Concordance and Discordance Between Patient-reported Remission, Patient-reported Outcomes, and Physician Global Assessment

BACKGROUND: Although validated patient-reported outcome (PRO) measurements can categorize patients with inflammatory bowel disease (IBD) into clinical remission or active disease, patients may have different definitions of remission. The purpose of this study was to compare patient-defined remission to remission based on PRO measures and physician global assessment (PGA) and to understand the clinical and demographic factors associated with disagreements. METHODS: We retrospectively analyzed 3257 de-identified surveys from 2004 IBD patients who consented to participate in the Crohn's and Colitis Foundation's IBD Qorus Learning Health System between September 2019 and February 2021. We used logistic regression models with generalized estimating equations to analyze the clinical and demographic factors (eg, age, disease duration, health confidence) associated with discordance between patient-defined remission (yes/no) and PRO-defined remission for ulcerative colitis (UC; PRO2: stool frequency, rectal bleeding) and Crohn's disease (CD; PRO-3: average number of liquid stools, abdominal pain, well-being). RESULTS: Among patients with UC, overall concordance was 79% between patient self-report and PRO2-defined remission and 49% between patient self-report and PGA-defined remission. Among patients with CD, overall concordance was 69% between patient self-report and PRO3-defined remission and 54% between patient self-report and PGA-defined remission. Patients in PRO-defined remission were more likely to report active disease if they had IBD <5 years and low health confidence. Patients with PRO-defined active disease were more likely to report remission if they were not using prednisone and had high health confidence. CONCLUSION: Discordance exists between how remission is defined by patients, PRO measures, and PGA

The Reliability of Patient Self-reported Utilization in an Inflammatory Bowel Diseases Learning Health System

Background: Inflammatory bowel disease (IBD) care is beset with substantial practice variation. Learning health systems (LHSs) aim to learn from this variation and improve quality of care by sharing feedback and improvement strategies within the LHS. Obtaining accurate information on outcomes and quality of care is a priority for LHS, which often includes patients' self-reported data. While prior work has shown that patients can accurately report their diagnosis and surgical history, little is known about their ability to self-report recent healthcare utilization, medication use, and vaccination status. Methods: We compared patient self-reported data within the IBD Qorus LHS regarding recent IBD-related emergency department (ED) visits, hospitalizations, computerized tomography (CT) scans, corticosteroid use, opioid use, influenza vaccinations, and pneumococcal vaccinations with electronic health record (EHR) data. Results: We compared 328 patient self-reports to data extracted from the EHR. Sensitivity was moderate-to-high for ED visits, hospitalizations, and CT scans (76%, 87%, and 87%, respectively), sensitivity was lower for medication use with 71% sensitivity for corticosteroid use and only 50% sensitivity for self-reported use of opioids. Vaccinations were reported with high sensitivity, but overall agreement was low as many patients reported vaccinations that were not registered in the EHR. Conclusions: Self-reported IBD-related ED visits, hosp

P-056 Development of a Clinical Care Pathway to Identify and Treat Malnutrition in Patients with Inflammatory Bowel Disease

Background Patients with inflammatory bowel disease (IBD) patients are at increased risk for malnutrition due to multiple factors including chronic inflammation, malabsorption, and food restriction. Malnutrition has been associated with depressed immune function, longer hospitalizations, and increased perioperative complications, and has also been identified as a quality measure in IBD. We have previously demonstrated significant knowledge gaps among gastroenterologists on how to recognize and treat malnutrition. We therefore aimed to develop an evidence-based Nutrition Care Pathway (NCP) to identify and manage malnutrition in IBD. Methods A steering committee made up of gastroenterologists with expertise in IBD, dietician, experts in care pathway development, and representatives from the Crohn\u27s and Colitis Foundation of America (CCFA), drafted goals and a framework for an NCP specific to IBD. These were discussed and refined at a moderated, 2-day in-person workshop that included gastroenterologists, dieticians, patient representatives (AW1), informatics experts, and education and advocacy representatives of the CCFA. The steering committee then further refined the NCP, based on additional review of published literature, societal guidelines and care pathways for nutrition assessment in other chronic diseases. The screening component of the NCP was then tested at 7 university-based and community gastroenterology practices participating in CCFA\u27s Qorus Program, a multicenter learning health system designed to improve quality of care in IBD. In addition to the self-administered screening tool, patients rated the ease of administration, and relevance of nutrition screening to their care. Results The NCP includes 4 stages: (1) malnutrition screening (2) clinical assessment (3) treatment and (4) monitoring/follow-up. The NCP screening stage incorporates the validated Malnutrition Universal Screening Tool (MUST), which patients complete prior to a clinical visit. The MUST stratifies patients as low-, moderate- or high-risk for malnutrition. Low-risk patients are directed to re-screen annually, without proceeding on to further NCP stages. Moderate-risk patients undergo focused clinical assessment by providers and are observed for worsening nutritional status. High-risk patients undergo expanded clinical assessment and are provided gastrointestinal symptom-based treatment by providers, and are also referred to a dietician for nutritional education and enteral/parenteral support. The NCP also includes educational materials for both providers and patients, and guidance on appropriate laboratory testing at relevant stages. A total of 247 patients with IBD have completed the NCP screening component. Of these, 21% reported weight loss of ≥5% in the past 6 months, and 7% had a body mass index (BMI) of \u3c18.5. Overall, 20% of screened patients were found to be at high-risk for malnutrition, 16% at moderate-risk and 64% low-risk. Eighty-six percent of patients responded that it was either very easy or easy to complete the MUST. Conclusions We have developed an evidence-based Nutrition Care Pathway for IBD using multidisciplinary expert and patient input. Screening for malnutrition using the NCP is feasible across a variety of ambulatory gastroenterology practice settings and our early experience demonstrates that over one-third of patients with IBD are at risk for malnutrition. Testing of the assessment, treatment, and follow-up stages is warranted in order to evaluate the impact of the NCP on patient outcomes

op Goals and Concerns Reported by Individuals with Inflammatory Bower Disease at Outpatient Gastroenterology Clinic Visits

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: 1. PMID 1727891

P-043 Feasibility of a Multicenter, Collaborative, Longitudinal, Quality Improvement Learning Health System for Adult IBD Care

Background There is significant variation in processes and outcomes of care for patients with chronic inflammatory bowel diseases (IBD), suggesting poor quality of care. Improved quality of care can be facilitated through patient-centered learning health systems, process improvement methods, and multicenter collaborative models such as the Breakthrough Series (BTS) Collaborative developed at the Institute for Healthcare Improvement (IHI). We piloted a learning health system of clinical practices caring for adults with IBD, and assessed the feasibility of a BTS innovation collaborative focused on improving the delivery of urgent IBD care. Methods Following IHI methodology, a focus topic (Improving delivery of urgent IBD care) was selected, and a charter was drafted for an 18 months BTS collaborative. Experts and faculty (5 physicians, 3 patients, and a quality improvement advisor) identified primary and secondary drivers of urgent IBD care delivery, and a package of “change ideas” were created. Key process and outcome measures were established based on previously published IBD outcome metrics. Improvement teams comprised of a physician, nurse and/or coordinator at each of ten IBD-focused clinical sites (6 university-based, 4 community) attended three 2-days in-person learning sessions marking the beginning, middle, and end of the collaborative. Sites each selected 3 to 5 change ideas most relevant to their settings, and learned quality improvement methods centered on the Model for Improvement. Standardized patient-reported measures were collected during patient-visits, and sites submitted monthly reports detailing their progress. Collaborative-wide coached monthly webinars were held to track and review progress using statistical process control charts, and to facilitate sharing of ideas and best practices. Results Four primary drivers of improving urgent IBD care delivery were identified: (1) Patients are activated, well-informed, and engaged in self-management and care planning (2) Care is available and accessible when needed (3) Care is collaborative, evidence-based, and consistent and (4) Care processes are patient-centered, with the right staff and resources. Nineteen “change ideas” related to these drivers were developed, and each site selected 3 to 5 changes to test. These included reserved “urgent care” ambulatory slots, development of urgent care nurse hotlines, tracking and improving telephone callback time, creation of patient education materials and website enhancements specifically regarding urgent care, telehealth for urgent care, restructuring mid-level provider time to accommodate or triage urgent patients, addition of intravenous hydration capabilities in the clinic, and education of local emergency room physicians. Patient-reported measures were collected at over 5500 discrete patient visits, including data on emergency room utilization, hospitalization, steroid and narcotic use, disease activity, and satisfaction with urgent care experiences. All teams were represented at each learning session, and participation on monthly webinars ranged from 90% to 100%. Conclusions A learning health system for adult IBD care in which clinical teams engage in systematic, collaborative, longitudinal quality improvement efforts is feasible. Process and outcome measures for adult IBD care can be reported by patients, minimizing practice burden for data collection. Efforts to demonstrate the feasibility of expanding the learning health system to varied healthcare settings, use of electronic data capture, electronic health record integration, and use of standardized care pathways are ongoing