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INTRODUCTION:The collection of patient-reported outcomes (PROs) in routine clinical practice provides opportunities to “feed-forward” the patient’s perspective to his/her clinical team to inform planning and management. This data can also be aggregated to “feedback” population-level analytics that can inform treatment decision-making, predictive modeling, population-based care, and system-level quality improvement efforts. METHODS AIDING INTERPRETATION AND ACTING ON RESULTS:Three case studies demonstrate a number of system-level features which aid effective PRO interpretation(1) feed-forward and feedback information flows; (2) score interpretation aids; (3) cascading measurement; (4) registry-enabled learning health care systems; and (5) the maturational development of information systems. DISCUSSION:The case studies describe the developmental span of feed-forward PRO programs—from simple to mature applications. The Concord Hospital (CH) Multiple Sclerosis Neurobehavioral Clinic exemplifies a simple application in which PRO data are used before and during clinic visits by patients and clinicians to inform care. The Dartmouth-Hitchcock (D-H) Spine Center exemplifies a mature program which utilizes population-level analytics to provide decision support by predicting outcomes for different treatment options. The Swedish Rheumatology Quality (SRQ) Registry epitomizes an exceptional application which has spread to multiple systems across an entire country. KEY POINTS:Feed-forward and feedback PRO information systems can better inform, involve, and support clinicians, patients and families, and allow health systems to monitor and improve system performance and population health outcomes. Ideal systems have the capability for multilevel analyses at patient, system, and population levels, and an information technology infrastructure that is linked to associated workflows and a supportive practice culture. As systems mature, they progress beyond the ability to describe and inform towards higher level capabilities including prediction and decision support. Finally, there is additional promise for the integration of patient-reported information that is adjusted (or weighted) by preferences and values to guide shared decision-making and inform individualized precision health care in the future.

Introduction The Learning and Leadership Collaborative (LLC) supports cystic fibrosis (CF) centres’ responses to the variation in CF outcomes in the USA. Between 2002 and 2013, the Cystic Fibrosis Foundation (CFF) designed, tested and modified the LLC to guide front line staff efforts in these efforts. This paper describes the CFF LLC evolution and essential elements that have facilitated increased improvement capability of CF centres and improved CF outcomes. Methods CF centre improvement teams across the USA have participated in 11 LLCs of 12 months’ duration since 2002. Based on the Dartmouth Microsystem Improvement Curriculum, the original LLC included face to face meetings, an email listserv, conference calls and completion of between learning session task books. The LLCs evolved over time to include internet based learning, an electronic repository of improvement resources and examples, change ideas driven by evidence based clinical practice guidelines, benchmarking site visits, an applied QI measurement curriculum and team coaching. Results Over 90% of the CF centres in the USA have participated in the LLCs and have increased their improvement capabilities. Ten essential elements were identified as contributors to the successful LLCs: LLC national leadership and coordination, local leadership, people with CF and families involvement, registry data transparency, standardised improvement curriculum with evidence based change ideas, internet resources with reminders, team coaching, regular progress reporting and tracking, benchmarking site visits and applied improvement measurement. Conclusions The LLCs have contributed to improved medical and process outcomes over the past 10 years. Ten essential elements of the LLCs may benefit improvement efforts in other chronic care populations and health systems.

Abstract 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). Rates of ‘intention to treat-to-target’ over 12 months in a learning health system Changes in rates of achieving endoscopic remission in sites with vs. without improvement in “intention to treat-to-target” over 12 months. (boxed number refers to site number) 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.

Abstract Background We aimed to examine the associations between health confidence (one’s belief on the degree of control on their health and disease), inflammatory bowel disease (IBD) outcomes, and health care utilization among adults with IBD. Methods In total, 17,205 surveys were analyzed from a cross-sectional sample of IBD patients at 23 gastroenterology (GI) practices participating in the Crohn’s and Colitis Foundations’ IBD Qorus Learning Health System. We used bivariate analyses and multivariable logistic regression to examine associations between health confidence and disease activity, opioid use, glucocorticoid use, well-being, and health care utilization. We used receiver operating curve analysis to determine a clinically relevant cutoff for health confidence (0-10 Likert scale). Results Health confidence was highly correlated with patients’ well-being, symptomatic disease activity, opioid use, and glucocorticoid use (all P < .0001). Health confidence scores <8 had 69% sensitivity for emergency department (ED) visits and 66% for hospitalizations. In patients with inactive disease, patients with low health confidence (<8) were 10 times more likely to call/message the GI office >4 times/month (adjusted odds ratio [aOR], 10.3; 95% CI, 6.1-17.3; P < .0001), 3-4 times more likely to have an IBD-related ED visit (aOR, 4.0; 95% CI, 2.9, 5.4. P < .0001), or hospitalization (aOR, 3.0, 95% CI, 2.1, 4.1, P < .0001) compared with patients with high health confidence (≥8). Conclusions In a large, national sample of adults with IBD, there were strong associations between patients’ health confidence and multiple disease outcome measures. Health confidence scores <8 on a 0-10 Likert scale may be clinically useful to screen for patients who are at risk for ED visits and hospitalizations. Low health confidence is highly correlated with more health care utilization (ambulatory and acute hospital-based care), worse disease activity, more opioid and glucocorticoid use, and poorer well-being in a large, nationwide sample of adults with inflammatory bowel disease (IBD) in diverse settings.

There is significant variation in processes and outcomes of care for patients with inflammatory bowel disease (IBD), suggesting opportunities to improve quality of care. We aimed to determine whether a structured quality of care program can improve IBD outcomes, including the need for unplanned health care utilization. We used a structured approach to improve adult IBD care in 27 community-based gastroenterology practices and academic medical centers. Patient-reported outcomes (PRO) and health care utilization were collected at clinical visits. Outcomes were monitored monthly using statistical process control charts; improvement was defined by special cause (nonrandom) variation over time. Multivariable logistic regression was applied to patient-level data. Nineteen process changes were offered to improve unplanned health care utilization. Ten outcomes were assessed, including disease activity, remission status, urgent care need, recent emergency department use, hospitalizations, computed tomography scans, health confidence, corticosteroid or opioid use, and clinic phone calls. We collected data prospectively from 20,382 discrete IBD visits. During the 15-month project period, improvement was noted across multiple measures, including need for urgent care, hospitalization, steroid use, and opioid utilization. Adjusted multivariable modeling showed significant improvements over time across multiple outcomes including urgent care need, health confidence, emergency department utilization, hospitalization, corticosteroid use, and opioid use. Attendance at monthly coached webinars was associated with improvement. Outcomes of IBD care were improved using a structured quality improvement program that facilitates small process changes, sharing of best practices, and ongoing feedback. Spread of these interventions may facilitate broad improvement in IBD care when applied to a large population.

IntroductionCoproduction introduces a fundamental shift in how healthcare service is conceptualised. The mechanistic idea of healthcare being a ‘product’ generated by the healthcare system and delivered to patients is replaced by that of a service co-created by the healthcare system and the users of healthcare services. Fjeldstad et al offer an approach for conceptualising value creation in complex service contexts that we believe is applicable to coproduction of healthcare service. We have adapted Fjeldstad’s value creation model based on a detailed case study of a renal haemodialysis service in Jonkoping, Sweden, which demonstrates coproduction characteristics and key elements of Fjeldstad’s model.Methods and analysisWe propose a five-part coproduction value creation model for healthcare service: (1) value chain, characterised by a standardised set of processes that serve a commonly occurring need; (2) value shop, which offers a customised response for unique cases; (3) a facilitated value network, which involves groups of individuals struggling with similar challenges; (4) interconnection between shop, chain and network elements and (5) leadership. We will seek to articulate and assess the value creation model through the work of a community of practice comprised of a diverse international workgroup with representation from executive, financial and clinical leaders as well as other key stakeholders from multiple health systems. We then will conduct pilot studies of a qualitative self-assessment process in participating health systems, and ultimately develop and test quantitative measures for assessing coproduction value creation.Ethics and disseminationThis study has been approved by the Dartmouth-Hitchcock Health Institutional Review Board (D-HH IRB) as a minimal risk research study. Findings and scholarship will be disseminated broadly through continuous engagement with health system stakeholders, national and international academic presentations and publications and an internet-based electronic platform for publicly accessible study information.

Abstract Background The IBD Qorus Collaborative aims to reduce variation and increase the value of care for the adult inflammatory bowel disease (IBD) community. To evaluate the success of the collaborative, we aimed to develop a balanced set of outcome measures that reflect a multistakeholder view of value in IBD care. To achieve this, we used the Clinical Value Compass framework and engaged a mixed-stakeholder group to conduct a modified Delphi process. The end result was a 10-measure set to assess the value of IBD care. Method The modified Delphi process included 3 iterative rounds of blinded voting and interactive webinar-style discussion. We recruited 18 participants for the Delphi panel, including clinicians, researchers, patients, Crohn’s & Colitis Foundation staff, and payers. Participants first identified constructs to measure, then identified the tools to measure those constructs. A literature review and environmental scan of current measures in 4 domains were performed, and relevant measures were proposed for discussion and voting in each domain. Throughout the process, participants were invited to contribute additional measures. Conclusion The modified Delphi process led to selection of 10 value measures across 4 domains: (1) patient experience; (2) functional status; (3) clinical status; and (4) health care costs and utilization. We have successfully completed a 3-stage modified Delphi process to develop a balanced set of value measures for adult IBD care. The value measure set expands upon prior efforts that have established quality measures for IBD care by adding cost and experience of care elements. This work positions IBD Qorus to better assess, study, improve, and demonstrate value at individual, system, and population levels and will inform and empower related research, improvement, and implementation efforts.

Lay Summary Health confidence—an individual’s belief in their ability and agency to affect disease outcomes—has bidirectional temporal correlations with inflammatory bowel disease activity. Low health confidence is associated with higher risks for future disease activity, and inflammatory bowel disease flares erode confidence.

Abstract 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 <8 vs ≥8) and adverse IBD outcomes. P<.05 was considered statistically significant. 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 <8; n=197, 60%) were more likely to have active IBD (p<.0001), use opioids (p=.0001), and have had an ED visit in the preceding 6 months (p=.04; Table 1). Notably, in the subsequent 6-12 months, patients with low baseline health confidence were more likely to have a CT scan (87% vs 13%, p=.03) and be on opioids (100% vs 0%, p=0.02) (Table 2). A higher proportion of patients with low baseline health confidence used steroids (91% vs 9%), had an ED visit (88% vs 11%), and were hospitalized (91% vs 9%) 6-12 months thereafter, though these differences did not reach statistical significance (Table 2). 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 The burden of disease for persons with multiple sclerosis (MS) and society is changing due to new treatments. Knowledge about the total need for care is necessary in relation to changing needs and new service models. Objective The aim of this study was to describe the contact patterns for MS patients, calculate costs in health care, and create meaningful subgroups to analyze contact patterns. Methods All patients diagnosed with MS at Ryhov Hospital were included. All contacts in the region from January 1, 2018, until September 30, 2019, were retrieved from the hospital administrative system. Data about age, sex, contacts, and diagnosis were registered. The cost was calculated using case costing, and costs for prescriptions were calculated from medical files. Results During the 21‐month period, patients (n = 305) had 9628 contacts and 7471 physical visits, with a total cost of $7,766,109. Seventeen percent of the patients accounted for 48% of the visits. The median annual cost was $7386 in the group with 10 or fewer visits, compared to $22,491 in patients with more than 50 visits. Conclusion There are considerable differences in the utilization of care and cost between patients with MS in an unselected population, meaning that the care needs to be better customized to each patient's demands. There are considerable differences in care utilization and cost between patients with multiple sclerosis in an unselected population. Less than one‐fifth of the patients had half of the total number of visits, whereas one‐third accounted for 48% of the costs. The median cost was three times higher in the group with more than 50 visits than in the group with less than 11 visits. Our data suggest that the care needs to be better customized to each patient's demands.