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Background: End-stage liver disease (ESLD) patients carry heavy symptom burdens and risk receiving aggressive and sometimes unwanted care at end of life. Palliative care (PC), which aims to alleviate symptoms and facilitate goal-concordant care in serious illness, may offer substantial benefits for ESLD patients but is not widely provided. Objectives: To assess the impact of PC integrated within hepatology (PCIH) services on health care utilization, advance care planning (ACP), and hospice enrollment. Design: We compared patients who received PCIH (n = 55) to a retrospective cohort (n = 57) receiving usual care in an outpatient hepatology clinic. Setting/Subjects: From June 2016 to November 2017, we enrolled patients receiving care in a U.S. public hospital clinic who met the following inclusion criteria: (1) ESLD with a Model for End-Stage Liver Disease score ≥20, (2) hepatology approval for PC referral, and (3) at least one advanced complication of ESLD. Measurements: We assessed patient demographics, clinical information, health care insurance status, health care utilization, completion of psychosocial assessments, and ACP using two-sided Fisher's exact test and Mann-Whitney U tests. Results: Patients receiving PCIH more frequently had goals of care discussions (87.3% vs. 21.2% p ≤ 0.01), completed ACP documentation (56.4% vs. 7.0%, p ≤ 0.01), psychosocial assessments (98.2% vs. 35.1%, p ≤ 0.01), and hospice enrollment (25.5% vs. 7.0%, p = 0.01). Patients receiving PCIH who were hospitalized also had fewer mean hospitalization days (13 vs. 19.7 days, p ≤ 0.01). Conclusions: Embedding PC services in a hepatology clinic is a promising strategy to improve care for ESLD patients in public hospitals.

BACKGROUND Although previous studies have shown that participating in a structured national quality improvement program improves healthcare utilization for patients with inflammatory bowel disease (IBD), it is not known whether the extent of active participation influences health outcomes. Patients in the IBD Qorus Learning Health System self-report symptoms and treatment goals prior to clinic visits via electronic surveys, which facilitates disease surveillance and patient-provider co-production of care. This study assesses the relationship between active patient participation and IBD-related healthcare utilization outcomes. METHODS We reviewed electronic health records and surveys of patients with IBD from a private community gastrointestinal practice participating in Qorus for two years after they submitted the first pre-clinic survey. The study period was from 2016 to 2021. Primary outcomes were times from the first survey to an IBD-related ED visit/hospitalization, urgent message*, and CT-scan use. Participation score was calculated as a ratio of eligible surveys (submitted within two weeks prior to clinic visits) to the number of clinic visits, with a ratio RESULTS Out of 244 patients, 122 were inactive participants and 122 were active participants. Among inactive participants, 23.8% experienced an IBD-related ED visit/hospitalization, 27.9% sent an urgent message, and 12.3% received a CT scan. Among active participants, 18.9 % experienced an IBD-related ED visit/hospitalization, 21.3% sent an urgent message, and 12.3% received a CT scan (Table 1). Active and inactive (reference) Qorus participants were not statistically different in their healthcare utilization: ED visit/hospitalization (HR 0.61[95% CI 0.34-1.09]), sending an urgent message (HR 0.68 [95% CI 0.40-1.15]), and CT scan use (HR 1.00 [95% CI 0.47-2.13]), after adjusting for confounders (Table 2). CONCLUSION Although active participants show numerically less frequent ED visit/hospitalization and urgent message than inactive participants, there was not a statistically significant association between participation and healthcare utilization. A greater sample size is needed to draw further conclusions to inform future strategies to engage patients and optimize health outcomes.

BACKGROUND Patient-provider co-production of care is integral to managing inflammatory bowel diseases (IBD), chronic and incurable conditions that affect patients’ quality of life. Patients in the IBD Qorus Learning Health System self-report symptoms and treatment goals prior to clinic visits via electronic surveys, which helps their providers develop patient-centered treatment plans. This study examines factors that predict patients’ active participation in the program to inform future strategies to promote programmatic engagement and continuity of care. METHODS A retrospective cohort study was performed using electronic health records and survey results from a private community gastrointestinal practice engaged with Qorus between 2016 and 2021. Patients with IBD who consented to participate in Qorus were followed for two years after they submitted the first pre-clinic visit survey. The primary outcome was the ratio of eligible surveys (submitted within two weeks prior to clinic visits) to the number of clinic visits, with a ratio RESULTS Among 244 patients who met the inclusion criteria, 122 were inactive participants and 122 were active participants. Inactive participants completed a median of 0 (IQR 0-1) surveys and 3 (IQR 1-5) clinic visits, while active participants completed a median of 2 (IQR 1-3) surveys and 2 (IQR 2-4) clinic visits (Table 1). Multivariable logistics regression shows that older age, history of anxiety or depression, and higher number of clinic visits were associated with inactive participation. Compared to the age group 18-24 years old, patients ≥35 were less likely to participate actively: 35-44 (OR 0.32 [95% CI 0.11-0.90]), 45-54 (OR 0.24 [95% CI 0.07-0.72]), ≥55 (OR 0.34 [95% CI 0.12-0.94]). Patients with a history of anxiety or depression showed less active participation than those without (OR 0.44 [95% CI 0.25-0.77]). Higher number of clinic visits was also associated with less active participation (OR 0.88 [95% CI 0.78-0.99]) (Table 2). CONCLUSION Age ≥35, history of anxiety or depression, and frequent clinic visits were associated with less active participation in an IBD Learning Health System. Lack of familiarity with digital health resources, concomitant mental health disorders, or participation fatigue may potentially explain these findings. Further research is needed to investigate the causes of inactive participation to design interventions that address these causes.

BACKGROUND AND AIMS A treat-to-target (TTT) strategy of aiming for symptomatic and endoscopic remission is recommended for the management of inflammatory bowel diseases (IBD). Yet, real-world uptake of TTT strategies has been modest. We sought to assess the feasibility of implementing TTT and improve its uptake in the Crohn’s and Colitis Foundation’s IBD Qorus learning health system (LHS). METHODS We examined an ‘intention to TTT’ for each eligible clinic visit (patients not in endoscopic remission on most recent evaluation) across a multi-center LHS over a 12-month period (November 2020-November 2021). ‘Intention to TTT’ (or TTT score) was defined as an affirmative response to all three of the following: (1) Was treat-to target discussed with patient?, (2) Was objective assessment for inflammation (endoscopy, radiology and/or fecal calprotectin) performed within the preceding 12m?, (3) Is there an intention to change treatment since target has not been reached? Over a 12-month breakthrough series (BTS) collaborative, we sought to improve implementation of TTT with monthly report cards, webinars, an active listserv and two all-Qorus learning sessions. Changes in rates of ‘intention to TTT’ were examined over 12 months, overall and at each site, with an earliest clinically meaningful signal of improvement defined a priori as 2% increase per month. In secondary analyses, we compared overall rates of achieving endoscopic remission and corticosteroid-free clinical remission in sites with improvement in rates of ‘intention to TTT’ relative to sites without improvement (only sites with valid data for 8/12 months). RESULTS Over 12 months, there were 7934 patient visits across 38 sites in the collaborative; patients in 37% visits (n=2913) were not in endoscopic remission at time of visit. Overall, rates of ‘intention to TTT’ increased from 23% at the beginning of the BTS, to 49% at the end of the BTS, corresponding to a clinically significant 2.4% per month increase in rates of implementing TTT (Figure 1). While rates of discussion of TTT (88% of eligible visits) and intending to adjust therapy (70% of eligible visits) were consistently high, there was a significant increase in objective evaluation for inflammation during the course of the BTS. There was considerable variability across sites in rates of ‘intention to TTT’. Comparing 9/14 sites with improvement in rates of implementing TTT vs. 5/14 sites without improvement, there were trends towards increasing rates of site-level endoscopic remission and steroid-free clinical remission (Figure 2). CONCLUSIONS Through a quality improvement initiative in a LHS, rates of ‘intention to TTT’ increased significantly over 12-months. This improvement in implementation of TTT was accompanied by increase in rates of achieving endoscopic remission and steroid-free clinical remission.

BACKGROUND Social factors such as race, education, and financial hardships have been shown to affect health outcomes of patients with inflammatory bowel disease (IBD). Although early identification of socially vulnerable patients is critical for targeted interventions, it is still limited by screening tools that are incomprehensive and time-consuming. We investigate the utility of the social vulnerability index (SVI), a census tract-specific measure estimated by the Centers for Disease Control and Prevention, for predicting patients' healthcare utilization, based on 15 different social determinant variables including employment, housing, and transportation. METHODS We reviewed the electronic health records and surveys of patients with IBD at a private community practice enrolled in IBD Qorus Learning Health System, a national quality improvement consortium, from 2016-2021. Each patient's home address was mapped to an SVI value, ranging from 0 to 1 and increasing as the patient's vulnerability increased. An SVI was considered low if it was less than the median SVI and high if it was greater than or equal to the median SVI. Cox proportional hazards regression was performed to determine the relationship between SVI and healthcare utilization (IBD-related ED visit/hospitalization, urgent message*, and CT scan use), controlling for potential confounders such as IBD subtype, baseline clinical disease activity, physician global assessment, steroid use, and six-months-prior IBD-related ED visit/hospitalization and CT scan use. The “survival time” was defined as the time from when the patient first joined the program to IBD-related healthcare utilization events, loss of follow-up in the electronic health records, or the end of the study period, whichever occurred earliest. RESULTS Among 280 eligible patients, the median SVI was 0.288 (IQR 0.121-0.433) (Figure 1). Among the low SVI group, 16.4% experienced an IBD-related ED visit/hospitalization, 20.0% sent an urgent message, and 10.0% received a CT scan. Among the high SVI group, 23.6% experienced an IBD-related ED visit/hospitalization, 26.4% sent an urgent message, and 12.9% received a CT scan. High and low SVI groups (reference) were not significantly different in their healthcare utilization: ED visit/hospitalization (HR 1.66 [95% CI 0.96-2.89]), sending an urgent message (HR 1.62 [95% CI 0.94-2.70]), and CT scan use (HR 2.31 [95% CI 0.98-5.47]), after adjusting for confounders (Table 1). CONCLUSION IBD-related healthcare utilization was not associated with social vulnerability at the census tract level in this cohort. The lack of statistical significance was likely due to the cohort’s low sample size and lack of demographic variability (92% white and 96.8% non-Hispanic). Additional research with a larger and more diverse sample may help clarify the association between SVI and outcomes.

INTRODUCTION Crohn’s perianal fistulae (CPF) impact the physical, emotional, and social wellbeing of patients. Despite the high biopsychosocial burden of CPF, limited data exist regarding how patients navigate challenges associated with this complication of CD and how they perceive treatments. Social media offers a rich opportunity to gain an in-depth understanding of the impact of CPF on patients’ daily lives outside of controlled environments. In this study, we used social media to examine patients’ experiences and concerns with CPF and assess its impact on their behavior and overall wellbeing. METHODS We used a mixed-method approach to examine 119,986 publicly available posts related to CPF from 10 US CD forums between 1/1/10-1/1/20. We randomly selected 700 posts for qualitative analysis using an inductive thematic approach. A latent Dirichlet allocation probabilistic topic model was applied to explore themes in an unsupervised manner within the collection of the 119,986 posts. Fifty topics were generated and manually reviewed to identify themes, which were compared to the themes identified in the qualitative data analysis. RESULTS We distinguished 4 main themes and several subthemes that were also identified in the qualitative thematic analysis. In 38% of the posts, patients used social media to seek peer-support and information about CPF symptoms, treatments, diet, experimental therapies, natural remedies, and patients’ apprehension regarding treatments. Moreover, 30% of the posts focused on discussions surrounding the biopsychosocial burden of CPF. Patients reported pain and constant discomfort, psychological effects including stress symptoms, distress, and fear, as well as social impact on work and intimate relationships. In 21% of the posts users discussed challenges associated with CPF treatments including financial challenges, unsuccessful procedures/treatments, recurrence of CPF post-treatment, and lack of information on CPF treatments. Lastly, 15% of the posts involved patients’ experiences with medications and surgeries such as efficacy of treatments, side effects experienced and complications. While the quantitative analysis revealed an additional subtheme related to financial challenges and local and topical care, the qualitative analysis revealed an additional subtheme related to patients’ apprehension to undergo treatments (Figure 1). DISCUSSION Social media analysis reveals a dynamic range of themes governing patients’ perspectives and experiences with CPF. The use of a mixed-methods approach generated complementary insights regarding patients’ need for information about CPF, the biopsychosocial burden of CPF, the different encountered challenges with treatment and the difficulty to navigate among available management options. These results highlight a gap in patient educational needs for CPF.

INTRODUCTION A growing body of data from the primary care population demonstrates that health confidence (a patient’s belief of their ability and agency to manage their disease and impact the disease course) is an important psychosocial factor associated with chronic disease outcomes (e.g., blood pressure and glycemic control) and emergency department [ED] visits.[1] Health confidence has also been shown to be associated with inflammatory bowel disease (IBD) symptomatic burden, general well-being, and healthcare utilization.[2] We aim to explore factors that influence health confidence and examine its impact on IBD disease outcome and healthcare utilization in a longitudinal, multi-institutional cohort of adults with IBD. METHODS We surveyed adults (age >18) with IBD and their GI providers (verified IBD diagnosis phenotype) at 11 GI clinics across the U.S. as part of the Crohn’s and Colitis Foundation’s IBD Qorus Learning Health System. Included patients reported health confidence, disease activity, and healthcare utilization at baseline and on follow-up 6-12 months thereafter between 2018 and 2021. Health confidence was assessed using the validated Wasson’s health confidence Likert scale from 0 (‘not confident at all’) to 10 (‘very confident’).[1] We identified patient characteristics associated with health confidence using the Kruskal-Wallis test. A Fisher’s exact test was used to examine the associations between baseline low vs high health confidence (score RESULTS Adults with IBD (n=327; 62% Crohn’s disease, 35% ulcerative colitis; 47% in remission) had a median baseline health confidence score of 8 (IQR 7-10; Table 1). Patients with low health confidence (score CONCLUSION Symptomatically active disease and ED visits may undermine patients’ confidence to manage their disease, which in turn increases the frequency of subsequent radiographic diagnostic testing. Opioid use was correlated with low health confidence both as a predictor and outcome in this cohort. REFERENCES 1. Wasson, J. et al. Family practice management 21.5 (2014): 8-12. 2. Tse, C. S., et al. Gastroenterology 160.6 (2021): S-58.

BACKGROUND Although validated patient-reported outcome measurements (PRO) can categorize patients with inflammatory bowel disease (IBD) into remission or active disease, patients may have different definitions of remission. Patients may assume a new normal with altered bowel habits/abdominal pain after diagnosis or consider themselves to have active disease even though disease activity measures show remission. We aim to examine concordance between patient-defined remission and remission based on PRO-2 (ulcerative colitis; UC) or PRO-3 (Crohn’s disease; CD), and associations with demographic and disease-related factors. METHODS We retrospectively analyzed 3257 de-identified surveys from 2004 unique patients (806 UC; 1198 CD) who consented to participate in the Crohn’s and Colitis Foundation’s IBD Qorus Learning Health System. Surveys were collected at IBD clinic visits between September 2019 and February 2021. We used logistic regression models with generalized estimating equations to analyze the sensitivity, specificity, concordance, and discordance between patient-defined remission (yes/no) and PRO-defined remission (PRO-2: stool frequency, rectal bleeding; PRO-3: stool frequency, abdominal pain, wellbeing). We also examined steroid-free PRO remission (PRO-defined remission plus absence of steroids). RESULTS In CD, 63.3% of patients with inactive disease based on PRO-3 considered themselves in remission (adjusted sens=0.62). Discordance was more common among patients with 15 years; OR 2.6) and those who did not use prednisone (OR 3.0) and opioids (OR 5.4). In UC, 77% of patients with inactive disease based on PRO-2 considered themselves in remission (adjusted sens=0.77). Discordance was more common among patients with disease duration of 15 years (OR 2.3). Among patients with active disease based on PRO-2, 19.2% considered themselves in remission (adjusted spec=0.79) and discordance was more common in patients who did not use prednisone (OR: 2.2). Age and gender were not associated with discordance. Results were similar with steroid-free PRO defined remission (Table 2). CONCLUSION Discordance between how patients and PRO measures define remission is common. Patients with shorter disease duration were more likely to report active disease when they were in remission while patients with longer disease duration were more likely to report remission while they still experienced symptoms. 1 in 3 (32%) assessments of disease remission were discordance among patients with CD, and 1 in 4 (22%) in patients with UC.

BACKGROUND Important knowledge gaps have been identified related to the causes and symptoms of inflammatory bowel disease (IBD) and medical treatments and their side effects. Patients with IBD turn to social media to learn more about their disease. However, such information found on the web is misleading and often of low quality. OBJECTIVE This study aims to gain an in-depth understanding of the unmet educational needs of patients with IBD and to use the resulting insights to develop a collection of freely available, evidence-based educational videos optimized for dissemination through social media. METHODS We used design thinking, a human-centered approach, to guide our qualitative research methodology. We performed focus groups and interviews with a diverse sample of 29 patients with IBD. Data collection was performed in 3 phases (inspiration, ideation, and implementation) based on IDEO design thinking. Phase 1 offered insights into the needs of patients with IBD, whereas phases 2 and 3 involved ideation, prototyping, and video testing. A thematic analysis was performed to analyze the resulting data. RESULTS Patients emphasized the need for educational videos that address their challenges, needs, and expectations. From the data analysis, 5 video topics and their content emerged: IBD treatments’ risks and benefits; how to be a self-advocate; how to stay healthy with IBD; how to cope with IBD; and educating families, friends, and colleagues about experiences of patients with IBD. CONCLUSIONS Design thinking offers a deep understanding and recognition of the unmet educational needs of patients with IBD; this approach informed the development of 5 evidence-based educational videos. Future research will formally test and disseminate these freely available videos through social media.

Background Patients with inflammatory bowel disease (IBD) have chronic, life-long diseases with relapsing-remitting pattern that often require frequent utilization of healthcare services.[1] Urgent access to specialty care can help identify patients with acute medical needs so they can receive appropriate care in a timely manner. This can avoid unnecessary high-cost medical interventions, such as visits to the emergency department (ED), which often lead to excess use of steroids, narcotics, and radiographic imaging, all important measures of quality of IBD care.[2] We sought to introduce an access/quality improvement program at a private gastroenterology practice with the goal of triaging and returning urgent calls from IBD patients in a timely manner and mitigate avoidable visits to the ED. Methods Gastroenterologists, nurses, and support staff at our private practice developed four criteria for “urgent” IBD calls: new, severe abdominal pain; new, severe anal pain; fever greater than 101 Fahrenheit; and refractory emesis. Patient calls that met any of these criteria were highlighted with a red flag and labelled as “IBD URGENT” by support staff in the electronic medical system. The primary gastroenterologist (or covering provider) then responded to these calls as soon as possible with a goal of responding within 4 hours. Subsequently, patients were advised to go to the ED for further emergent evaluation, given same/next day clinic visits, and/or given advice, such as medication changes, by the gastroenterologists. Results Over a 15-month period from June 2018 to August 2019, we received a total of 167 “IBD URGENT” calls (average 11 calls per month); of these, 92% (153 calls) received a response from a gastroenterologist within 4 hours. Abdominal pain, diarrhea, blood in the stools, and vomiting were the most common reasons for urgent calls. Only 10% (16 calls) of calls were patients with worrisome symptoms in which they were advised to go to the ED, 37% of calls led to same/next day clinic visits (62 calls), and 58% resulted in advice/orders from the gastroenterologist such as laboratory testing, medication continuation/changes (97 calls); 12% (20 calls) resulted in both urgent clinic visits and advice (e.g., obtain laboratory testing and then present for office visit). Conclusion We piloted an urgent care hotline for IBD patients to receive rapid medical access at a private community gastroenterology practice. The majority of patients were successfully managed with outpatient medical care, including same/next-day office visits and advice for laboratory testing/medication changes. Only a minority (10%) of calls resulted in ED visits. We plan to continue this project with the aim to return more than 90% of the urgent calls within 4 hours. References

Background The goals of managing inflammatory bowel disease (IBD) include eliminating disease symptoms, improving quality of life, and preventing disease progression/complications. In patients with chronic illnesses, their perception of the illness, emotional reactions, and concerns about the disease/treatment can influence self-management behaviors and their quality of life.[1] Studies of IBD patients’ self-reported disease concerns and subjective perceptions of quality of life are lacking. Here, we aim to understand IBD patients’ top concerns and goals using survey data collected within IBD Qorus, a nationwide Learning Health System for IBD with approximately 40 participating sites. Methods We conducted a qualitative content analysis on an open-ended question that was sent to IBD patients prior to their clinic visits with an IBD Qorus provider: “Currently, what is your number ONE concern or goal related to your IBD? This could be related to a specific symptom (e.g., diarrhea), worry for the future (e.g., need for surgery, cost of care) or how IBD might impact an upcoming life event (e.g., wedding, travel). Or you can report that you have no current concerns or goals.” Using the inductive approach, two independent researchers (who are not involved with direct clinical care of IBD Qorus patients) coded the responses into major and minor themes, which were then discussed with a third independent coder (an IBD Qorus provider). Each response received one or more codes (if multiple themes were mentioned). Results In the first 100 responses from a purposeful sample of six IBD Qorus sites (3 academic and 3 community sites in diverse rural and urban geographic locations), four domains of goals/concerns were identified: symptoms and goals for the symptoms (28/100), medication and their efficacy/side effects (28/100), IBD clinical course and management (29/100), and psychosocial effects of IBD (29/100) (Figure 1). The most common themes in each domain were: abdominal pain and fecal urgency (symptoms), biologics and side effects (medications), surgery and nutrition (IBD clinical course and management), and fear/worry and traveling (psychosocial effects) (Figure 1). Fives responses contained no concerns/goals and three were uncodeable. Conclusion IBD patients’ disease-related concerns and goals are broad and diverse, and our study suggests that they are evenly distributed between symptoms, medications, disease course, and psychosocial effects. Understanding patients’ perceptions about the disease and the types of information they desire can aid providers to create and achieve shared treatment goals. Reference