Inflammatory Bowel Disease Specialists Research Articles

P531 A retrospective audit of the inflammatory bowel disease specialist nurse-led telephone advice service

Abstract Background Inflammatory bowel disease affects more than 300 000 people in the UK. The aims of the audit were to review the current use of a telephone service provided by the IBD specialist nursing team in a DGH with a view to better funding and further development of the facility. Methods The letters generated from each phone call between January and February 2018 were collected and a sample assessed for outcomes directly related to the consultation. Outcomes were subtyped into a change in medical treatment, referral for investigation, referral to another specialist or arrangement of an urgent clinic appointment or hospital admission. Each phone consultation was also assessed as to whether it had avoided an attendance to the GP or hospital via A&E or acute medicine. Results The two-month period yielded 491 phone calls, of which 100 letters were reviewed of which 56 (56%) had ulcerative colitis (UC), 44 (44%) had Crohn’s disease (CD). Male users comprised 36% (vs. 64% females) and the age of callers ranged from 19 to 84 years (median age 44 years). Of the UC patients, 45 patients (80.4%) had been diagnosed over 2 years previously with two (3.6%) having been diagnosed within the preceding 3 months (CD patients 34 (77.3%) >2 years previously and three (6.8%) within the last 3 months). The phone consultations led to a change in medication in 49 cases (49%). Phlebotomy and/or faecal calprotectin testing was requested for 59 patients (59%) following the phone call and a further 17 (17%) were discussed with a consultant, although only 8 (8%) required an IBD nurse-led or gastroenterology consultant-led clinic (six and two patients, respectively). Nine patients (9%) went on to have cross-sectional imaging or ultrasound with contrast and 7 (7%) were referred for endoscopic assessment. The overall complexity of the consultation was assessed by the number of services referred to/requested. Thirty-four patients (34%) merely required reassurance or verbal advice whereas two cases (2%) led to five distinct referrals or investigation requests (one service 33 (33%), two service 20 (20%), three service 9 (9%), four service 3 (3%)). Each phone call was assessed as to whether it had likely avoided attendance elsewhere. This included general practice (25 cases (25%)), accident and emergency (2 (2%)), IBD nurse clinic appointment (41 (41%)) or consultant clinic appointment (6 (6%)). Conclusion (1) Our audit shows that the IBD nurse-led telephone service is extremely demanding, with a large volume of calls. (2) Remote management of patients could be facilitated by the telephone nurse-led hotline advice service leading to a reduction in healthcare costs, avoiding face-to-face consultations and managing patients as per their personalised needs.

Medication-Related Knowledge and Medication Adherence in Pediatric and Adolescent Patients with Inflammatory Bowel Disease.

BackgroundNon-adherence to oral maintenance therapy in adolescents with inflammatory bowel disease (IBD) is a significant healthcare problem. Knowledge of the prescribed medication can increase medication adherence. We aimed to investigate the relationship between medication adherence and disease-related knowledge of pediatric and adolescent patients with IBD.MethodsWe conducted a “pop quiz” to investigate the disease-related knowledge of pediatric patients with IBD who were followed-up at our institution and reviewed their medical records, including data on sex, diagnosis, age at diagnosis, and disease duration. Medication adherence was evaluated by the doctor in charge, and ≥ 80% of patients constituted the “good adherence group.”ResultsOf 93 patients, 59 (63.4%) were males, and 78 (83.9%) had Crohn's disease. The mean age at diagnosis was 13.8 ± 2.8 years; mean follow-up duration, 4.8 ± 3.4 years; and mean patient age, 18.6 ± 3.7 years. Only 65 patients (69.9%) knew the exact name of the medication they were currently taking, and 34 (36.6%) knew the correct dose. Only 15 patients (16.1%) knew the name of the medications they were previously taking. A total of 64 patients (66.8%) showed an adherence rate of 80% for the weekly prescribed oral medication. The patients in the poor adherence group were significantly older than those in the good adherence group (P = 0.035). The number of hospitalizations per year was statistically higher in the good adherence group (P = 0.024). The proportion of patients who knew the names of the medications they were previously taking and were aware of the side effects of the medications was significantly higher in the good adherence group (P = 0.008 and P = 0.020, respectively).ConclusionAdolescent IBD patients have lower oral medication adherence. Knowledge of the prescribed medications taken previously, and the adverse effects of these medications are associated with good adherence. IBD specialists should educate the patients regarding the disease and about their medication.

Effect of distance to specialist care for the diagnosis and disease outcome of inflammatory bowel disease in the Swiss inflammatory bowel disease cohort study.

Background:Inflammatory bowel disease (IBD) needs early interventions and an individual specialist–patient relationship. Distance from a tertiary IBD center might affect patient’s disease course and outcome. We investigated whether the patient-to-specialist distance has an impact on the disease course using the well-defined patient collective of the Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS).Methods:Patient’s home address at diagnosis (postal zip code) was extracted from the SIBDCS database. Distance between each zip code and the nearest located IBD specialist center was calculated and classified into the following three sections based on proximity: <10 km (group 1); 10–35 km (group 2); >35 km (group 3).Results:Our study included in total 408 IBD patients [234 Crohn’s disease (CD), 154 ulcerative colitis (UC), 20 IBD unclassified (IBDU)]. Median age was lowest in group 2 at diagnosis (G1: 28 years; G2: 21 years, G3: 26 years, p < 0.01). The diagnostic delay did not differ between groups. CD patients in group 1 were treated more often with anti-tumor necrosis factor (TNF) agents (72% versus 56%, p = 0.04) and 5-aminosalicylates (44% versus 28%, p = 0.04) than in group 3. UC/IBDU patients in group 1 were treated more often with corticosteroids than patients in group 3 (83% versus 58%, p < 0.01). The occurrence of IBD-related surgeries did not differ between groups.Conclusions:Patient-to-specialist distance might affect drug treatment. However, disease course and the need for IBD-related surgery does not seem to be associated with a longer distance to specialist care in Switzerland.

P036 Socioeconomic Disparities in IBD: Outcomes in Emergency Department Utilization and Outpatient Follow-Up

BACKGROUND: The association of socioeconomic status, emergency department (ED) utilization, and access to outpatient gastroenterology care in inflammatory bowel disease (IBD) remains underexplored. We sought to identify associations between overall socioeconomic deprivation and these outcomes in IBD patients. METHODS: Our historical cohort included 743 unique IBD patients with a total of 6,036 all-cause ED visits during a 51-month period (January 1, 2015 to April 1, 2019). Detailed demographic variables were recorded for all subjects. Zip codes were used to approximate the level of socioeconomic deprivation via the Area Deprivation Index (ADI), a comprehensive score developed at the University of Wisconsin based on a composite score including 17 different factors related to income, education, employment, and housing quality (1). ADI scores of these IBD patients were divided into quartiles (quartile 4 = most deprived) and then compared with outcomes, including average number of ED visits, average hours spent in ED per visit, acuity level of ED visits (by Emergency Severity Index levels 1–5, with level 1 = highest acuity), admission rates, total outpatient GI visits and IBD-specialist visits, percent attending any outpatient GI visit or IBD specialist visit, and initiation of any outpatient steroid-sparing therapies. Univariate comparisons were performed using analysis of variance (ANOVA) for continuous variables and chi-square tests for categorical variables. Statistical significance was set at P < 0.05. RESULTS: 743 IBD patients (60% female, age 48 ± 18 yrs, 446 with Crohn's disease (CD), 297 with ulcerative colitis (UC)) were evaluated. Basic demographics were similar overall, with significant differences noted in race (P < 0.001) and insurance coverage (P < 0.001). Increased ED visits were noted with increased ADI in IBD patients overall (P = 0.003) as well as in the subgroup with CD (P = 0.040). Patients with increased ADI averaged fewer hours in the ED (P = 0.043), although they presented with significantly higher acuity (P = 0.007). There was a trend towards decreased GI clinic visits with increased ADI, but this did not reach statistical significance (p = 0.055). There was a significant difference between ADI quartiles in terms of those who successfully attended at least one GI clinic follow-up visit for all IBD patients (P = 0.007) and specifically for those with CD (P = 0.012). Patients with increased ADI attended fewer IBD-specific clinic follow up (P = 0.044). Significant differences regarding access to outpatient steroid-sparing therapy were seen across ADI quartiles (P = 0.044). CONCLUSION(S): Our study demonstrates increased ED utilization and decreased access to outpatient gastroenterology and IBD specialty care in IBD patients with lower socioeconomic status. Limitations include minor differences in baseline demographics including race and insurance coverage, although confounding was minimized by utilization of a comprehensive assessment of socioeconomic status through the ADI model. Our findings highlight the need for better access to outpatient IBD care in more economically deprived areas, and community health intervention programs to improve awareness of specialty care.

Improving Quality of Care in Inflammatory Bowel Disease Through Patients' Eyes: IQCARO Project.

Quality improvement is a major topic in inflammatory bowel disease (IBD) care, and measuring quality of care (QoC) is necessary for QoC improvement. Most QoC projects or consensus statements are designed from the health care professional point of view. Having QoC indicators designed for and fully evaluable by patients may provide a key tool for external evaluation of QoC improvement measures. The aim of the IQCARO project was to identify indicators to measure QoC from the IBD patient's point of view. An extensive review of the literature to identify indicators of QoC was performed; first the identified indicators were reviewed by a steering committee including patients, nurses, IBD specialists, and methodologists. Then 2 focus groups of IBD patients analyzed the QoC indicators to determine whether they could be understood and evaluated by patients. The final QoC indicators were selected by a group of IBD patients using a Delphi consensus methodology. An initial list of 54 QoC indicators was selected by the steering committee. The QoC indicators were evaluated by 16 patients who participated in 2 focus groups. They identified 21 indicators that fulfilled the understandability and evaluability requirements. The 10 most relevant QoC indicators were selected by 26 patients with IBD using a Delphi consensus. The selected items covered important aspects of QoC, including professionalism, patients' autonomy, information, accessibility, and continuity of care. The present Delphi consensus identified QoC indicators that are useful for developing and measuring improvement strategies in the management of IBD.

803 The Majority of Patients With Inflammatory Bowel Disease Are Interested in Drug Discontinuation Despite Risks

INTRODUCTION: Inflammatory bowel disease (IBD) is a chronic autoimmune condition affecting the gastrointestinal tract. Advances in immunosuppression have led to high rates of remission; discontinuation of immunosuppression is associated with a 50% risk of relapse within 2 years. The aim of this study is to determine whether patients would be interested in drug discontinuation despite this risk of relapse. METHODS: This is a retrospective study of patients in our IBD clinic in clinical remission for greater than a year with no signs of ongoing inflammation that were counseled on immunosuppression discontinuation and the risks therein. We examined the electronic health record for their age, duration of disease, disease phenotype and severity, duration of therapy, and disease characteristics (erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), fecal calprotectin, endoscopy) at time of discussion. All patients were counseled by one of two IBD specialists of a 50% risk of flare within 2 years with a 80-90% chance of recapture with the same agent that was discontinued. Decisions about which patients to offer discontinuation were at the discretion of the provider. Patients who self-elected to discontinue drugs were excluded from the study. RESULTS: 40 patients were counseled on drug discontinuation. Average age was 50.0 ± 15.0 years. Patients had an average of 15.5 ± 9.9 years of disease, and 6.1 ± 5.0 years of the therapy that was discussed for discontinuation. 39 patients (98%) wanted to discontinue drugs. 20 discontinued 6-mercaptopurine, 8 patients discontinued methotrexate, 4 patients discontinued azathioprine, 3 patients discontinued adalimumab, and 3 patients discontinued infliximab. At time of discontinuation, patients had a mean ESR of 19.3 ± 13.0 mm/hr, and a mean CRP 0.30 ± 0.54 mg/dL. After a mean 29.0 ± 16.8 months of follow up, four patients had clinically flared and were placed back on immunosuppression. The remaining 36 patients had a follow up mean ESR 20.1 ± 14.8 mm/hr and CRP 0.27 ± 0.32 mg/dL. CONCLUSION: Patients with IBD are overwhelmingly interested in drug discontinuation, with &gt;95% of patients offered discontinuation choosing to do it. In carefully selected patients, discontinuation is safe and well tolerated, with 90% of patients in biomarker and clinical remission more than 2 years after drug discontinuation.

778 Association Between Serum Albumin Levels and the Rate of Active Crohn's Disease in Patients Seen at a Tertiary Care IBD Center

INTRODUCTION: Crohn's Disease (CD) is a chronic inflammatory condition, primarily of the gastrointestinal tract with an increasing incidence and prevalence worldwide. In clinical practice, gastroenterologists are often faced with challenges in evaluating disease activity, severity, and prognosis to guide appropriate management of CD. We studied the association between serum albumin level and the rate of active clinical disease in CD patients seen at a tertiary care Inflammatory Bowel Disease (IBD) referral center. METHODS: We designed a retrospective cohort study using adult patients (&gt;18 years) with CD followed for at least one year at University of Alabama at Birmingham (UAB) IBD center by a single trained IBD specialist between 2014-2018. Serum albumin levels were divided into: low mean serum albumin (≤3.2 mg/dL) vs. appropriate mean serum albumin (&gt;3.2 mg/dL). Clinical disease activity was measured using the Harvey-Bradshaw index (HBI). Active disease was defined as HBI score of 8 or higher. Poisson Regression Models (GPR) for Rate Data were used to estimate partially adjusted and fully adjusted incidence rate ratios (IRR) of active clinical disease among CD patients. We also examined IRRs for serum albumin level as a continuous variable. RESULTS: In this single IBD practice at UAB, 269 patients with CD had albumin drawn at initial visit and serially at each subsequent visit. Poisson regression model adjusted for age, gender, race, duration of disease, steroid use, smoking and Crohns location demonstrated that CD patients with a low mean serum albumin during clinical observation were approximately 1.5 times more likely to have active clinical disease during observation (IRR 1.49, 95% CI 1.04-2.15, P = 0.032) compared to those with a serum albumin level of &gt;3.2 mg/dL. The adjusted model with serum albumin as a continuous variable demonstrated that with every unit (0.1 mg/dL) reduction in mean serum albumin, there was 30% higher likelihood of active Crohns in clinic (IRR 1.30, 95% CI 1.02-1.66, P = 0.037). CONCLUSION: Lower mean serum albumin during clinical observation is associated with a higher likelihood of active clinical disease among CD patients. Whether interventions designed to correct or increase serum albumin stores/levels in these patients would be beneficial remains to be examined.

Exclusive enteral nutrition: An optimal care pathway for use in adult patients with active Crohn's disease.

Background and AimExclusive enteral nutrition (EEN) is progressively being used as a therapeutic option for adults with Crohn's Disease (CD); however, there is no standardized approach to delivering this therapy. The aim of this study is to develop an optimal care pathway for using EEN in adults with CD. This will create a standard of care that can be used as a benchmark practice and will provide direction for future research.MethodsA working group of 12 multidisciplinary inflammatory bowel disease specialists across Australia and New Zealand was convened to develop a practical, clinically focused care pathway for using EEN in adults with active CD. Six key areas were identified as part of the care pathway: clinical indications, nutrition assessment, EEN protocol, monitoring, accessing formula, and food reintroduction. Current literature was identified via systematic review, and quality of evidence was graded. Consensus expert opinion was used where literature gaps were identified.ResultsAn optimal care pathway for using EEN in adults with CD was developed with six key consensus statements on how to use EEN in adults with active CD. These key statements identify clinical indications for use, nutrition assessment, enteral prescription and duration of therapy, monitoring criteria, food reintroduction, and the role of partial EEN. An accompanying patient resource was also developed.ConclusionEEN is recommended as a treatment option to induce remission in adults with active CD. The consensus statements developed are practical and are based on best available evidence and expert opinion to assist in developing a standardized approach to delivering EEN therapy.

Therapeutic Drug Monitoring to Guide Clinical Decision Making in Inflammatory Bowel Disease Patients with Loss of Response to Anti-TNF: A Delphi Technique-Based Consensus

Background: Loss of response is frequently encountered in patients with inflammatory bowel disease (IBD) treated with antitumor necrosis factor (TNF) agents. Therapeutic drug monitoring (TDM) and antidrug antibody measurement are increasingly used in this setting. Methods: To establish a consensus on the use of TDM in the context of loss of response to anti-TNFs, we performed a vote using a Delphi-style process followed by an expert panel discussion among 8 IBD specialists practicing in Switzerland, Europe. Statements were rated on an even Likert-scale ranging from 1 (strong disagreement) to 4 (strong agreement), based on expert opinion and the available literature. Results: The experts agreed on the following statements: (i) loss of response is associated with inadequate drug levels in both Crohn’s disease and ulcerative colitis; (ii) best timepoint for measuring drug levels is prior to the next application (= trough levels) with different thresholds for anti-TNF agents (infliximab 5 μg/mL, adalimumab 8 μg/mL, certolizumab pegol 10 μg/mL); (iii) antidrug antibodies are predictive for loss of response; and (iv) antidrug-antibody titers and drug trough levels are key determinants in the treatment algorithm. Data about non-anti-TNF biologics were considered too limited to propose recommendations. Conclusion: A Delphi-style consensus among 8 IBD experts shows that TDM and measurement of antidrug-antibody titers are useful in the context of loss of response to anti-TNF. Optimal cutoff levels depend on the type of anti-TNF. These values are critical in the decision making process. More studies are needed to address the value of such measurements for non-anti-TNF biologics.

Psychological distress is highly prevalent in inflammatory bowel disease: A survey of psychological needs and attitudes.

Background and AimData on patient needs and access to psychological services in inflammatory bowel disease (IBD) are scarce. This study aimed to describe the levels of distress and the needs, attitudes, and access to psychological services for people within Australia against established Australian IBD Standards.MethodsAn online cross‐sectional survey was conducted with Australians ≥16 years old recruited via Crohn's & Colitis Australia membership, public and private clinics, and the Royal Flying Doctor Service. K10 was used to measure psychological distress. The Chi‐square test was used to compare those with and without distress on key variables.ResultsOverall, 731 respondents provided complete data (71.5% female, mean age 46.5 years). Overall, 50% of respondents reported distress; only 15.2% were currently seeing a mental health practitioner; only 16.1% were asked about their mental health by their IBD specialist or IBD nurse; and only 12.2% reported access to a mental health practitioner as part of their IBD service. Those with psychological distress were significantly less satisfied with their IBD care; more commonly hospitalized; had an active disease, fistula or perianal disease, pain, or fatigue; and were receiving steroids, opioids, or antidepressants (all P < 0.05). As many as 68.2% of those with severe distress were not seeing a mental health practitioner.ConclusionsThe integrated biopsychosocial model of health care, with regular mental health screening and good access to mental health professionals, is requested by people living with IBD to improve their outcomes.

Differences in inflammatory bowel diseases between East and West: a Chinese perspective

Inflammatory bowel disease (IBD), a traditionally “western disease”, has recently been reported to have risen in incidence in China. We summarize differences between Chinese and Western IBD based on relevant literatures published in both Chinese and English. Relevant references published in English were collected from an electronic database via PubMed and relevant references published in Chinese were also collected. Emerging clinical epidemiological data have shown a striking rise in the incidence rate of IBD in Mainland China over the last two decades. Although the current incidence rate of IBD in Mainland China is still lower than that in Western countries, the associated disease burden might be much heavier than previously thought due to the huge population. Clinical data have shown that disease characteristics (e.g., age of onset, male/female ratio, and location and disease severity) of Chinese IBD patients are different to those of Western IBD patients. Unlike the widely used bioimmunotherapeutic agents in Western countries, the management of IBD in China relies predominately on aminosalicylates and corticosteroids. The use of bioimmunotherapeutic agents is limited to a small number of IBD patients in China. Currently, many challenges remain, including the lack of properly trained IBD specialists, poor information availability to support patient self-management, and inappropriate treatment of some patients. Based on the current findings, the disease burden, characteristics, and treatment of Chinese IBD patients are slightly different to those of Western IBD patients. There are still great improvement requirements for the clinical management of IBD in China.

Videoconference clinics improve efficiency of inflammatory bowel disease care in a remote and rural setting

Introduction Patients with inflammatory bowel disease (IBD) require long-term secondary care with periodic specialist follow-up. This can be especially challenging for patients living in remote areas. One possible solution is the implementation of videoconference (VC) clinics as a distance-management tool. Here we assessed the use of VC clinics for IBD in terms of patient safety and economic benefit for patients with IBD living in rural areas in the Scottish Highlands and Islands. Methods Eighty-eight patients participating in the IBD specialist nurses VC clinic administered via Raigmore Hospital, Inverness, Scotland, UK, between January 2016 and June 2017 were included in this study. A total of 229 appointments were assessed. Results We found the use of a VC clinic to be safe and effective as only 0.9% of appointments required urgent medical assessment and 92% of the VC clinic appointments resulted in further VC clinic follow-up. A total travelling distance of 72,245.3 km and a total travelling time of 71,688 minutes were saved in this patient cohort. It was shown that an average of US$36.61 of potential travelling cost could be saved per appointment. Discussion VC clinics represent a patient-centred participatory model of care for IBD patients living in remote areas with enormous time- and cost-saving potential while being safe and effective. Further investigations into patient satisfaction and the combination with other telemedicine tools such as telephone conferencing and mobile phone applications are needed to evaluate the full potential of the concept.

Modeling determinants of satisfaction with health care in youth with inflammatory bowel disease part 2: semiparametric distributional regression.

Background: Methodological challenges arise with the analysis of patient satisfaction as a measure of health care quality. One of them is the necessity to adjust for differences in patient characteristics or other variables. A combination of several helpful extensions to regression analysis is shown based on patients with inflammatory bowel disease (IBD) to help identify important covariates associated with the distribution of satisfaction.Patients and methods: Analyses were based on cross-sectional data from a postal survey on the health care of patients with IBD aged 15–25, with satisfaction assessed using a 32-item validated questionnaire weighing experience by perceived relevance. The weighted summary score was modeled using a Beta distribution in a generalized additive model for location, scale and shape. Covariates were distinguished in 3 groups and the model was entered in separate, consecutive analyses. First, demographic and disease-related variables were included. Next, information about the IBD specialist was added. The third step added care quality indicators. Results are presented as OR with 95% CI.Results: In the survey, 619 questionnaires were returned and the data set had 453 complete cases for analysis. Satisfaction appeared increased for patients working (OR 1.59, 95% CI: 1.19–2.11) or studying (1.25, 1.00–1.56) as compared to those still at school or in non-academic job training. High anxiety scores and an older age of onset were associated with lower satisfaction. The variation of satisfaction is higher for patients with Crohn’s disease or who have statutory insurance (1.19, 1.01–1.40 and 1.22, 1.06–1.40).Conclusion: Modeling the entire distribution of the response uncovered additional influences on the variance of patient satisfaction not previously identified by classical regression. It also resulted in a richer model for the mean. The construction of a combined model for different features of the distribution also helped to improve the control of confounding.

Appropriate Therapeutic Drug Monitoring of Biologic Agents for Patients With Inflammatory Bowel Diseases

Therapeutic drug monitoring (TDM) is widely available for biologic therapies in patients with inflammatory bowel disease (IBD). We reviewed current data and provided expert opinion regarding the clinical utility of TDM for biologic therapies in IBD. We used a modified Delphi method to establish consensus. A comprehensive literature review was performed regarding the use of TDM of biologic therapy in IBD and presented to international IBD specialists. Subsequently, 28 statements on the application of TDM in clinical practice were rated on a scale of 1 to 10 (1 = strongly disagree and 10 = strongly agree) by each of the panellists. Statements were accepted if 80% or more of the participants agreed with a score ≥7. The remaining statements were discussed and revised based on the available evidence followed by a second round of voting. The panel agreed on 24 (86%) statements. For anti-tumor necrosis factor (anti-TNF) therapies, proactive TDM was found to be appropriate after induction and at least once during maintenance therapy, but this was not the case for the other biologics. Reactive TDM was appropriate for all agents both for primary non-response and secondary loss of response. The panellists also agreed on several statements regarding TDM and appropriate drug and anti-drug antibody (ADA) concentration thresholds for biologics in specific clinical scenarios. Consensus was achieved towards the utility of TDM of biologics in IBD, particularly anti-TNF therapies. More data are needed especially on non-anti-TNF biologics to further define optimal drug concentration and ADA thresholds as these can vary depending on the therapeutic outcomes assessed.

Updates in the management of inflammatory bowel disease during pregnancy.

The best pregnancy outcomes for women with inflammatory bowel disease (IBD) occur when their disease is in remission at conception and remains in remission throughout pregnancy. Active IBD can lead to adverse pregnancy outcomes, including spontaneous abortion, pre-term birth and low birthweight. The majority of women with IBD who are taking maintenance medication will require medication throughout the pregnancy to prevent disease relapse. Most IBD medications are considered safe in pregnancy and breastfeeding, except for methotrexate. Pre-conception counselling should be arranged with the patient's IBD specialist and should include discussions regarding the importance of optimising disease control before and during pregnancy as well as the medication management plan for pregnancy. Patients with IBD should be reassured that their fertility is normal when the disease is quiescent, with the exception of women who have had pelvic surgery. IBD activity should be carefully monitored during pregnancy using non-invasive techniques, and disease flares during pregnancy should be treated promptly with escalation of therapy in consultation with the patient's IBD specialist. Mode of delivery should be determined by obstetric need; however, caesarean delivery is preferred for women with a history of ileal pouch anal anastomosis surgery or active perianal Crohn's disease.

Examining the Association Between Referral Quality, Wait Time and Patient Outcomes for Patients Referred to an IBD Specialty Program.

BackgroundMost speciality inflammatory bowel disease (IBD) care can only be accessed through a referral. Timely access to specialty care has been associated with improved disease-related outcomes. To receive appropriate care, the referral needs to include high-quality information. To date, no research has explored the association between referral quality and IBD patient outcomes. The study objectives were to determine if the quality of referrals to a collaborative IBD program influenced triage accuracy, wait times and patient outcomes.MethodsTwo hundred referrals to a collaborative IBD program in Canada for patients with confirmed or suspected IBD were reviewed. Referral quality was evaluated using an evidence- and consensus-based metric. The association between referral quality and patient outcomes (wait time, hospitalizations, disease flares and additional referrals) for semi-urgent referrals was assessed through multivariate analysis.ResultsThe majority of referrals for IBD speciality care were categorized as being low quality. Referral quality was not significantly associated with any of the patient outcomes; however, longer wait times significantly increased the occurrence of disease flares, hospitalizations and additional referrals while waiting for an IBD specialist appointment.ConclusionProlonged wait times for IBD patients are significantly associated with poor patient outcomes and increased costs for the health care system. Although there is literature that suggests that referral quality may be associated with wait time, it is still unclear how it relates to wait time and patient outcomes. Moving forward, the current referral process needs to be critically addressed in order to improve wait times and patient outcomes.

06 FOCUSING ON THE FUTURE: REDUCING BARRIERS AND IMPROVING ACCESS TO IBD SPECIALTY CARE

Inflammatory Bowel Disease (IBD) is a chronic, immune-mediated disease that affects approximately two million North Americans. Canada has the highest age-adjusted incidence and prevalence rates of IBD globally. Given its cumulative prevalence, the IBD clinical burden in North America continues to grow. Limitations in accessing specialty healthcare services is not a new issue facing patients and healthcare providers. Despite this persistent problem, no research elucidating the patient perspective using qualitative approaches to compare and contrast the patient experience across diverse geographic regions has been conducted. The aim of the current study was to elicit a qualitative stream of data to better understand phenomena related to access to healthcare for Canadians living with IBD from a patient-centered perspective. IBD patients (≥18 years of age) were recruited from gastroenterology clinics and communities through IBD specialists and Crohn’s & Colitis Canada. Patients were recruited from both urban and rural locales to ensure adequate representation from geographically diverse regions. Focus groups provided a powerful and more naturalistic tool through which a focused understanding of the patient experience was derived. Co-facilitated by a researcher and a patient research partner, the focus groups were held in Nova Scotia, New Brunswick, Quebec, Ontario, Manitoba, Saskatchewan, Alberta, and British Columbia. Patient demographics were collected to contextualize observed themes. Themes were distilled through qualitative thematic analysis using Atlas.ti software to ascertain congruence or discordance of patient experiences. Eastern Canadian focus groups have been completed, with recruitment underway for the Western Canadian focus groups. A total of 20 participants were recruited as of October 2018. The majority of participants were male (11/20, 55%) and were from urban/suburban regions (10/20, 50%). The mean age of participants was 44 years of age (SD=12 years, range=24 to 67 years). Preliminary analyses show that the main patient-identified barriers to accessing IBD care fall into the following categories: 1) Lack of multidisciplinary care (including psycho-social support), 2) Diagnostic delay, and 3) Inability to effectively receive and provide communication with healthcare providers. Solutions identified by patients included: 1) Integration of more holistic care into the clinical practice, 2) Readily accessible psychiatric and nutritional support, 3) Increased patient advocacy, and 4) Continuity and liaison through provision of a healthcare navigator resource. Healthcare access for IBD patients is complex. It is important to not only have a robust understanding of the healthcare system structure and processes but also the significant impact these factors have on patients. Access improvement research can be best tackled through patient-centered exploration of themes related to access to care.

P096 EXAMINING VARIATION IN THE DIAGNOSIS OF IBD TO STRENGTHEN INTERNATIONALLY COLLABORATIVE RESEARCH

Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), is increasing in incidence in many countries of the world, especially in countries were infectious colitis are still prevalent. One challenge of research combining IBD patients from different international centers is the possibility that practice variation may affect the diagnosis and treatment decisions at each country. We aim to examine the variation in the diagnosis of IBD using survey-administered clinical vignettes to validate international cooperation in research. Participating organizations included the Crohn’s & Colitis Foundation, the Asian Organization for Crohn’s & Colitis (AOCC), the Asian Pacific Association of Gastroenterology (APAGE), the Crohn’s & Colitis Foundation of India, the European Crohn’s and Colitis Organisation (ECCO), and the Lebanese Society of Gastroenterology (LSGE). Gastroenterologist and IBD specialist survey respondents were presented 3 clinical vignettes. First the entire H&P and laboratory values were given and participants selected an initial diagnosis. Then the colonoscopy stills and pathology report were given for a final diagnosis. The diagnoses listed in multiple choice format were CD, UC, IBD-U, TB, CMV, C. difficile, parasitic, lymphocytic, collagenous, NSAID-induced or other colitis. In this exploratory analysis, we used the Cochran-Mantel-Haenszel statistic to look at the consensus in final diagnosis of IBD colitis (CD, UC or IBD-U) or infectious colitis (TB, CMV, C. difficile or parasitic etiologies) or other forms of colitis (lymphocytic, collagenous, NSAIDs-induced or other etiologies) between Asia, Europe and North America. We also looked at the change of diagnosis once colonoscopic and pathologic data were presented. We analyzed 269 participants. 61.5% were from Asia, 15.2% were from Europe and 23.4% were from North America. 78.8% were GI attendings and 10.8% were fellows in training. 41.3% completed specialized IBD training. 21.2% had an IBD-heavy patient cohort (>50% of all patients seen). 77.3% completed their medical education, training and practice in the same country. The general median year in practice was 6, ranging between -1 (still in training) to 61 years. Table 1 shows that there was consensus among the different causes of colitis in 9 out of 10 cases. Said case was diagnosed as IBD by 62.5% of European, while participants from Asia and North American diagnosed the case as infectious colitis (62.5% and 81.8% respectively). Otherwise, there was consensus in the same diagnosis type after reviewing colonoscopic and pathologic data in all ten cases. The study showed nominal variation in diagnosis of IBD around the world. There is no need to account for such variation when conducting international clinical trials.

06 FOCUSING ON THE FUTURE: REDUCING BARRIERS AND IMPROVING ACCESS TO IBD SPECIALTY CARE

Inflammatory Bowel Disease (IBD) is a chronic, immune-mediated disease that affects approximately two million North Americans. Canada has the highest age-adjusted incidence and prevalence rates of IBD globally. Given its cumulative prevalence, the IBD clinical burden in North America continues to grow. Limitations in accessing specialty healthcare services is not a new issue facing patients and healthcare providers. Despite this persistent problem, no research elucidating the patient perspective using qualitative approaches to compare and contrast the patient experience across diverse geographic regions has been conducted. The aim of the current study was to elicit a qualitative stream of data to better understand phenomena related to access to healthcare for Canadians living with IBD from a patient-centered perspective. IBD patients (≥18 years of age) were recruited from gastroenterology clinics and communities through IBD specialists and Crohn’s & Colitis Canada. Patients were recruited from both urban and rural locales to ensure adequate representation from geographically diverse regions. Focus groups provided a powerful and more naturalistic tool through which a focused understanding of the patient experience was derived. Co-facilitated by a researcher and a patient research partner, the focus groups were held in Nova Scotia, New Brunswick, Quebec, Ontario, Manitoba, Saskatchewan, Alberta, and British Columbia. Patient demographics were collected to contextualize observed themes. Themes were distilled through qualitative thematic analysis using Atlas.ti software to ascertain congruence or discordance of patient experiences. Eastern Canadian focus groups have been completed, with recruitment underway for the Western Canadian focus groups. A total of 20 participants were recruited as of October 2018. The majority of participants were male (11/20, 55%) and were from urban/suburban regions (10/20, 50%). The mean age of participants was 44 years of age (SD=12 years, range=24 to 67 years). Preliminary analyses show that the main patient-identified barriers to accessing IBD care fall into the following categories: 1) Lack of multidisciplinary care (including psycho-social support), 2) Diagnostic delay, and 3) Inability to effectively receive and provide communication with healthcare providers. Solutions identified by patients included: 1) Integration of more holistic care into the clinical practice, 2) Readily accessible psychiatric and nutritional support, 3) Increased patient advocacy, and 4) Continuity and liaison through provision of a healthcare navigator resource. Healthcare access for IBD patients is complex. It is important to not only have a robust understanding of the healthcare system structure and processes but also the significant impact these factors have on patients. Access improvement research can be best tackled through patient-centered exploration of themes related to access to care.

P776 Factors associated with quality of care perceived by patients in IBD units from Spain. Analysis from IQCARO project

Measuring patient’s perceived quality of care (QoC) in inflammatory bowel disease (IBD) units is becoming increasingly important. The aim of this analysis was to assess the factors associated with QoC of IBD units from Spain, by measuring the fullfillment of a validated score of indicators by patients followed up by IBD specialists or general gastroenterologists (GG). A survey was developed including patient’s sociodemographic and clinical characteristics, as well as the final validated top 10 indicators of QoC. The survey was distributed online through the Spanish Association of Patients with Crohn's disease and ulcerative colitis (ACCU) webpage. In the multi-variate analysis the QoC index score was dichotomised (high quality/low quality) with a cut-off point of 9.5 to be used as a dependent variable in a binary logistic regression model to determine the factors that can influence the evaluation of QoC as high. Online-completed surveys from 640 patients were valid for analysis, with 451 patients (70%) being attended by IBD specialist and 138(30%) by GG. The population included patients from the 17 Spanish autonomous communities, and 183 sites. Mean age was 42.3 years, and mean disease duration 13 years. Sixty-six per cent were women and 60.7% were diagnosed with Crohn’s disease. The QoC index mean was 7.8/10 being higher (meaning better QoC) in patients attended by IBD specialists vs. GG: 8.2 vs. 6.7, respectively, p < 0.001. We found no differences regarding disease activity ,number of flares, hospitalisations, emergency room visits in the last year or patients′ perception of disease control in the last 2 weeks, in patients attended by IBD specialist vs. GG, p = NS for all. When we analysed the QoC index score as a dichotomised variable, in the univariate analysis we found that older patients, longer disease duration, routine follow-up by IBD specialist, and better perception of controlled disease were all associated with high quality index score. Active disease, unscheduled visits in the last year, higher number of flares, and unemployed patients perceived low quality index score. The multi-variate analysis showed that employed patients, controlled disease, low number of unscheduled visits and being treated by an IBD specialist were all associated with a higher QoC index score. Binary logistic regression analysis. The evaluation of QoC by IBD patients from Spain is good but is higher when they are followed-up by IBD specialists. Personal and disease-related aspects may influence in the perceived QoC.