Top 10 research priorities for digital technology for adolescents and young persons with inflammatory bowel disease: Results of a James Lind Alliance Priority Setting Partnership.

OBJECTIVES: Priority 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). METHODS: A 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. RESULTS: The 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. DISCUSSION: The 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.

Inflammatory bowel disease patient-reported quality assessment should drive service improvement: a national survey of UK IBD units and patients.

BACKGROUND: Healthcare service provision in inflammatory bowel disease (IBD) is often designed to meet targets set by healthcare providers rather than those of patients. It is unclear whether this meets the needs of patients, as assessed by patients themselves. AIMS: To assess patients' experience of IBD and the healthcare they received, aiming to identify factors in IBD healthcare provision associated with perceived high-quality care. METHODS: Using the 2019 IBD standards as a framework, a national benchmarking tool for quality assessment in IBD was developed by IBD UK, comprising a patient survey and service self-assessment. RESULTS: 134 IBD services and 9757 patients responded. Perceived quality of care was lowest in young adults and increased with age, was higher in males and those >2 years since diagnosis. No hospital services met all the national IBD standards for recommended workforce numbers. Key metrics associated with patient-reported high- quality care were: identification as a tertiary centre, patient information availability, shared decision- making, rapid response to contact for advice, access to urgent review, joint medical/surgical clinics, and access to research (all p < 0.001). Higher numbers of IBD nurse specialists in a service was strongly associated with patients receiving regular reviews and having confidence in self-management and reporting high- quality care. CONCLUSIONS: This extensive patient and healthcare provider survey emphasises the importance of aspects of care less often measured by clinicians, such as communication, shared decision- making and provision of information. It demonstrates that IBD nurse specialists are crucial to meeting the needs of people living with IBD.

Scoping review with textual narrative synthesis of the literature reporting stress and burn-out in specialist nurses: making the case for inflammatory bowel disease nurse specialists.

OBJECTIVE: Inflammatory bowel disease clinical nurse specialists (IBD-CNSs) face increasing pressures due to rising clinical and patient demands, advanced complexity of work role, and minimal specialist management training and support. Stress and burn-out could undermine the stability of this workforce, disrupting clinical provision. We reviewed the literature on stress and burn-out to demonstrate the lack of evidence pertinent to IBD-CNSs and make the case for further research. DESIGN: Following Levac et al's scoping review framework, relevant databases were searched for publications reporting work-related stress and burn-out among specialist nurses. Following screening and consensus on selection of the final articles for review, all authors contributed to data charting. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review extension guided reporting of the review. RESULTS: Of 194 retrieved articles, eight were eligible for review. None focused on IBD-CNSs, were qualitative, or UK-based. Three core themes were identified: Rates of Burn-out, Mitigating and Alleviating Factors, and Preventing and Resolving Burn-out. Risk of burn-out is greatest in novice and mid-career CNSs. Age and duration in role appear protective. Personal achievement is also protective and can mitigate earlier episodes of burn-out; opportunities for career progression are limited. Promoting personal well-being is beneficial. Senior managers have poor understanding of the role and provide inadequate support. Commitment to patients remains high. CONCLUSION: Burn-out arises in CNSs across clinical specialisms in the international literature and has a significant negative effect on the workforce. Further research is needed to address the dearth of evidence on burn-out in IBD-CNSs in the UK.

Specialist inflammatory bowel disease nursing in the UK: current situation and future proofing.

OBJECTIVE: To determine the impact to date of the ongoing Crohn's & Colitis UK inflammatory bowel disease (IBD) clinical nurse specialists (CNS) campaign. METHODS: A survey-based design was used. 2 questionnaires were sent to the UK IBD nursing community and promoted via nursing and clinical networks. Respondents were asked to provide data at both an individual and trust level about their nursing services. RESULTS: 394 IBD CNS posts were identified across the UK, with a 32% increase in posts since the start of the campaign. 27% felt the campaign had been influential in securing new posts. Greater numbers of posts were reported in England when compared with the devolved nations. Most services remain below the UK standards recommendation of 2.5 IBD CNS per 250 000 patient population. Cross site working was reported in 59% of services. 45% of respondents were non-medical prescribers, with 13% educated to MSc level. High levels of stress were reported by IBD CNS associated with managing advice line services. CONCLUSIONS: Crohn's & Colitis UK's 'More IBD Nurses-Better Care' campaign has contributed to the numbers of CNS posts in IBD continuing to rise, but they remain lower than the recommended standard of 2.5 IBD CNS per 250 000. Educational and career pathways are not clearly defined, and aspects of the role such as advice line provision contribute to stress within the workforce. The ongoing aims of the charity campaign hope to address these issues by improving access to formal education pathways with peer support for IBD specialist nurses, and advice line training, in addition to supporting trusts and services throughout the UK to reduce the workforce deficit with effective business cases.

Organisational changes and challenges for inflammatory bowel disease services in the UK during the COVID-19 pandemic.

OBJECTIVE: To determine the challenges in diagnosis, monitoring, support provision in the management of inflammatory bowel disease (IBD) patients and explore the adaptations of IBD services. METHODS: Internet-based survey by invitation of IBD services across the UK from 8 to 14 April 2020. RESULTS: Respondents from 125 IBD services completed the survey. The number of whole-time equivalent gastroenterologists and IBD nurses providing elective outpatient care decreased significantly between baseline (median 4, IQR 4-7.5 and median 3, IQR 2-4) to the point of survey (median 2, IQR 1-4.8 and median 2, IQR 1-3) in the 6-week period following the onset of the COVID-19 pandemic (p<0.001 for both comparisons). Almost all (94%; 112/119) services reported an increase in IBD helpline activity. Face-to-face clinics were substituted for telephone consultation by 86% and video consultation by 11% of services. A variation in the provision of laboratory faecal calprotectin testing was noted with 27% of services reporting no access to faecal calprotectin, and a further 32% reduced access. There was also significant curtailment of IBD-specific endoscopy and elective surgery. CONCLUSIONS: IBD services in the UK have implemented several adaptive strategies in order to continue to provide safe and high-quality care for patients. National Health Service organisations will need to consider the impact of these changes in current service delivery models and staffing levels when planning exit strategies for post-pandemic IBD care. Careful planning to manage the increased workload and to maintain IBD services is essential to ensure patient safety.

Adaptations to the British Society of Gastroenterology guidelines on the management of acute severe UC in the context of the COVID-19 pandemic: a RAND appropriateness panel.

OBJECTIVE: Management of acute severe UC (ASUC) during the novel COVID-19 pandemic presents significant dilemmas. We aimed to provide COVID-19-specific guidance using current British Society of Gastroenterology (BSG) guidelines as a reference point. DESIGN: We convened a RAND appropriateness panel comprising 14 gastroenterologists and an IBD nurse consultant supplemented by surgical and COVID-19 experts. Panellists rated the appropriateness of interventions for ASUC in the context of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) infection. Median scores and disagreement index (DI) were calculated. Results were discussed at a moderated meeting prior to a second survey. RESULTS: Panellists recommended that patients with ASUC should be isolated throughout their hospital stay and should have a SARS-CoV-2 swab performed on admission. Patients with a positive swab should be discussed with COVID-19 specialists. As per BSG guidance, intravenous hydrocortisone was considered appropriate as initial management; only in patients with COVID-19 pneumonia was its use deemed uncertain. In patients requiring rescue therapy, infliximab with continuing steroids was recommended. Delaying colectomy because of COVID-19 was deemed inappropriate. Steroid tapering as per BSG guidance was deemed appropriate for all patients apart from those with COVID-19 pneumonia in whom a 4-6 week taper was preferred. Post-ASUC maintenance therapy was dependent on SARS-CoV-2 status but, in general, biologics were more likely to be deemed appropriate than azathioprine or tofacitinib. Panellists deemed prophylactic anticoagulation postdischarge to be appropriate in patients with a positive SARS-CoV-2 swab. CONCLUSION: We have suggested COVID-19-specific adaptations to the BSG ASUC guideline using a RAND panel.

Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK.

OBJECTIVE: Symptoms and clinical course during inflammatory bowel disease (IBD) vary among individuals. Personalised care is therefore essential to effective management, delivered by a strong patient-centred multidisciplinary team, working within a well-designed service. This study aimed to fully rewrite the UK Standards for the healthcare of adults and children with IBD, and to develop an IBD Service Benchmarking Tool to support current and future personalised care models. DESIGN: Led by IBD UK, a national multidisciplinary alliance of patients and nominated representatives from all major stakeholders in IBD care, Standards requirements were defined by survey data collated from 689 patients and 151 healthcare professionals. Standards were drafted and refined over three rounds of modified electronic-Delphi. RESULTS: Consensus was achieved for 59 Standards covering seven clinical domains; (1) design and delivery of the multidisciplinary IBD service; (2) prediagnostic referral pathways, protocols and timeframes; (3) holistic care of the newly diagnosed patient; (4) flare management to support patient empowerment, self-management and access to specialists where required; (5) surgery including appropriate expertise, preoperative information, psychological support and postoperative care; (6) inpatient medical care delivery (7) and ongoing long-term care in the outpatient department and primary care setting including shared care. Using these patient-centred Standards and informed by the IBD Quality Improvement Project (IBDQIP), this paper presents a national benchmarking framework. CONCLUSIONS: The Standards and Benchmarking Tool provide a framework for healthcare providers and patients to rate the quality of their service. This will recognise excellent care, and promote quality improvement, audit and service development in IBD.

British Society of Gastroenterology guidance for management of inflammatory bowel disease during the COVID-19 pandemic.

The COVID-19 pandemic is putting unprecedented pressures on healthcare systems globally. Early insights have been made possible by rapid sharing of data from China and Italy. In the UK, we have rapidly mobilised inflammatory bowel disease (IBD) centres in order that preparations can be made to protect our patients and the clinical services they rely on. This is a novel coronavirus; much is unknown as to how it will affect people with IBD. We also lack information about the impact of different immunosuppressive medications. To address this uncertainty, the British Society of Gastroenterology (BSG) COVID-19 IBD Working Group has used the best available data and expert opinion to generate a risk grid that groups patients into highest, moderate and lowest risk categories. This grid allows patients to be instructed to follow the UK government's advice for shielding, stringent and standard advice regarding social distancing, respectively. Further considerations are given to service provision, medical and surgical therapy, endoscopy, imaging and clinical trials.

Quality of Care Standards in Inflammatory Bowel Diseases: a European Crohn's and Colitis Organisation [ECCO] Position Paper.

The management of inflammatory bowel disease [IBD] is complex, and requires tight control of disease activity, close monitoring to avoid treatment side effects, health care professionals with expertise in IBD, and an interdisciplinary, holistic approach. Despite various efforts to standardise structures, processes, and outcomes,1-8 and due to the high variability at the local, national, and international levels, there are still no clear definitions or outcome measures available to establish quality of care standards for IBD patients which are applicable in all contexts and all countries. For this reason, the European Crohn's and Colitis Organisation [ECCO] supported the construction of a list of criteria summarising current standards of care in IBD. The list comprises 111 quality standard points grouped into three main domains [structure n = 31, process n = 42, outcomes n = 38] and is based on scientific evidence, interdisciplinary expert consensus, and patient-oriented perspectives. The list of proposed criteria is intended to represent the position of ECCO regarding the optimum quality of care that should be available to patients. Since health care systems and regulations vary considerably between countries, this list may require adaptation at local and national levels. It is recognised that not all these criteria that have been identified as optimal will be available in every unit. However, ECCO will continue its efforts to develop and coordinate projects and initiatives that will help to guarantee optimal quality of care for all IBD patients.

'Quality of Care' Standards in Inflammatory Bowel Disease: A Systematic Review.

BACKGROUND: Inflammatory bowel disease [IBD] includes chronic, disabling and progressive conditions that need a complex approach and management. Although several attempts have been made to standardize the care of IBD patients, no clear definitions of a global 'standard of care' are currently available. METHODS: We performed a systematic review of the available literature, searching for all relevant data concerning three main domains of standards of quality of care in IBD patients: structure, process and outcomes. From the literature search, 2394 abstracts were retrieved, and 62 relevant papers were included in the final review. RESULTS: Standards of quality of care in IBD include several aspects that can be summarized in three identified domains: structure, process and outcomes. The suggested structure of an IBD Unit includes a multi-disciplinary approach, effective referral processes, improved access using helplines, and departmental guidelines/pathways with identification of measurable quality indicators. Coordinated care models which incorporate a multi-disciplinary approach, structured clinical pathways or processes for the diagnosis, monitoring and treatment of IBD, fast-track recovery from IBD surgery, designated IBD clinics, virtual clinics and telemanagement are currently considered the main standards for process, although supporting data are limited. Several consensus statements on outcomes and quality indicators have been reported, focusing on outcomes in symptoms, function and quality of life restoration, survival and disease control, in addition to effective healthcare utilization. CONCLUSIONS: The results of this systematic review can provide the basis for general recommendations for standards of quality of care in IBD.

An overview of inflammatory bowel disease.

Inflammatory bowel disease (IBD) is a term that refers to two main conditions: Crohn's disease and ulcerative colitis. It is a lifelong inflammatory disorder that affects the gastrointestinal tract. Managing IBD requires a multidisciplinary team approach, and specialist IBD nurses have an important role in this, providing education, support and advocacy to patients with IBD. This article provides an overview of the symptoms of Crohn's disease and ulcerative colitis, as well as the medical, nutritional and surgical management strategies that can be used. It discusses the nurse's role in management and the importance of using a multidisciplinary team approach to provide optimum patient care and support.

Guidelines for the management of inflammatory bowel disease in adults.

The management of inflammatory bowel disease represents a key component of clinical practice for members of the British Society of Gastroenterology (BSG). There has been considerable progress in management strategies affecting all aspects of clinical care since the publication of previous BSG guidelines in 2004, necessitating the present revision. Key components of the present document worthy of attention as having been subject to re-assessment, and revision, and having direct impact on practice include: The data generated by the nationwide audits of inflammatory bowel disease (IBD) management in the UK in 2006, and 2008. The publication of 'Quality Care: service standards for the healthcare of people with IBD' in 2009. The introduction of the Montreal classification for Crohn's disease and ulcerative colitis. The revision of recommendations for the use of immunosuppressive therapy. The detailed analysis, guidelines and recommendations for the safe and appropriate use of biological therapies in Crohn's disease and ulcerative colitis. The reassessment of the role of surgery in disease management, with emphasis on the importance of multi-disciplinary decision-making in complex cases. The availablity of new data on the role of reconstructive surgery in ulcerative colitis. The cross-referencing to revised guidelines for colonoscopic surveillance, for the management of metabolic bone disease, and for the care of children with inflammatory bowel disease. Use of the BSG discussion forum available on the BSG website to enable ongoing feedback on the published document http://www.bsg.org.uk/forum (accessed Oct 2010). The present document is intended primarily for the use of clinicians in the United Kingdom, and serves to replace the previous BSG guidelines in IBD, while complementing recent consensus statements published by the European Crohn's and Colitis Organisation (ECCO) https://www.ecco-ibd.eu/index.php (accessed Oct 2010).

Talking about life and IBD: A paradigm for improving patient-physician communication.

Despite recent awareness and understanding of quality of life (QOL) issues in IBD, nearly half of physicians in Europe do not ask their IBD patients about their QOL and nearly half of patients do not initiate a conversation with their physicians about QOL, according to a recent survey by the European Federation of Crohn's and Colitis Associations (EFCCA) [S. Ghosh and R. Mitchell, Impact of inflammatory bowel disease on quality of life: results of the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) patient survey. J Crohn's Colitis. 2007;1(1):10-20.]. Effective treatment has been shown to help improve QOL in Crohn's disease patients [E.V. Loftus, J.F. Colombel, R. Panaccione, et al, Adalimumab sustains qualify-of-life improvements in patients with Crohn's disease: 2-year data from CHARM [P078]. Poster abstract presented at ECCO 2008, Lyon, France., S.B. Hanauer, B.G. Feagan, G.R. Lichtenstein, et al, Maintenance infliximab for Crohn's disease: the ACCENT I randomised trial. Lancet 2002;359:1541-1549.], suggesting there is a need to improve physician-patient communication about QOL and new treatment options that may help. To address this need, a multidisciplinary European group initiated by EFCCA (including an IBD consultant, nurse specialist, an IBD patient and two IBD EFCCA representatives/carers) set out to describe the key aspects of an 'ideal' IBD consultation and main considerations when talking about the impact of IBD on patients' daily lives. These insights can serve as a framework for developing practical tools to help facilitate IBD patient-physician communication.

Contribution of specialist nurses in managing patients with IBD.

Inflammatory bowel disease (IBD) is a collective term for the medical conditions ulcerative colitis and Crohn's disease. Both are chronic relapsing remitting diseases with a major impact on a patient's quality of life. Symptoms of the diseases include increased bowel frequency, abdominal pain, rectal bleeding, urgency and incontinence, weight loss and reduced appetite. There is no known medical cure for either condition, and surgery often involves stoma formation and, therefore, has major implications for the patient in terms of management and body image.

Infliximab use in Crohn's disease: impact on health care resources in the UK.

OBJECTIVE: To quantify the impact of infliximab therapy on health care resource utilization in the UK. METHODS: A retrospective audit was undertaken at seven centres in the UK, which reviewed patient notes for a period of 6 months before and 6 months after an initial infliximab infusion. Details of hospital admissions, outpatient visits, operations, diagnostic procedures, drug usage, and overall efficacy were collected. Results were compared for the two 6 month study periods. RESULTS: A total of 205 patients (62% female, median age 33 years) with moderate/severe Crohn's disease were audited. The majority of patients had chronic active disease (62%) and most received one infusion initially (72%). Clinicians rated 74% of responses as good to excellent and patients 72%. Most patients had concomitant immunosuppression (pre: 75%, post: 75%). Approximately half of the patients (45%) stopped taking steroids, with a further 34% having a dosage reduction. A fall of 1093 inpatient days was seen (1435 vs. 342) in the 6 months following infliximab administration. There were seven fewer operations, 33 fewer examinations under anaesthetic, and 99 fewer diagnostic procedures. Outpatient visits were similar pre- versus post- (555 vs. 534). The total reduction in direct costs amounted to an estimated pounds 591,006. Three hundred and fifty-three infliximab infusions were administered at an estimated cost of pounds 562,719. Thus, there was a net reduction of pounds 28,287 or pounds 137.98 per patient. CONCLUSIONS: Infliximab appears to be a potentially cost effective treatment for selected patients based on the reduced number of inpatient stays, examinations under anaesthetic, and diagnostic procedures over a 6 month period.