Patients with inflammatory bowel disease (IBD) remain at increased risk for colorectal cancer and death from colorectal cancer compared with the general population despite improvements in inflammation control with advanced therapies, colonoscopic surveillance and reductions in environmental risk factors. This guideline update from 2010 for colorectal surveillance of patients over 16 years with colonic inflammatory bowel disease was developed by stakeholders representing UK physicians, endoscopists, surgeons, specialist nurses and patients with GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodological support.An a priori protocol was published describing the approach to three levels of statement: GRADE recommendations, good practice statements or expert opinion statements. A systematic review of 7599 publications, with appraisal and GRADE analysis of trials and network meta-analysis, where appropriate, was performed. Risk thresholding guided GRADE judgements.We made 73 statements for the delivery of an IBD colorectal surveillance service, including outcome standards for service and endoscopist audit, and the importance of shared decision-making with patients.Core areas include: risk of colorectal cancer, IBD-related post-colonoscopy colorectal cancer; service organisation and supporting patient concordance; starting and stopping surveillance, who should or should not receive surveillance; risk stratification, including web-based multivariate risk calculation of surveillance intervals; colonoscopic modalities, bowel preparation, biomarkers and artificial intelligence aided detection; chemoprevention; the role of non-conventional dysplasia, serrated lesions and non-targeted biopsies; management of dysplasia, both endoscopic and surgical, and the structure and role of the multidisciplinary team in IBD dysplasia management; training in IBD colonoscopic surveillance, sustainability (green endoscopy), cost-effectiveness and patient experience. Sixteen research priorities are suggested.
ObjectivesPriority Setting Partnerships (PSP's) using the James Lind Alliance (JLA) methodology, bring together health professionals, patients and parents/carers to identify and prioritise unanswered questions that can be addressed by future research projects. To identify and prioritise the top 10 unanswered research priorities in digital technology for adolescents and young people (AYP) with inflammatory bowel disease (IBD).MethodsA steering group (SG) consisting of AYP with IBD, their parents/carers, representatives from two charities (Crohn's & Colitis UK, Crohn's in Childhood Research Association), patient information forum and paediatric and adult and primary care healthcare professionals was established in 2021. The SG agreed the protocol, and scope of the PSP and oversaw all aspects. SG meetings were chaired by a JLA advisor and followed the established JLA methodology.ResultsThe initial survey generated 414 in-scope questions from 156 respondents, thematically categorised into 10 themes and consolidated into 92 summary questions by the SG. A comprehensive literature review followed by SG deliberation narrowed the unanswered summary questions to 45, for the interim prioritising survey. One hundred and two respondents ranked their top 10 research questions. Outputs generated top 18 research priorities presented at a final virtual prioritisation workshop, facilitated by JLA advisors and attended by key stakeholders, ranked into top 10 research priorities.DiscussionThe top 10 research priorities will encourage researchers to undertake research that addresses these areas of unmet need for AYP living with IBD, their parents/carers and their healthcare professionals, thereby facilitating improved patient care. image The top 10 research priorities determined by this Priority Setting Partnerships on Digital Technology for Adolescents and Young Persons with IBD, will encourage researchers to undertake research that addresses these areas of unmet need thereby facilitating improved patient care.What is Known?Priority Setting Partnerships using the James Lind Alliance methodology, bring together health professionals, patients and parents/carers to identify and prioritise unanswered questions that can be addressed by future research projects.Yet, the development of digital technological tools in delivering inflammatory bowel disease (IBD) clinical care, has so far been largely driven by clinical teams and developers.
IntroductionThe evolving landscape of inflammatory bowel disease (IBD) necessitates refining colonoscopic surveillance guidelines. This study outlines methodology adopted by the British Society of Gastroenterology (BSG) Guideline Development Group (GDG) for updating IBD colorectal surveillance guidelines.Methods and analysisThe ‘Grading of Recommendations, Assessment, Development and Evaluation’ (GRADE) approach, as outlined in the GRADE handbook, was employed. Thematic questions were formulated using either the ‘patient, intervention, comparison and outcome’ format or the ‘current state of knowledge, area of interest, potential impact and suggestions from experts in the field’ format. The evidence review process included systematic reviews assessed using appropriate appraisal tools. An extensive list of potential outcomes was compiled from literature and expert consultations and then ranked by GDG members. The top outcomes were identified for evidence synthesis in three key areas: utility of surveillance in IBD, quality of bowel preparation and use of advanced imaging techniques in colonoscopy for IBD. Risk thresholding exercises determined specific risk levels for different surveillance strategies and intervals. This approach enabled the GDG to establish precise thresholds for interventions based on relative and absolute risk assessments, directly informing the stratification of surveillance recommendations. Significance of effect sizes (small, moderate, large) will guide the final GRADE assessment of the evidence.Ethics and disseminationEthics approval is not applicable. By integrating clinical expertise, patient experiences and innovative methodologies like risk thresholding, we aim to deliver actionable recommendations for IBD colorectal surveillance. This protocol, complementing the main guidelines, offers GDGs, clinical trialists and practitioners a framework to inform future research and enhance patient care and outcomes.
Background Key performance indicators (KPIs) are required to facilitate quality improvement for inflammatory bowel disease (IBD). Emergency admissions for IBD may represent a possible KPI. Methods IBD emergency admissions for 2018–2019 from Hospital Episodes Statistics for England were compared per population and per IBD cases with patient-reported quality of care from the IBD Patient Survey 2019. Patient-reported accident and emergency (A&E) attendances and hospital admissions for IBD were also compared with patient-reported quality of care. Results For 124 IBD services within England we found only a weak and not statistically significant correlation between IBD admissions per 100 000 population and patient-rated quality of care (Spearman’s rho=0.171; p=0.057). Similarly, there was no significant correlation between IBD admissions per case and patient-rated quality of care (Spearman’s rho=0.164; p=0.113). Patients with ≥2 A&E attendances (OR: 0.72, 95% CI: 0.57 to 0.91; p<0.001) were less likely to report quality of IBD care as good or very good compared with those without A&E attendances. Patients with ≥2 admissions were less likely to rate their care as good or very good (OR: 0.75, 95% CI: 0.65 to 0.88; p<0.0001) compared with those without hospital admissions. Conclusions There is a clear association for individual patients with ≥2 admissions or A&E attendances with a lower perceived quality of care. In contrast we found no correlation on a per-unit basis for IBD admissions derived from Hospital Episode Statistics with patient-assessed quality of care. Further work is required to determine whether hospital admissions could be a useful KPI for IBD.
Abstract 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.
Background and aimsHealthcare quality improvement (QI) is the systematic process to continuously improve the quality of care and outcomes for patients. The landmark Inflammatory Bowel Disease (IBD) UK National Audits provided a means to measure the variation in care, highlighting the need to define the standards of excellence in IBD care. Through a consensus approach, we aimed to establish key performance indicators (KPIs), providing reliable benchmarks for IBD care delivery in UK. MethodsKPIs that measure critical aspects of a patient journey within an IBD service were identified though stakeholder meetings. A two-stage Delphi consensus was then conducted. The first involved a multidisciplinary team of IBD clinicians and patients to refine definitions and methodology. The second stage assessed feasibility and utility of the proposed QI process by surveying gastroenterology services across UK. ResultsFirst, the four proposed KPIs were refined and included time from primary care referral to diagnosis in secondary care, time to treatment recommendation following a diagnosis, appropriate use of steroids and advanced therapies prescreening and assessment. Second, the Delphi consensus reported >85% agreement on the feasibility of local adoption of the QI process and >75% agreement on the utility of benchmarking of the KPIs. ConclusionsThrough a structured approach, we propose quantifiable KPIs for benchmarking to improve and reduce the individual variation in IBD care across the UK.
At the start of the SARSCoV2 pandemic, we and others produced guidance for people living with IBD and their clinical teams on behalf of the British Society of Gastroenterology. This included publication of a risk grid based on key variables that were believed to increase the risk of adverse COVID19 outcomes. The grid has been widely adopted providing a useful framework for patients, clinicians and policymakers but is now no longer relevant and should not be used. The risk grid was the basis for categorisation into clinically vulnerable and extremely clinically vulnerable grouping informing those who should follow ‘shielding’ recommendations. It subsequently informed prioritisation for vaccination against SARSCoV2 and more recently use of antivirals and monoclonal antibody therapies directed against SARSC0V2 . We developed the grid in April 2020 based on early information about the risk of severe COVID19 outcomes and extrapolated from preexisting data about the risk of severe infection in patients with IBD. With hindsight, the key groupings, set 2 years ago, appear to have largely been accurate. The risk of severe COVID19 is higher in older people, males, obesity and other major comorbidities. Crohn’s disease and ulcerative colitis are not inherently associated with increased risk of severe outcomes as shown by the OpenSafely platform. Corticosteroids and active IBD both appear to increase risk although no study has managed to conclusively or mechanistically clarify this relationship. Other commonly used IBD therapies (antitumour necrosis factor (TNF) (unless used in combination with thiopurines), antiIL12/23, Janus Kinase inhibitors) do not appear to impart an increased risk, in contrast to rituximab, an antibody that depletes B cells, used in rheumatology. Vaccination against SARSCoV2 has uncoupled symptomatic infection and poor outcomes (hospitalisation, Intensive Care Unit admission and death). The 'ImpaCt of bioLogic therApy on saRscov2 Infection and immuniTY' (CLARITY) and 'Vaccination immunogenicity in Immunosuppressed inflammatory bowel disease Patients' (VIP) studies provided critical observations about the immune response and effectiveness of vaccination in patients with IBD informing policy in the UK and beyond. We have shown that antibody responses are attenuated and less durable in patients treated with antiTNF therapy, and to a lesser extent with tofacitinib, but not with thiopurines. Antiviral T cell responses are largely intact. After two primary doses of vaccine, breakthrough and reinfection with SARSCoV2 are more common in antiTNFtreated patients compared with vedolizumab. Reassuringly, like the general population, severe infection after a full course of vaccination in antiTNFtreated patients is rare. Nevertheless, antiTNFtreated patients should continue to accept booster doses to overcome this effect. The velocity of the pandemic has recently shifted, with two waves of Omicron starting with the emergence of BA.1 in November 2021. This variant is highly transmissible but associated with reduced severity. More recently, the BA.2 variant of Omicron is driving a further wave of symptomatic COVID19 infections and an increase in hospitalisations, as almost all COVID19 restrictions are lifted in the UK and many other countries. A booster dose of mRNA vaccine after either ChAdOx1 nCoV19 or BNT162b2 has been shown to provide protection against symptomatic Omicron infection, although this wanes over time. The protection against severe outcomes is likely to be prolonged. Where does this leave IBD patients today? We want to reassure patients that for the vast majority there is no increased risk of adverse COVID19 outcomes. The major potential risk to date has been of inadequate vaccination responses, which have been largely overcome by adjusted primary vaccine schedules, boosters and availability of antivirals. We, therefore, predict that the disruption from the pandemic for individuals with IBD will largely now be no different to the general population. Therefore, with all of this in mind, it is the right time to discontinue the risk grid.
Background Digital healthcare (DHC) is a rapidly expanding area of healthcare and offers significant opportunities to transform Inflammatory Bowel Disease (IBD) care. DHC cover a wide range of technologies, including and not exclusive to apps, podcasts, websites, social media and patient controlled electronic medical platforms. Application digital technology (DT) in clinical practice should be supported by research evidence. A Priority Setting Partnership (PSP) was set up in collaboration with the James Lind Alliance (JLA), a non-profit organisation, to prioritise research topics that young people with IBD, their carers, and their clinicians consider important for evidence-based implementation of DT in IBD. Aim To create a survey designed to identify the unanswered questions or evidence uncertainties in the use of DT for adolescents and young persons with IBD. Methods PSP meetings were attended by key stakeholders as a Steering Group (SG): paediatric and adult gastroenterologists with an interest in adolescent and young person care from BSPGHAN and BSG respectively, IBD clinical nurse specialists, representatives from the IBD charities CICRA and CCUK and patient and parent representatives. The survey was designed through an iterative process at a series of meetings. The survey was considered complete when there was saturation of changes and the approval by all stakeholders. Readability was assessed by the Flesch-Kincaid Reading Ease test (a measure of average sentence length average number of syllables per word) and Flesch-Kincaid Grade Level test on Microsoft Word. Methods of dissemination were discussed and agreed. Results The final survey consists of three sections. The first captures roles and connection of IBD to the individual completing the survey. The second invites participants to submit questions about DT in two areas: DT to support their condition and improve IBD care, and DT to improve communication with the healthcare team. Questions are open-ended to allow participants to elaborate on their answers. Due to the vast range of DT and potential questions, examples were provided to assist individuals with answering, including the example of a mobile app for recording symptoms and disease activity. The final section for demographic data is optional and will not be linked to responses in sections 1 or 2. Finally, participants are invited to be involved after the survey closes to help with further stages in the prioritisation process. The final survey is shown in figure 1. The Reading ease test score is 61 (good scores 60 to 70) and Flesch-kinaid grade level is 8.1 (optimal scores 7.0 to 8.0). The survey was approved by the patients within the SG. Conclusion A SG with wide representation for a PSP on DT in IBD was created. As a first step to identify unanswered questions or uncertainties, a readable survey was developed. Research priorities will be identified using the JLA methodology and these will galvanise research on DT to improve disease outcomes and quality of life. DIGITAL TECHNOLOGY FOR ADOLESCENTS AND YOUNG PERSONS WITH INFLAMMATORY BOWEL DISEASE A Priority Setting Partnership (PSP) in collaboration with the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN), British Society of Gastroenterology (BSG) and the James Lind Alliance (JLA) WHO ARE WE? We are a group of patients, carers, healthcare professionals and researchers who are passionate about improving the care and quality of life of people living with inflammatory bowel diseases (IBD) such as ulcerative colitis and Crohn's disease. Together, we are collaborating on a project called a Priority Setting Partnership (PSP), to identify the top 10 research priorities for digital technology in adolescents and young persons with IBD. WHAT ARE WE DOING? There are huge opportunities to transform IBD care with digital technologies, but we need to understand the impact that technologies will have and how to best use them. Digital technologies may include apps, podcasts, websites, social media and patient controlled electronic medical platforms. We are asking people up to and including the age of 25 who are affected by IBD; their families, carers and friends; health and social care professionals to help us identify the top 10 questions that need to be answered by research in this area. WHY DO WE NEED YOUR HELP? We would like to hear from you if you are: an adolescent or young person up to and including the age of 25 with IBD a parent, carer or friend supporting an adolescent or young person with IBD a health or social professional involved in the care of IBD patients Your views will ensure that we focus on the needs of adolescents and young persons living with the condition and guide future research. WHAT DO I HAVE TO DO? We are asking you to complete a short 10-minute survey. You don't have to be an expert in technology to take part. Ask us questions about the use of digital technologies based on your experience of living with IBD or supporting someone with the condition. WHAT HAPPENS AFTER THE SURVEY? We will look at all the questions that have been asked in the survey and check that they align with this project. For the questions that have not been answered already by research, we would welcome you would help to put these into order of priority. Please leave your contact details at the end if you wish to be involved in this part. Finally, we will come up with a list of the top 10 research priorities which will be publicised to researchers and organisations that fund IBD research. WHAT WILL HAPPEN WITH MY INFORMATION? By taking part in this survey, you give us consent to use your anonymized answers and publish these in our project report. We take your privacy seriously so we will not be able to personally identify you. You may also leave contact details at the end if you would like to continue to help with this project (optional). Personal contact details will be kept confidential. THERE ARE THREE SECTIONS TO THIS SURVEY Section 1: This asks about who you are to help us understand your role and how you're connected with IBD. Section 2: We would like you to ask questions about the use of digital technology in 2 broad areas. You may wish to focus on just one area or both: Questions about digital technologies to support your condition and have the potential to improve IBD care. These technologies help your healthcare team with making decisions about diagnosis, treatment, and clinical care. They may also help you self-manage IBD, promote healthier ways of living and monitor your progress. Examples include mobile apps for recording your symptoms and disease activity or provide information. Questions about the use of digital technologies to improve communication with your healthcare team. These technologies help to improve the two-way communication between you and the health professionals who look after you. Examples included instant messaging portals and video consultations that link you to healthcare teams. Section 3 (optional): This asks for additional background information about you to help us understand who you are and to ensure that we have captured a range of different experiences. These answers will not be linked to your responses in section 1 and 2. SECTION 1: ABOUT YOU It is important to know who you are, the person filling in the form, and how you are connected to IBD. Which of the following describes you best? □I am an adolescent or young person with IBD □I am a parent or have experience as a carer of an adolescent or young person with IBD □I am a family member of an adolescent or young person with IBD □I am a friend of an adolescent or young person with IBD □I am a healthcare professional who looks after adolescents or young persons with IBD □I am a member of an organisation or charity representing persons with IBD □Other – please state…………….. SECTION 2: YOUR QUESTIONS Write down 3 questions that you would like to see answered about the use digital technology in inflammatory bowel disease. This can be in the form of a sentence or a question. You do not have to fill in all of the sections if you don't want to. My first question/comment My second question/comment My third question/comment Please write down any other questions/concerns in the box below if you'd like to SECTION 3: ADDITIONAL INFORMATION ABOUT YOU (OPTIONAL) This optional but it is important to understand who is filling out the form to ensure that we have collected views from a range of people with varied experiences. 1. What is your age? □ <16 □ 16–25 □ 26–39 □ 40–59 □ 60–79 □ 80+ □ I prefer not to say 2. Which of the following best describes your gender? □ Boy/man □ Girl/woman □ Non-binary □ I prefer not to say □ I prefer to self-describe, please state………. 3. What is your ethnic group? Asian or Asian British □ Bangladeshi □ Chinese □ Indian □ Pakistani □ Any other Asian background, please describe………….. Black/African/Caribbean/Black British □ African □ Caribbean □ Any other Black/African/Caribbean background, please describe…… Mixed/Multiple ethnic groups □ Asian and White □ Black Caribbean and White □ Black African and White □ Any other mixed/Multiple ethnic background, please describe………. White □ English/Welsh/Scottish/Northern Irish/British □ Gypsy or Irish Traveller □ Irish □ Any other White background, please describe…….. Any other ethnic group □ Arab □ Any other ethnic group, please describe………… □ Prefer not to say 4. Where do you live? □ England □ Wales □ Scotland □ Northern Ireland □ I prefer not to say WOULD YOU LIKE TO HELP US WITH THE NEXT STEP? Once the survey has closed, we would like to get back in touch with the people who completed this survey for help with collating research questions into order of importance or urgency. If you would like to take part in this stage, please add your contact details below. Thank you for completing the survey. If you have any questions or would like any further information, please contact:………………………………
SARS-CoV-2 has caused a global health crisis and mass vaccination programmes provide the best opportunity for controlling transmission and protecting populations. Despite the impressive clinical trial results of the BNT162b2 (Pfizer/BioNTech), ChAdOx1 nCoV-19 (Oxford/AstraZeneca), and mRNA-1273 (Moderna) vaccines, important unanswered questions remain, especially in patients with pre-existing conditions. In this position statement endorsed by the British Society of Gastroenterology Inflammatory Bowel Disease (IBD) section and IBD Clinical Research Group, we consider SARS-CoV-2 vaccination strategy in patients with IBD. The risks of SARS-CoV-2 vaccination are anticipated to be very low, and we strongly support SARS-CoV-2 vaccination in patients with IBD. Based on data from previous studies with other vaccines, there are conceptual concerns that protective immune responses to SARS-CoV-2 vaccination may be diminished in some patients with IBD, such as those taking anti-TNF drugs. However, the benefits of vaccination, even in patients treated with anti-TNF drugs, are likely to outweigh these theoretical concerns. Key areas for further research are discussed, including vaccine hesitancy and its effect in the IBD community, the effect of immunosuppression on vaccine efficacy, and the search for predictive biomarkers of vaccine success.