Inflammatory Bowel Disease Nurses Research Articles

Rare and severe adverse events in children with inflammatory bowel disease: analysis of data from the PIBD-SETQuality Safety Registry

Rare and severe adverse events can occur in children with inflammatory bowel disease (IBD), and the relationship with disease or drug treatment is often uncertain. We aimed to establish a method of reporting adverse events of interest in children with IBD, allowing for estimates of incidence rates with comparison between different regions, and, if possible, to compare with published data on rates of adverse events in children overall. For this analysis, we used data from the Paediatric Inflammatory Bowel Disease Network for Safety, Efficacy and Treatment and Quality improvement of care (PIBD-SETQuality) Safety Registry, which collects data on multiple rare and severe adverse events in children younger than 19 years with IBD. Overall, the registry collected data on ten prespecified rare and severe adverse events in children with IBD, as established by a panel of paediatric IBD experts, via reports from paediatric gastroenterologists at participating hospitals between Nov 1, 2016, and March 31, 2023. Reporting physicians, who could only be paediatric gastroenterologists or IBD nurses reporting on behalf of paediatric gastroenterologists, were recruited through invitations sent to both national and international IBD networks and at conferences. Once per month, participating paediatric gastroenterologists received an email with an anonymous and unique link to an online survey asking them to report whether any of ten rare and severe adverse events had occurred in a patient in their paediatric-IBD population in the previous month. Prevalent or retrospective rare and severe adverse events were excluded, as were events occurring in children with an unconfirmed diagnosis of IBD or for whom inflammatory colitis was part of a monogenic immunodeficiency disorder. Duplicates and events that did not meet the definitions and criteria were excluded. Physicians could also report other, non-categorised adverse events if they considered them rare and severe. In case of no response, up to two reminders were sent for each per-month survey. Annual denominator data surveys were sent to obtain the total number of person-years for the estimation of incidence rates, which were calculated via Poisson regression models. Responses were gathered from 220 paediatric gastroenterologists from 167 centres. 121 centres were in Europe, 23 centres were in North America, 17 centres were in Asia, and six centres were in Oceania. Combined, the total population with paediatric IBD consisted of an estimated 30 193 children with 114 528 person-years of follow-up. 451 adverse events were initially reported. After excluding and reorganising adverse events, 402 were eligible; 261 (65%) were categorised and 141 (35%) were non-categorised. The most frequently reported adverse events were venous-thromboembolic events (n=66), renal failure (n=43), opportunistic infections (n=42), and cancer (n=33). Haemophagocytic lymphohistiocytosis (n=4) and liver failure (n=3) were the least frequently reported adverse events. Incidence rates per 10 000 person-years were 5·50 (95% CI 4·25-6·97) for venous-thromboembolic events, 3·75 (2·74-4·99) for renal failure, 3·67 (2·67-4·89) for opportunistic infection, and 2·88 (2·01-3·98) for cancer. Of 66 venous-thromboembolic events, 31 (47%) involved cerebral venous sinus thrombosis at an incidence rate of 2·71 (95% CI 1·86-3·77). The PIBD-SETQuality Safety Registry enabled us to identify incidence rates of rare and severe adverse events in children with IBD. Our findings can guide physicians and enhance awareness of the incidence of adverse events in children with IBD that are considered to be rare. EU Horizon 2020 Research and Innovation Programme.

Inflammatory bowel disease (IBD) patients with impaired quality of life on biologic therapy benefit from the support of an IBD nurse specialist: Results of a randomised controlled trial in Germany (IBDBIO-ASSIST study).

IBDBIO-ASSIST was a randomised controlled trial assessing the efficacy of care provided by IBD nurse specialists in Germany in improving health-related quality of life (QoL) in IBD patients on biologic therapy. To evaluate patient-related outcomes and economic consequences associated with integrating IBD nurses into usual care. We randomly assigned 1086 patients with IBD on biologic therapy to a control group (CG) receiving usual care or an intervention group (IG) receiving additional care from an IBD nurse specialist. The primary outcome was disease-specific QoL (sIBDQ) assessed at 6, 12 and 18 months. At baseline, patients in both groups were highly satisfied with their treatment situation and had relatively high sIBDQ values (range: 1-7; CG: 5.12; IG: 4.92). In the intention-to-treat (ITT) analysis of the overall sample, there was no significant difference in sIBDQ between groups at the assessment time points. However, a per-protocol analysis of patients with impaired QoL at baseline (EQ-VAS < 75 [median]), showed improvement in sIBDQ over 6 months that became significant at month 12 and remained significant through month 18 (baseline: IG 4.24; CG 4.31; 18 months: IG 5.02; CG 4.76; p = 0.017). High baseline satisfaction of IBD patients with treatment and the relatively high baseline sIBDQ values may have contributed to the lack of significant difference in sIBDQ scores for the overall sample. However, patients with impaired QoL derived significant benefit from additional care provided by an IBD nurse specialist, leading to meaningful improvements in sIBDQ over the long term.

A256 NAVIGATING IBD CARE : HEALTHCARE PROVIDERS’ INSIGHTS ON IMPLEMENTATION OF NURSE NAVIGATOR-LED IBD FLARE PATHWAY

Abstract Background Disparities in access to healthcare for persons living with inflammatory bowel disease (IBD) persist. An IBD nurse navigational role promises to improve access to evidence-based specialist care by minimizing inequities in access to care. Little is known about how to implement a provincial nurse navigational role in the Canadian health system. Aims This study aims to explore healthcare providers' perceptions of barriers and facilitators to the implementation of an evidence-based IBD flare pathway through a provincial nurse navigational role. Methods This was a national qualitative study performed in collaboration with the CCC PACE Program, in which two virtual semi-structured group interviews were conducted in 2022. One group interview was with six IBD nurses from three provinces, and the second was with five gastroenterologists from five provinces. Participants were purposefully recruited. The Consolidated Framework for Implementation Research (CFIR) and the Capability, Opportunity, Motivation, and Behaviour (COM-B) frameworks informed the interview script development. Data were transcribed verbatim and subjected to content analysis, with major themes categorized into the COM-B domains. The results of preliminary data analysis are presented. Results While IBD nurses emphasized the critical role of effective communication tools, standardized referral systems, strong administrative support and patient education and engagement as facilitators, they also highlighted challenges like patient resistance, variability of training and the necessity for tailored patient care. Other barriers identified were the medical complexity of managing overlapping conditions, remote vs in-person considerations and the perception and definition of a flare. On the other hand, IBD-focused gastroenterologists emphasized the potential of integrating pathways into electronic medical records and the value of empowering nurse navigators. However, they pointed out concerns regarding the inherent variability in disease presentation, entrenched medical beliefs, comfort levels with nurse-led pathways and the inherent diversity in medical practices. Both groups identified resource constraints as a barrier and an effective triage process as a facilitator. Conclusions This study sheds light on the multifaceted perceptions of healthcare providers concerning the implementation of an evidence-based IBD flare pathway through a provincial nurse navigational role. These insights underline the complexity of implementing a nurse navigational role and the need for targeted interventions and resources to address the identified barriers while leveraging the facilitators. Funding Agencies CCC

Implementation of 'IBD-Specific Cognitive Behavioural Therapy' for Patients with Inflammatory Bowel Diseases with Poor Mental Quality of Life, Anxiety and Depression.

This paper describes the implementation of inflammatory bowel disease (IBD)-specific cognitive behavioural therapy (CBT) for IBD patients with poor quality of life (QoL), anxiety and depression, in four hospitals in the Netherlands. Treatment outcomes were compared with those of a previously published randomized control trial (RCT) of 'IBD-specific CBT', following a benchmark strategy. Primary outcome was IBD-specific QoL (IBDQ) completed before and after CBT, secondary outcomes were anxiety and depressive symptoms (HADS, CES-D). Semi-structured interviews were conducted among a pilot of gastroenterologists, nurse specialists and psychologists to evaluate 'IBD-specific CBT'. 94 patients started treatment (280 screened). At follow-up, 63 participants (67% compared to 81% in the RCT benchmark) completed the IBDQ. Treatment effect sizes of the implementation study were comparable and slightly larger than those of RCT benchmark. Gastroenterologists, IBD nurses and psychologists found CBT necessary for IBD patients with poor QoL, depression and/or anxiety disorders. 'IBD-specific CBT' can be successfully implemented. Regular supervision of psychologists performing 'IBD-specific CBT' treatment is needed.

N35 Inflammatory Bowel Disease (IBD) nurses' knowledge practice and attitudes related to Microscopic Colitis (MC)

Abstract Background Microscopic Colitis (MC) is affiliated with and increasingly recognized as an Inflammatory Bowel Disease (IBD). Crohn's Disease and Ulcerative Colitis (IBD) were first described over a century ago. Microscopic Colitis was first described in 1976 and the last decade has seen increasing awareness and European guidelines developed. There is no education on microscopic colitis for IBD nurses and it is not known of the practice of MC by IBD nurses in Ireland. Furthermore it is not incorporated in the Nurse European Crohn's and Colitis Organisation (N-ECCO) guidelines. The aim was to assess knowledge, practice and attitudes of IBD nurses in relation to MC. Methods A quantitative cross sectional survey research methodology was conducted using a 17 point questionnaire. 29 (n=29) IBD nurses from the IBD national association of Ireland (IBDNAI) responded from a total of 52 (55.7%). The inclusion criteria was 1) registered practicing nurse 2) on IBDNAI register 3) willing to participate. Data was recorded and analysed using SPSS software. Descriptive statistics were implemented. Cronbach's Alpha for instrument reliability was 0.789. Results The majority were female (90%) between ages 36-55 years (86%). The greater number (41%) had over 11 years of experience, followed by 38% with 1-5 years experience. The highest work location was Clinical Nurse Specialist 65.5% (n=19) and the majority qualified at Post Grad level (27.6%, n=8) or Masters level (34.5%, n=10). Mean and standard deviation scores for knowledge indicated no significant variation but variation was most significant with treatments for MC. Knowledge and years of experience revealed no significant variation. Less than one year experience (Mean 1.50 SD.707) and greater than 11 years (Mean 1.42 SD.669) Knowledge scores for symptoms are high (65.5%-90%) but investigations and treatments are average (31%, 38% and 48.3%). In relation to practice the majority of IBD nurses 71% do not receive referrals and 78.5% do not review patients diagnosed with MC at the out-patient department. Attitudes from IBD nurses regarding MC as part of the IBD nurse caseload, 42.8% said no and 57.10% said yes. 67% agreed that MC should be incorporated into the N-ECCO guidelines. Conclusion Education on Microscopic Colitis for IBD nurses is required nationally in Ireland which will improve the integration into practice. IBD nurses are best placed to care for patients diagnosed with MC. Recognition for MC to be incorporated into the Nurse European Crohn's and Colitis (N-ECCO) guidelines needs to be considered.

N42 New tool for IBD nurses to support IBD patients

Abstract Background There are about 58000 Inflammatory Bowel Disease (IBD) patients in Finland. The number has doubled in ten years. Over 5500 IBD patients live in the Pirkanmaa region. Patients are treated in three different hospitals and there are eight trained IBD nurses in adult services. Patients can contact a call back-system at any hour of the day. With growing number of patient contacts there is a need for additional contact channels and ways of support for patients care. Methods TaysPolku is an app developed by Buddy HealthCare where IBD patients can see their appointments, upcoming procedures, information packages, medication instructions, videos and questionnaires related to their treatment all in one place. TaysPolku provides automatic reminders and enables them to contact their own care unit directly via message. IBD nurses has been part of creating material for TaysPolku. IBD nurse explains the app and creates TaysPolku for the patient after providing the necessary information. The app is downloaded from app stores, verified by strong authentication. The app works with any face ID or pin number chosen by the patient. Results TaysPolku was introduced in June 2021 and the first users were patients receiving intravenous biologicals. IBD nurses informed about the new service during the infusion visits and provided written material. In the next phase, TaysPolku was set up for biological self-injecting patients. Currently, TaysPolku have been created 299 patients at Tampere University Hospital Tays. The utilization rate of the created TaysPolku is high. Messages on TaysPolku has been send/received 3896 times. The messages feature enables the care unit to reach everyone using TaysPolku simultaneously. It is used in all three hospitals and every IBD nurses take care of it. Satisfaction with TaysPolku has been good for both patients and IBD nurses. Patient questionnaire highlighted the benefits, and the answers highlighted the ease of use of the service. "A well-functioning system " "Reminds me very much of the lab, questions and treatment days. Easy to useand connect. There could also be a connection to other departments when care is taken in other departments as well" Conclusion Different forms of service are needed with the growing number of patients, and a digital app that supports the patient's self-care has been proven to work. Further development is underway to offer a similar service to all IBD patients in the region.

N44 Implementing Electronic Documentation of a Nurse-Led IBD Advice Line

Abstract Background Beaumont Hospital is a tertiary referral centre providing care to over 4500 patients with inflammatory bowel disease (IBD). This service offers an IBD nurse telephone advice line per international IBD standards. This was established to allow patients on-demand access to our service, improving the overall quality of care. Aims/Background • Time-to-response is recorded for all calls • Calls and emails are audited every month to ensure • Local KPIs are met • Identify potential weakness in service (i.e. access to emergency clinic spots) • Ensure continued improvement and service evolution • Track appropriate use of service by patients Methods Data was collected by establishing an Excel spreadsheet due to a lack of infrastructure to support a database. The spreadsheet will document the date of the call, date of the return call, patient name, hospital identification number, consultant name, reason for calling, and intervention time spent with each patient. Based on the initial audit of findings, the Patient Satisfaction Survey was distributed (n=110) and recorded. Patient feedback to identify areas for education and service development Results Two thousand six hundred and thirty-three (2,633) calls were received from January 2022 to September 2022. Auditing is performed monthly, identifying areas requiring improvement. Patients are frequently re-educated on how to best engage with our service. Pathways have been established to divert the calls to the appropriate alternative services such as administrators, endoscopy department, infusion services, and GP services, freeing our service for the appropriate calls only—30% of calls related to IBD flares. IBD nurses directly managed 82% of patients with flares. Overall, 75% of calls were managed virtually by an IBD nurse. An online patient satisfaction survey showed that 98% of patients expressed excellent satisfaction with the advice line service. Conclusion The precise documentation guided the established lean pathways for prescription renewal and pathways to redirect patients to endoscopy and non-IBD queries. The study results in aids to establishing protocols to limit prescriptions for patients who are non-compliant with blood/visits. It developed written and verbal information for patients on parameters for appropriate service use—education of patients: Modified written and oral patient education. The results of an online patient satisfaction survey showed 98% of patients report satisfaction with “excellent. The precise documentation and measurement of all the calls received facilitates service improvements and locally appropriate patient care. Patient involvement in improvement projects allows improvements to develop with patients at the centre.

P1030 Inflammatory Bowel Disease helpline contact trends in a real-world Australasian cohort: Crohn’s Colitis Cure (CCC) data insight’s program

Abstract Background For optimal outcomes, Inflammatory Bowel Disease (IBD) necessitates lifelong engagement in care. Specialized-IBD-nurse-led helplines improve access to care and reduce associated costs1,2. Despite this evidence, IBD nurses and helplines receive variable funding and little is known about their use across care sites. We therefore analysed IBD-helpline usage in a large, multi-site real-world Australasian cohort. Methods Crohn’s Colitis Care (CCCare), is a cloud-based IBD-specific electronic medical record used in Australia and New Zealand. It includes a "Helpline" tab to support helpline encounter documentation during the point of contact. All entered data feed into an associated, de-identified clinical quality registry (CQR). Helpline-associated data fields, including contact reason and type, were extracted from CCCare’s CQR in November 2023. Data from 6 large adult care sites across Australia and New Zealand were analysed. Results In 2022, a total of 6,717 helpline encounters were documented. There was a roughly equal split in contact type; phone accounting for 50.9% (n=3,416) and email for 49.1% (n=3301). The most common reasons for contact were related to medications (n=2,577; 38.4%), investigations (n=1,719; 25.6%) and clinical (n=1,060; 15.8%). More encounters were seen in 2023 (to date of data extract), with 7,540 helpline entries to date (Figure 1). In 2023, the most common form of patient contact was email (70.3%), with phone contact accounting for only (29.8%). The most common reasons for contact were again related to medications (n=2,577; 31.1%), investigations (n=1,162; 22.0%) and clinical (n=1,439; 19.1%). In both years, helpline activity was lowest in January and February, perhaps corresponding to the Holiday season (southern hemisphere summer). Conclusion A number of helpline entries were recorded across these 2 years, with activity lowest each summer. The data show a shift in the predominant mode of contact from phone to email in 2023, reflecting evolving communication preferences and making scheduling of helpline support easier. 1 - Nicolaides S, Vasudevan A, Van Langenberg D. Inflammatory Bowel Disease Helpline Reduces Subsequent Inpatient Admission Rates. J Crohns Colitis. 2020 Feb 10;14(2):281. doi: 10.1093/ecco-jcc/jjz141. PMID: 31374121. 2 - Karimi N, Sechi AJ, Harb M, Sawyer E, Williams AJ, Ng W, Connor SJ. The effect of a nurse-led advice line and virtual clinic on inflammatory bowel disease service delivery: an Australian study. Eur J Gastroenterol Hepatol. 2021 Dec 1;33(1S Suppl 1):e771-e776. doi: 10.1097/MEG.0000000000002249. PMID: 34402467.

STRUCTURAL EVALUATION OF INFLAMMATORY BOWEL DISEASE COMPREHENSIVE CARE UNITS IN BRAZIL.

The most efficient way to prevent complications from inflammatory bowel disease (IBD) is to provide patients with optimized care. Nonetheless, in Brazil, there is no validated methodology for evaluating health services recognized as comprehensive care units (CCU), making it difficult to assess the quality of care provided. To understand the current scenario, map the distribution of centers and identify strengths and weaknesses, considering local and regional characteristics. The study was carried out in three phases. Initially, the Brazilian Organization for Crohn's disease and colitis (GEDIIB) developed 22 questions to characterize CCU in Brazil. In the second phase, all GEDIIB members were invited to respond to the survey with the 11 questions considered most relevant. In the last phase, an interim analysis of the results was performed, using the IBM SPSS Statistics v 29.0.1.0 software. Descriptive statistics were used to characterize the center's profile. The chi-square test was used to compare categorical variables. There were 53 responses from public centers (11 excluded). Most centers were concentrated in the Southeastern (n=22/52.4%) and only 1 (2.4%) in the Northern region of Brazil. Thirty-nine centers (92.9%) perform endoscopic procedures, but only 9 (21.4%) have access to enteroscopy and/or small bowel capsule endoscopy. Thirty-three centers (78.6%) offer infusion therapy locally, 26 (61.9%) maintain IBD patient records, 13 (31.0%) reported having an IBD nurse, 34 (81.0%) have specific evidence-based protocols and only 7 (16.7%) have a patient satisfaction methodology. In the private scenario there were 56 responses (10 excluded). There is also a concentration in the Southeastern and Southern regions. Thirty-nine centers (84.8%) have access to endoscopic procedures and 19 perform enteroscopy and/or small bowel capsule endoscopy, more than what is observed in the public environment. Infusion therapy is available in 24 centers (52.2%). Thirty-nine centers (84.8%) maintain a specific IBD patient database, 17 (37%) have an IBD nurse, 36 (78.3%) have specific evidence-based protocols, and 22 (47. 8%) apply a patient satisfaction methodology. IBD CCU in Brazil were mainly located in the Southeastern and Southern regions of the country. Most centers have dedicated multidisciplinary teams and IBD specialists. There is still a current need to improve the proportion of IBD nurses in IBD care in Brazil. •In Brazil, there is no validated methodology for evaluating health services recognized as comprehensive care units (CCU), making it difficult to assess the quality of care provided. •Most CCU were concentrated in the Southeast region and only one (2.4%) in the Northeast region of Brazil. This pattern follows the epidemiological trends of IBD in the country. •There is still difficulty in accessing enteroscopy and/or small bowel capsule endoscopy in the public health system. •Most centers have dedicated multidisciplinary teams and IBD specialist doctors. •There is still a current need to improve the proportion of nurses treating IBD in Brazil.

Healthcare professionals’ priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique

ObjectivesYoung people with a stoma due to inflammatory bowel disease (IBD) commonly experience distress; however, this is not always well managed in clinical settings. More effective support may/is likely to...

Results of a national survey of IBD nurses reported barriers and facilitators towards providing care to patients with microscopic colitis

Objective The authors developed a survey to understand the barriers and facilitators that might be present in providing care for patients with microscopic colitis (MC) in existing inflammatory bowel disease (IBD) nurse-led services. Methods A survey was developed using Google Forms to collect anonymous responses from IBD nurses across all four nations of the UK. Twitter and the IBD Royal College of Nurses IBD network Facebook page and email group were used to disseminate the survey. Analyses were carried out using descriptive statistics. Results Of the n=102, responses received showed that 89.2% (n=91) consider MC when they see patients with watery diarrhoea. No training had been received about MC by 58.8% (n=60) of the n=102, while 52% (n=53) of the same cohort felt they had enough knowledge/confidence to manage a patient diagnosed with microscopic colitis. Conclusions The survey results also indicate an interest among the IBD nursing community in MC and a desire to learn more about MC to support patients living with this condition.

PROFILE OF INFLAMMATORY BOWEL DISEASE NURSES IN BRAZIL.

•An identification of the profile of inflammatory bowel disease nurses in Brazil was peformed, and only four nurses worked exclusively with patients with inflammatory bowel disease. •The main areas of activity were outpatient clinics and ostomy care. •Nursing care was based on the nursing process, and the main topics approached in these appointments were treatment adherence and ostomy. •Nurses showed knowledge on immunosuppressive medications and biological therapy. Background - Nurses play a fundamental role within the inflammatory bowel disease (IBD) multidisciplinary team. Objective - To identify the profile of IBD nurses in Brazil and their work process organization and characterize the health services where they work. Methods - A questionnaire-based research was developed. The inclusion criteria were nurses with experience in IBD care, nurses with scientific research published in an indexed journal or in process, nurses with master's or doctorate degrees concluded or in progress, and educator nurses with expertise in IBD.Results - Seventy-four nurses were included, among whom 66 (89.19%) were women; their mean age was 40.63±9.98 years. Sixty-six percent work in the Southeast region, and more than half (54.05%) had a specialization course. Only four (5.41%) nurses worked exclusively with patients with IBD. The main areas of activity were outpatient clinics (39%) and ostomy care (35%). Nursing care was based on the nursing process (51.35%), and the main topics approached in nursing appointment were treatment adherence (72.97%), and ostomy (68.92%). Forty-seven (63.51%) nurses had knowledge on immunosuppressive medications and 52 (70.27%) on biological therapy. Most health services were integrated with a hospital that has clinical (72.97%) and surgical hospitalization units (67.57%), and 46 (62.16%) of them had an infusion center. Conclusion - Describing the work process of IBD nurses can supplement their organization of the IBD assistance process, as they do not follow any specific consensus. In addition, the characteristics necessary for IBD care are not found in all health services.

Outcomes of a Comprehensive Specialist Inflammatory Bowel Disease Nursing Service.

Inflammatory bowel disease (IBD) is best managed by a multidisciplinary team within a dedicated IBD service. IBD nurses play an important role within this team. We aimed to evaluate the contribution of our comprehensive outpatient IBD nursing service on patient outcomes, quality of care, and healthcare costs. We performed a retrospective review of all IBD nurse encounters with patients over a 12-month period from October 2020 to September 2021 at a tertiary IBD referral center. Each nurse encounter was classified with respect to its clinical context, activities, and outcomes. Descriptive statistics were used to characterize these encounters and an economic analysis was performed to estimate the cost savings to the hospital. A total of 2537 nurse encounters occurred with 682 patients; 41% of encounters were nurse-initiated contacts with patients and 34% were patient-initiated contacts with the nurse helpline (26% via email, 8% via telephone). Most encounters involved clinical assessments (66%), providing education, counseling or updates (47%), and reviewing investigation results (38%). A gastroenterologist was consulted for advice in 35% of contacts. An estimated 29 emergency department visits, 1925 outpatient clinic visits, and 137 general practitioner visits were avoided. After deducting costs incurred, a net estimated annual saving of up to AUD $570 838 was achieved. Nurses commonly facilitated faster access to investigations (29%), education provision (28%), delivery of biologic services (25%), and medication changes (19%). A comprehensive IBD nursing service is associated with improved patient outcomes and quality of care, and reduced healthcare costs. This study supports the expanding role of IBD nurses in a modern multidisciplinary IBD service and the need for greater funding and integration of IBD nurses into IBD services.

A188 INFORMING IMMUNOCOMPROMISED POPULATIONS: AN EFFECTIVE AND EFFICIENT COVID-19 KNOWLEDGE TRANSLATION STRATEGY

Abstract Background Throughout the COVID-19 pandemic, one of the major challenges was conveying expert health information, which was evolving rapidly, to confer population-level advice; this was especially relevant to at risk groups, such as those who are immunocompromised due to conditions like inflammatory bowel disease (IBD) or medications to manage disease. Purpose To provide sufficient information to those with IBD (&amp;gt;0.75% of the Canadian population or roughly 300,000 individuals) and their carers to allow self assessment of personal risks related to COVID-19. Method On March 17, 2020, Crohn’s and Colitis Canada (CCC) convened the COVID-19 &amp; IBD Taskforce comprised of adult and pediatric gastroenterologists, IBD nurses, infectious disease experts, scientists, public health officials, communication and government relations experts, and patient advisors. The taskforce met weekly (later monthly) to synthesize rapidly evolving information on COVID-19 and personal risk assessment. Expert reviews of population-level recommendations were tailored to the IBD community and communicated through website FAQs and infographics; a public-oriented burden report with foci on additional special populations (e.g., pregnant people, pediatrics, seniors), IBD medications, and mental health and access to care during the pandemic; and through a moderated, online webinar series. The 1- to 2-hour webinar recordings were then curated into 3- to 5-minute video clips to answer specific questions and uploaded to CCC’s YouTube page. YouTube and website metrics show the continued efficacy of this strategy. Result(s) More than 24,778 households registered for the first 23 webinars, with more than one third registering for more than one webinar. As of April 1, 2021 (just after the 23rd webinar), there have been 54,136 views of the archived full (1- to 2-hour) webinars and a further 78,862 views of individual webinar segments (3- to 5-minute curated clips), for a total of 126,187 views. Additionally, traffic to the CCC website increased exponentially with 484,755 unique views to the COVID-19 web pages, viewed for up to 28.29 minutes. Since April 2021, after an additional seven webinars, these numbers have continued to swell to 33,243 (registrants), 81,370 (webinar views), 92,862 (segment views), and 810,156 (unique website views); this is demonstrative of the continued impact of the electronic knowledge translation strategy. Image Conclusion(s) While many within the IBD community were secluded during the early portions of the pandemic due to lockdown restrictions and public health advice not tailored to immunocompromised individuals, advice tailored to this community and presented through electronic methods proved to be an effective and efficient knowledge translation strategy. Please acknowledge all funding agencies by checking the applicable boxes below CCC Disclosure of Interest None Declared

N05 Highlighting the critical contributions of Inflammatory Bowel Disease nurses in Canada: Perspectives from nurses, gastroenterologists, individuals living with IBD, and caregivers.

Abstract Background Multidisciplinary teams are essential in managing Inflammatory Bowel Disease (IBD). IBD nurses play a critical role in improving patient outcomes and providing cost-effective quality of care. In Canada, access to IBD nurses remain inconsistent. There are more than 270,000 people living with IBD in Canada and fewer than 90 IBD nurses to care for them. This study was conducted to capture the value of IBD nurses, to identify gaps in resources, and to generate strategies for building IBD nurse capacity and enhancing the contributions of IBD nurses in Canada. Methods A convergent mixed-methods design was utilized to gather input from 4 stakeholder groups: IBD nurses, gastroenterologists, individuals living with IBD, and caregivers. Data collection was done through completing a review of the literature, stakeholder surveys, and one-on-one online semi-structured interviews with all stakeholders. Descriptive statistics were used for the quantitative analysis. Semi-structured interviews were audio recorded and transcribed verbatim then thematically analyzed. Results The IBD nurse’s role in clinical care was recognized as a value-add across all stakeholder groups. Having access to a specialized IBD nurse was recognized as a service that elevates the quality and continuity of patient care. As the interface between patients and other healthcare providers, there was recognition amongst stakeholders that IBD nurses are ideally positioned to educate patients about IBD management, general health promotion in the context of chronic disease and may support other aspects of care such as psychosocial, nutrition, and other extraintestinal manifestations or to help guide patients toward appropriate care channels. Many IBD nurses view advocacy as a logical extension of their official responsibilities, helping IBD patients to make treatment decisions and assisting them with disease challenges that affect their quality of life. Conclusion IBD nurses represent an underused resource in Canadian IBD care. Canada currently falls short of the recommended 2.5 full-time IBD nurse equivalents per 250,000 population. Achieving this objective will require a commitment to train IBD nurses and additional funding for their education and employment. The government can work with nursing institutions to set benchmarks, establish training programs, and create opportunities for IBD nurses in Canada. Introducing more IBD nurses into the system and using them to their full capacity makes sense from both a clinical and economic standpoint. It lifts the burden on gastroenterologists and primary care physicians, reduces costs to health systems while improving the overall quality of care for IBD patients.

N17 Azathioprine - Is it really a dirty drug? IBD nurse's experience at Our Lady of Lourdes Hospital

Abstract Background Azathioprine is commonly used in the treatment of inflammatory bowel disease (IBD) either as monotherapy or in combination with anti-TNF agents. Azathioprine has numerous side-effects (SA) including leukopenia, pancreatitis and drug-induced liver injury (DILI). At our centre, dedicated IBD nurses play a central role in educating patients regarding potential SA and the importance of blood test monitoring. Suboptimal compliance with regard to blood test monitoring is a significant issue, particularly given that some SE are likely to be asymptomatic, and only apparent on blood tests; eg. neutropenia, leukopenia, DILI. Our aim was to capture real world data regarding the true burden of SE experienced by IBD patients taking azathioprine. Methods We conducted a single-centre study within a dedicated gastroenterology unit served by two full-time dedicated specialist IBD nurses. Our unit serves over 1000 IBD patients. Currently approximately 22% of our patient cohort are taking azathiopriine. A prospectively maintained excel database was initiated in 2014 by the IBD nurses in order to capture data regarding SE experienced by IBD patients taking azathioprine. Data was recorded by the IBD nurses each time a patient experienced a SE secondary to azathioprine. The nature of the SE was recorded. Of note, checking of TPMT levels prior to initiation of azathioprine is standard practice in our centre. Results During the eight year study period (2014-2022), 91 patients were recorded as having experienced SE to azathioprine. The most common SE (n=43%) was a general intolerance to the drug which included short periods of nausea or flu-like symptoms; followed by muscle/joint pain (n=17%); pancreatitis (n=14%); abnormal lfts (n=12%); hair loss (n=10%); low wcc (n=4%). Conclusion Our prospectively collected real-world data shows that SE from azathioprine are common amongst IBD patients. This emphasises the importance of patient counselling prior to initiation of this drug. Whilst leukopenia is a particular concern amongst IBD services who prescribe azathioprine, our data show that this accounts for a very small percentage of SE that our patients experience while taking azathioprine.

P340 Issues on implementing treat-to-target approach in Asia Pacific, Middle East and Africa: Reality, gaps, and way forward -APMA IBD Coalition

Abstract Background To understand the real-world issues and difficulties in implementing treat-to-target (T2T) approach in managing inflammatory bowel disease (IBD) patients in the Asia Pacific, Middle East and Africa (APMA) region. Methods A structured survey of 10 questions was sent to 19 IBD specialists from 14 economies/countries in the APMA region between June and August 2022, followed by three hybrid roundtable discussions to identify, elaborate and validate the gaps and challenges in T2T adoption in their healthcare setting. The survey used a series of questions exploring experts’ current practice and preference of treatment endpoints, diagnostic and monitoring tools, and major desirable improvement if resources are not constrained. Results The two major gaps expressed by of IBD specialists in the APMA region are to early diagnose and treat IBD patients (61.1%), and the lack of trained IBD nurses (50%) (Figure 1.The major gaps in the diagnosis and monitoring of IBD in routine clinical practice in APMA). While T2T approach is widely accepted among IBD specialists across the APMA region, blood tests (such as CRP, ESR) and faecal calprotectin (FC) test are two commonly used modalities by 77.8% and 72,2% IBD specialists, respectively However, the availability and cost of FC test is the second leading challenge (55.6%) faced by these specialists, with patient compliance being the most challenging (66.7%)(Figure 2.The biggest challenges in monitoring IBD patients in APMA). As to the most desired IBD monitoring tool, 88.9% considered the application of validated and reproducible intestinal ultrasound (Figure 3.Most desired IBD monitoring tool in APMA if resources are not a problem). The availability of trained IBD nurse (39%) and increasing awareness and training of general practitioner (33%) are the two most important factors that IBD specialists considered to improve care of IBD patients in the region (Figure 4.Major improvements required in diagnosis to improve IBD patient care in APMA). Conclusion Considerable gaps in implementing T2T approach to managing IBD patients in the APMA region are identified via this survey by IBD specialists. Lack of training of general practitioners, IBD nurses and availability of affordable FC are common issues identified in this region, which would deserve implementation of new educational initiatives and resources reallocation.

P539 Patient Preferences for Inflammatory Bowel Disease Treatments: Development of a European Preference Survey using a Discrete Choice Experiment

Abstract Background There is a growing consensus across stakeholders on the value of patient preference (PP) studies, as recognized by the European Medicines Agency and the European Network for Health Technology Assessment. This study aimed to develop a PP survey to quantitatively evaluate which characteristics are most important to inflammatory bowel disease (IBD) patients, so that the results can inform the medicinal product life cycle (MPLC). Methods Following the PREFER recommendations, a four-step approach was followed to develop the PP survey: 1) stated preference method selection, 2) attribute and level development, 3) survey implementation, and 4) survey piloting. Throughout the different steps of the survey development, an advisory board (AB) consisting out of patients, patient organizations, gastroenterologists, IBD nurses, and statisticians were consulted. Results First, a discrete choice experiment (DCE) was chosen as the preferred elicitation method because it allows to reach the objectives of the survey, namely to: 1) quantify the relative importance of different attributes, 2) elicit the trade-offs patients make, and 3) measure preference heterogeneity. Second, a scoping literature review of IBD clinical trials, available IBD treatments, and previously published preference studies was performed. Discussions on these characteristics with patients (n=11) during focus group discussions (FGDs) using the nominal group technique revealed the following patient prioritized characteristics: prevent surgery, long-term clinical remission, improved quality of life, occurrence of urgency, and improved labor rate. Based upon the results of the FGDs, a preliminary list of possible attributes for inclusion in the DCE was refined during AB meetings. This list was iteratively adapted until consensus was found on 14 attributes, their levels, and corresponding explanations (Figure 1). Third, the DCE survey was designed to include these 14 attributes using partial profiles next to measures about sociodemographic variables, health literacy, and treatment experience. Fourth, piloting the study with IBD patients (n=4) revealed that the survey was comprehensible, had a good flow, and contained graphics that supported the content. Only minor text edits were needed. Conclusion It is key to develop a PP survey in partnership with patients and other members of the AB. This survey will be rolled out across Europe in 11 different languages and will increase understanding of which treatment aspects are most important to IBD patients. These aspects should be included in drug development and evaluation so that the MPLC can be more patient-centered and future treatments will target aspects that are most important to IBD patients themselves.

P670 “What Matters To You?” – How do patient views compare with a patient experience framework and UK national standards of care?

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.

N04 How to manage the concerns of patients with inflammatory bowel disease due to the transition from in-hospital to home management with oral or subcutaneous therapies: results of a survey of a cohort of patients in intravenous biologic treatment

Abstract Background Therapeutic armamentarium of inflammatory bowel disease (IBD) has expanded, including several intravenous (IV) and subcutaneously administered biological agents and orally administered small molecules (SMs). Additionally, some biologics initially available only for IV administration also have subcutaneous (SC) formulations. However, transitioning from in-hospital IV treatment to SC or oral home therapy can lead to some patient concerns, mainly linked to the need for self-administration and managing side effects. This study aimed to evaluate the opinion of IBD patients on the transition to oral or SC treatment, considering multiple socio-demographic factors, the frequency of biologic agent infusion, and the commitments (personal, family, work) associated with the in-hospital administration of therapy. In addition, patients were asked about their knowledge of new therapeutic options and their expectations about this management modality. Methods We conducted a survey using a questionnaire prepared by a team of gastroenterologists and nurses working at the IBD Unit of the CEMAD-Policlinico Gemelli of Rome. The survey was administered to consecutive IBD patients in stable IV biological treatment from January to October 2022. It consists of 31 items and has been divided into four sections: descriptive, commitment, knowledge and passage mode opinion. Results 311 patients responded to the survey from 400 questionnaires (77.7%). 49.8% favored switching from IV to oral or SC therapy, and only 25.1% disagreed. In univariate and multivariate analysis, the home therapy approval rate was significantly associated with the distance from the IBD center (Fig. 1) and work/family/personal commitments. Surprisingly, only about a quarter of the IBD patients knew that almost all the following available therapeutic agents will have an SC administration route or will be SMs (Fig. 2). Regarding patients' opinion on the efficacy of SMs or SC administration of biological agents compared to IV drugs: 63% had no definite idea, while 14% believed that the effectiveness could be reduced. 23.8% of patients would like to be reassured by their gastroenterologist or nurse on the efficacy and safety of these new therapeutic options, and 7.7% would like to know the scientific data from studies on this issue. Conclusion The transition from in-hospital to the home therapeutic management of biological therapy with SC or oral agents was generally viewed favorably by patients, especially if they have commitments or are residents far from the IBD center. However, to reduce patient concerns and encourage this change, it is necessary to implement a patient training and information program involving all the IBD unit care figures, including IBD nurses.