “what matters to you?”. Responses were extracted as qualitative data and coded using two frameworks: Patient experience domains (Bull et al) (Communication, Patient-centred Care, Quality, Integration, Involvement, Accessibility, Environment and Facilities, Discomfort) and national IBD UK Standards. Frequencies for each coding strategy were calculated to determine the most important patient experience domains and IBD UK standards. Results Responses were received from 408 and 205 patients from each recruitment round (n=613). Figure 1 displays frequencies for each patient experience domain. Accessibility (47.5% and 53.2% respectively), Communication (19.6% and 12.7%) and Patient-Centred Care (15.7% and 11.2%) were expressed most frequently. Sub-themes included access to and contact with IBD nurse specialists, timely and accessible appointments and regular contact with a specialist IBD health care professional (HCP). Responses were coded to IBD UK standards, where possible (Table 1). Responses most frequently coded to statements relating to shared decision making, having a personalised care plan, access to an IBD nurse specialist including helpline and regular clinical review. 77 responses could not be coded to an IBD UK standard. Conclusion Access to the IBD service when needed matters most to patients with good communication of information and personalised, patient-centred care. Service organisation should therefore reflect these facets of patient experience and defined standards. Patient views that are not currently represented in published standards should be considered in future iterations. This study also highlights personalised written care plans and improved access to the IBD Nurse Advice line.