Below are an assortment of publications from members of ImproveCareNow. Learn about other ImproveCareNow Presentations & Abstracts.
Real-world effectiveness of ustekinumab and vedolizumab in TNF-exposed pediatric patients with ulcerative colitis
Published March 2024
Vedolizumab (VDZ) and ustekinumab (UST) are second-line treatments in pediatric patients with ulcerative colitis (UC) refractory to antitumor necrosis factor (anti-TNF) therapy. Pediatric studies comparing the effectiveness of these medications are lacking. Using a registry from ImproveCareNow (ICN), a global research network in pediatric inflammatory bowel disease, we compared the effectiveness of UST and VDZ in anti-TNF refractory UC.
Is it “all in the bag?” Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network
Published January 2024
Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.
Diagnosis change in pediatric inflammatory bowel disease
Published January 2024
This study aims to characterize pediatric inflammatory bowel disease (IBD) patients who change diagnosis and describe the characteristics of that change.
Physicians’ Explanatory Models of Pediatric Inflammatory Bowel Disease: A Qualitative Interview Study
Published December 2023
Catalina Berenblum Tobi, Mara Buchbinder
This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children.
Bone health screening practices with dual-energy X-ray absorptiometry and prediction of abnormal results in pediatric inflammatory bowel disease
Published December 2023
Ryan Morrow, Edwin F. de Zoeten, Nina Ma, Camille Chun, Frank I. Scott
Pediatric patients diagnosed with inflammatory bowel disease (IBD) are at risk of suboptimal peak bone mass attainment. This study aimed to understand rates of bone health screening adherence, describe factors associated with dual-energy X-ray absorptiometry (DXA) acquisition, and identify factors associated with abnormal DXA.
Variability of Psychosocial Services Within the ImproveCareNow Learning Health System: Opportunities for Optimization
Published November 2023
Winnick, Joel B. PhD, ABPP; Jacobs, Noel PhD; David, Jennie G. PhD; Moua, Mai Ku MSW; Saeed, Shehzad A. MD, FAAP, AGAF
Known to be significantly disruptive to normative social development and quality of life, pediatric IBD significantly increases the risk of internalizing distress and secondary developmental sequelae. While multidisciplinary support including psychosocial care (from social workers and pediatric psychologists) is growing, this evidence-based and beneficial set of services is not universally available to youth with IBD. In a survey sent to the more than 100 established ICN centers, psychosocial providers attempted to identify the coverage and practice scope of psychosocial providers within the network.
Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks
Published June 2023
Madeleine Huwe, Becky Woolf, Jennie David, Michael Seid, Shehzad Saeed, Peter Margolis
Patient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means—and what successful patient engagement means—are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs.
Pediatric GI Health Care Professionals’ Perceptions of and Engagement With Psychosocial Providers in Pediatric IBD Care
Published April 2023
David, Jennie G. PhD, Sejkora, Ellen PhD, Michel, Hilary K. MD, Mackner, Laura PhD
Multidisciplinary care is recommended for optimal pediatric inflammatory bowel disease (IBD) care, including psychosocial providers (eg, psychologists). However, health care professionals’ (HCPs) perceptions of and engagement with psychosocial providers in pediatric IBD is lacking.
Comparative Effectiveness of Anti-TNF in Combination with Low Dose Methotrexate vs Anti-TNF Monotherapy in Pediatric Crohn's Disease: a Pragmatic Randomized Trial
Published March 2023
Kappelman MD, Wohl DA, Herfarth HH, Firestine AM, Adler J, Ammoury RF, Aronow JE, Bass DM, Bass JA, Benkov K, Berenblum Tobi C, Boccieri ME, Boyle BM, Brinkman WB, Cabera JM, Chun K, Colletti RB, Dodds CM, Dorsey JM, Ebach DR, Entrena E, Forrest CB, Galanko JA, Grunow JE, Gulati AS, Ivanova A, Jester TW, Kaplan JL, Kugathasan S, Kusek ME, Leibowitz IH, Linville TM, Lipstein EA, Margolis PA, Minar P, Molle Rios Z, Moses J, Olano KK, Osaba L, Palomo PJ, Pappa H, Park KT, Pashankar DS, Pitch L, Robinson M, Samson CM, Sandberg KC, Schuchard JR, Seid M, Shelly KA, Steiner SJ, Strople JA, Sullivan JS, Tung J, Wali P, Zikry M, Weinberger M, Saeed SA, Bousvaros A.
Tumor Necrosis Factor inhibitors (TNFi), including infliximab and adalimumab, are a mainstay of pediatric Crohn's disease (PCD) therapy; however, non-response and loss of response is common. As combination therapy with methotrexate may improve response, we performed a multi-center, randomized, double-blind, placebo-controlled pragmatic trial to compare TNFi with oral methotrexate to TNFi monotherapy.
Biosimilars for Pediatric Patients with Inflammatory Bowel Disease: Pediatric Gastroenterology Clinical Practice Survey
Published February 2023
Maltz RM, McClinchie MG, Boyle BM, McNicol M, Morris GA, Crawford EC, Moses J, Kim SC.
The objective of this study was to evaluate the perspectives of pediatric gastroenterologists in the United States (U.S.) towards biosimilar use and to explore factors that impact their comfort level with prescribing infliximab biosimilars.
Use, Durability, and Risks for Discontinuation of Initial and Subsequent Biologics in a Large Pediatric-Onset IBD Cohort
Published February 2023
Kaplan JL, Liu C, King EC, Bass JA, Patel AS, Tung J, Chen S, Lissoos T, Candela N, Saeed S, Colletti RB
Biologic medications are recommended for treatment of moderately-to-severely active Crohn's disease (CD) or ulcerative colitis (UC) in children. However, many patients require sequential biologic treatment because of nonresponse or loss of response to the initial biologic.
Practice Survey: Depression Screening in Pediatric Inflammatory Bowel Disease
Published February 2023
Maddux MH, Drovetta M, Mackner LM, Plevinski J, Whitaker BN
This study summarizes depression screening within IBD centers in the ImproveCareNow Collaborative Network.
Using multiple imputation of real-world data to estimate clinical remission in pediatric inflammatory bowel disease
Published February 2023
Nanhua Zhang, Chunyan Liu, Steven J Steiner, Richard B Colletti, Robert Baldassano, Shiran Chen, Stanley Cohen, Michael D Kappelman, Shehzad Saeed, Laurie S Conklin, Richard Strauss, Sheri Volger, Eileen King, and Kim Hung Lo
To evaluate the performance of the multiple imputation (MI) method for estimating clinical effectiveness in pediatric Crohn's disease in the ImproveCareNow registry; to address the analytical challenge of missing data.
Clinical Outcome Assessments in Pediatric Patients With Ulcerative Colitis and Crohn's Disease Receiving Biologics: A Retrospective Cohort Study
Published March 2022
Hunter T, Komocsar WJ, Liu C, Colletti RB, Steiner SJ, Dotson JL, Benkov K, Zhang N, Crandall W.
To assess disease activity, steroid-free remission, and other clinical outcome assessments among pediatric patients with ulcerative colitis (UC) and Crohn's disease (CD) in the ImproveCareNow (ICN) registry.
Building responsive governance for learning networks
Published April 2022
Porcaro K. Building responsive governance for learning networks. Learn Health Syst. 2021 Aug 5;6(2):e10288. doi: 10.1002/lrh2.10288. PMID: 35434358; PMCID: PMC9006526.
This article describes a strategic governance review of ImproveCareNow (ICN), a learning health network focused on improving clinical outcomes for adolescents with Crohn's disease and ulcerative colitis (IBD). ICN is organized around an "enhanced" patient registry and collaborative community of patients, parents, clinicians, and researchers.
Overweight and obese status is not associated with disease activity for children and adolescents with newly diagnosed IBD
Published April 2022
Jain A, Bricker J, Kappelman MD, Dotson JL; ImproveCareNow Pediatric IBD Learning Health System. Overweight and obese status is not associated with disease activity for children and adolescents with newly diagnosed IBD. Am J Gastroenterol. 2022 Apr 26. doi: 10.14309/ajg.0000000000001803. Epub ahead of print. PMID: 35470288.
The aim of this study was to evaluate disease-related outcomes in overweight and obese children with CD and UC.
Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE): A Series of N-of-1 Diet Trials
Published April 2022
Kaplan HC, Opipari-Arrigan L, Yang J, Schmid CH, Schuler CL, Saeed SA, Braly KL, Chang F, Murphy L, Dodds CM, Nuding M, Liu H, Pilley S, Stone J, Woodward G, Yokois N, Goyal A, Lee D, Yeh AM, Lee P, Gold BD, Molle-Rios Z, Zwiener RJ, Ali S, Chavannes M, Linville T, Patel A, Ayers T, Bassett M, Boyle B, Palomo P, Verstraete S, Dorsey J, Kaplan JL, Steiner SJ, Nguyen K, Burgis J, Suskind DL; ImproveCareNow Pediatric IBD Learning Health System. Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE): A Series of N-of-1 Diet Trials. Am J Gastroenterol. 2022 Apr 20. doi: 10.14309/ajg.0000000000001800. Epub ahead of print. PMID: 35442220.
Evidence about Specific Carbohydrate Diet (SCD) for inflammatory bowel disease (IBD) is limited. We conducted 54 single-subject, double-crossover N-of-1 trials comparing SCD to a modified SCD (MSCD) and comparing each to the participant's baseline, usual diet (UD).
Web-Based Mindfulness-Based Interventions for Well-being: Randomized Comparative Effectiveness Trial
Published September 2022
Sylvia LG, Lunn MR, Obedin-Maliver J, McBurney RN, Nowell WB, Nosheny RL, Mularski RA, Long MD, Merkel PA, Pletcher MJ, Tovey RE, Scalchunes C, Sutphen R, Martin AS, Horn EJ, O'Boyle M, Pitch L, Seid M, Redline S, Greenebaum S, George N, French NJ, Faria CM, Puvanich N, Rabideau DJ, Selvaggi CA, Yu C, Faraone SV, Venkatachalam S, McCall D, Terry SF, Deckersbach T, Nierenberg AA. Web-Based Mindfulness-Based Interventions for Well-being: Randomized Comparative Effectiveness Trial. J Med Internet Res 2022
Mindfulness can improve overall well-being by training individuals to focus on the present moment without judging their thoughts. However, it is unknown how much mindfulness practice and training are necessary to improve well-being.
Provider Knowledge and Recommendations Regarding Ileoanal Pouch Surgery and Fertility in Women with Ulcerative Colitis
Published September 2022
Taylor Boyd, BS, Rachel W Winter, MD, MPH, Harland S Winter, MD, Michele Kissous-Hunt, PA-C, Joel E Goldberg, MD, Thomas Frederick McElrath, MD, PhD, Sonia Friedman, MD
In this study, we aimed to assess health care providers’ general knowledge of the impact of the J-pouch procedure on female fertility.
Treatment and biologic maintenance-dosing patterns among pediatric patients with ulcerative colitis or Crohn's disease
Published November 2022
Hunter T, Komocsar WJ, Colletti RB, Liu C, Benkov KJ, Dotson JL, Steiner SJ, Zhang N, Crandall W; ImproveCareNow Network. Treatment and biologic maintenance-dosing patterns among pediatric patients with ulcerative colitis or Crohn's disease. Curr Med Res Opin. 2022 Nov 7:1-7. doi: 10.1080/03007995.2022.2135836. Epub ahead of print. PMID: 36263735.
To assess treatment patterns and initial and maintenance dosing of biologics over 3 years in pediatric patients with ulcerative colitis (UC) or Crohn's disease (CD), utilizing data from the ImproveCareNow registry.
Interpreting Patient-Reported Outcome Scores: Pediatric Inflammatory Bowel Disease as a Use Case
Published December 2022
Schuchard J, Carle AC, Kappelman MD, Tucker CA, Forrest CB; ImproveCareNow Pediatric IBD Learning Health System and COMBINE study team. Interpreting Patient-Reported Outcome Scores: Pediatric Inflammatory Bowel Disease as a Use Case. Acad Pediatr. 2022 Nov-Dec;22(8):1520-1528. doi: 10.1016/j.acap.2021.12.029. Epub 2022 Jan 5. PMID: 34995822; PMCID: PMC9253201.
To demonstrate how to interpret Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome measure (PROM) scores for patients with pediatric inflammatory bowel disease (IBD).
Sustainable generation of patient‐led resources in a learning health system
Published February 12, 2021
David, J, Berenblum Tobi, C, Kennedy, S, et al. Sustainable generation of patient‐led resources in a learning health system. Learn Health Sys. 2021;e10260. https://doi.org/10.1002/lrh2.10260
This paper, written by patients and providers from ICN, reviews current ICN data on PAC‐generated resources, including creation processes and download statistics.
Clinical Practice Survey of Repeat Endoscopy in Pediatric Inflammatory Bowel Disease in North America
Published February 24, 2021
Moses J, Sandberg K, Winberry G, Riera D, DeLozier S, Gupta SK, Reilly N, Park KT, Picoraro J. Clinical Practice Survey of Repeat Endoscopy in Pediatric Inflammatory Bowel Disease in North America. J Pediatr Gastroenterol Nutr. 2021 Feb 24. doi: 10.1097/MPG.0000000000003100. Epub ahead of print. PMID: 33633082.
Endoscopic remission has become a standard treatment target in inflammatory bowel disease (IBD). It is unclear how widely this practice has been adopted amongst pediatric gastroenterology providers. This study determines the frequency of repeat endoscopy in pediatric IBD and evaluates for predictive baseline characteristics of providers.
Getting what is needed, when it's needed: Sharing information, knowledge, and know-how in a Collaborative Learning Health System
Published May 3, 2021
, , , , . Getting what is needed, when it's needed: Sharing information, knowledge, and know-how in a Collaborative Learning Health System. Learn Health Sys. 2021; 1– 7. https://doi.org/10.1002/lrh2.10268
We describe efforts in ImproveCareNow, a CLHS improving outcomes in pediatric inflammatory bowel disease (IBD), to increase the number of patients and families creating and accessing IKK, and the challenges faced in that process.
Reduced Systemic Corticosteroid Use among Pediatric Patients with Inflammatory Bowel Disease in a Large Learning Health System
Published May 25, 2021
Kandavel, Prashanthi*; Eder, Sally J.†; Adler, Jeremy*,† and the ImproveCareNow Network Pediatric IBD Learning Health System Reduced Systemic Corticosteroid Use among Pediatric Patients with Inflammatory Bowel Disease in a Large Learning Health System, Journal of Pediatric Gastroenterology and Nutrition: May 25, 2021 - Volume - Issue - doi: 10.1097/MPG.0000000000003182https://doi.org/10.1093/ibd/izab154
Assessing the Prevalence of and Risk Factors for Disordered Eating Attitudes and Behaviors in Adolescents With Inflammatory Bowel Disease
Published June 9, 2021
Jennie G David, PhD, Douglas Chute, PhD, Bonney Reed, PhD, Shehzad Saeed, MD, David DeMatteo, JD, PhD, Orhan Atay, MD, Michele Maddux, PhD, Brian Daly, PhD, Assessing the Prevalence of and Risk Factors for Disordered Eating Attitudes and Behaviors in Adolescents With Inflammatory Bowel Disease, Inflammatory Bowel Diseases, 2021;, izab154, https://doi.org/10.1093/ibd/izab154
A science of collaborative learning health systems
Published June 1, 2021
, , . A science of collaborative learning health systems. Learn Health Sys. 2021; 5( 3):e10278. https://doi.org/10.1002/lrh2.10278
Use of Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Measures As Clinical Trial Endpoints: Experience From a Multi-Center Pragmatic Trial in Children With Crohn's Disease
Published November 2, 2021
Miller TL, Schuchard J, Carle AC, Forrest CB, Kappelman MD; COMBINE Study Group. Use of Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Measures As Clinical Trial Endpoints: Experience From a Multi-Center Pragmatic Trial in Children With Crohn's Disease. J Pediatr. 2021 Nov 2:S0022-3476(21)01053-2. doi: 10.1016/j.jpeds.2021.10.053. Epub ahead of print. PMID: 34740588.
Continued statural growth in older adolescents and young adults with Crohn's disease and ulcerative colitis beyond the time of expected growth plate closure
Published January 22, 2020
Gupta N, Liu C, King E, Sylvester F, Lee D, Boyle B, Trauernicht A, Chen S, Colletti R, ImproveCareNow Network . Continued statural growth in older adolescents and young adults with Crohn's disease and ulcerative colitis beyond the time of expected growth plate closure. Inflamm Bowel Dis 2020
Determined the frequency of continued growth and compared the total height gain beyond the time of expected growth plate closure and the chronological age at achievement of final adult height in Crohn's disease (CD) vs ulcerative colitis (UC) and described height velocity curves in inflammatory bowel disease (IBD) compared with children in the National Health and Nutrition Examination Survey (NHANES).
Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn’s disease
Published February 12, 2020
Forrest CB, Forrest KD, Clegg JL, de la Motte A, Amaral S, Grossman AB, Furth SL. Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn’s disease. J Patient Rep Outcomes 2020; 4(1): 11
PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was done to evaluate the content validity of the PROMIS Pediatric Pain Interference and Fatigue measures in children 8–17 years-old with Crohn’s disease and the PROMIS Pediatric Fatigue, Sleep Disturbance, and Sleep-related Impairment measures for children 8–17 years-old with chronic kidney disease.
Measuring engagement in a collaborative learning health system: The case of ImproveCareNow
Published April 6, 2020
, , , , . Measuring engagement in a collaborative learning health system: The case of ImproveCareNow. Learn Health Sys 2020;e10225. https://doi.org/10.1002/lrh2.10225
Collaborative learning health systems have demonstrated improved outcomes for a range of different chronic conditions. Patient and healthcare provider engagement in these systems is thought to be associated with improved outcomes. We have adapted an observational framework to measure, and track over time, engagement in ImproveCareNow, a collaborative learning health system for children with inflammatory bowel disease.
Abdominal Pain After Pediatric Inflammatory Bowel Disease Diagnosis
Published September 8, 2020
Murphy, Lexa K.; Suskind, David L.; Qu, Pingping; Zhou, Chuan,; Gashi, Kaltrina; Kawamura, Joy S.; Palermo, Tonya M.
Although abdominal pain is a hallmark symptom of pediatric inflammatory bowel disease (IBD), limited research has examined pain during the first year after diagnosis. The purpose of this study is to examine prevalence, predictors, and impact of abdominal pain over the 12 months after pediatric IBD diagnosis using data from the ImproveCareNow (ICN) Network.
Organizing for collaboration: An actor-oriented architecture in ImproveCareNow
Published 2020
Seid, Michael; Hartley, David M; Dellal, George; Myers, Sarah; Margolis Peter A;
Collaborative learning health systems (CLHSs) enable patients, clinicians, researchers, and others to collaborate at scale to improve outcomes and generate new knowledge. An organizational framework to facilitate this collaboration is the actor-oriented architecture, composed of (a) actors (people, organizations, and databases) with the values and abilities to self-organize; (b) a commons where they create and share resources; and (c) structures, protocols, and processes that facilitate multiactor collaboration. CLHSs may implement a variety of changes to strengthen the actor-oriented architecture and enable more actors to create and share resources.
The Learning Exchange, a Community Knowledge Commons for Learning Networks: Qualitative Evaluation to Test Acceptability, Feasibility, and Utility
Published March 14, 2019
McLinden D, Myers S, Seid M, Busch M, Davis D, Murphy J . The Learning Exchange, a Community Knowledge Commons for Learning Networks: Qualitative Evaluation to Test Acceptability, Feasibility, and Utility. JMIR Form Res 3 2019;(1): e9859
Learning Networks are distributed learning health systems that enable collaboration at scale to improve health and health care. A key requirement for such networks is having a way to create and share information and knowledge in furtherance of the work of the community. We describe a Learning Exchange—a bespoke, scalable knowledge management and exchange platform initially built and tested for improving pediatric inflammatory bowel disease outcomes in the ImproveCareNow (ICN) Network—and assess evidence of its acceptability, feasibility, and utility in facilitating creation and sharing of information in furtherance of the work of the community and as a model for other communities.
Population Management: A Tool to Improve Timely Care in Pediatric and Young Adult Patients with Inflammatory Bowel Disease
Published July 18, 2019
Prendaj E, Thomas S, Tomer G. Population Management: A Tool to Improve Timely Care in Pediatric and Young Adult Patients with Inflammatory Bowel Disease. Gastroenterology Research and Practice 2019
Maintenance of health leads to better outcomes in patients with chronic illness. ImproveCareNow, an international inflammatory bowel disease (IBD) quality improvement (QI) network, recommends maintenance-of-health visits twice a year. We identified a gap in care, with only 64% of IBD patients having documented visits within 200 days. Therefore, we sought to improve our follow-up rate to a goal of 80%.
Additional Links
Research Explained - on LOOP
Patient-Clinician Collaboration in the Development of an IBD Transfer Toolkit
Published September 2019
Kennedy S, Maddux MH. Patient-Clinician Collaboration in the Development of an IBD Transfer Toolkit. Pediatrics 144 2019;(3)
Within ICN, the Transition Task Force was created in 2014 to identify, test, and measure the impact of quality-improvement tools and strategies related to improving the processes of transition and transfer within the ICN pediatric gastrointestinal centers.* This task force has been led by a pediatric gastroenterologist and a pediatric psychologist (M.H.M.) with expertise in pediatric IBD and is composed of 1 patient with IBD, who is a member of the ICN PAC (S.T.K.); 4 additional pediatric gastroenterologists; 1 ICN quality-improvement coordinator; and a research coordinator.
This project evolved from the shared experiences of PAC members, namely our desire to have a resource that compiles transfer-related information deemed essential by patients. Recognizing the need and importance of transfer planning among young people and adults with IBD, we, as a patient (S.T.K.) and a clinician (M.H.M), partnered with the PAC to develop the Transfer Toolkit.
Learn more about Transitioning to Adult Care and Download the Transfer Toolkit
Depression Screening in Pediatric IBD Clinics: Recommendations and a Toolkit for Implementation
Published September 2019
Mackner LM, Whitaker BN, Maddux MH, Thompson S, Hughes-Reid C, Drovetta M, Reed-Knight B. Depression Screening in Pediatric IBD Clinics: Recommendations and a Toolkit for Implementation. J Pediatr Gastroenterol Nutr 2019
The objective of this article is to establish clinical guidelines for depression screening in youth diagnosed with IBD and to provide resources for implementation. The psychosocial screening task force group comprised of psychologists and social workers in the ImproveCareNow (ICN) learning health system reviewed research and clinical guidelines in other fields, and consulted with physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in ICN. It is recommended that adolescents with IBD ages 12 and older be screened for depression annually. Additional practical recommendations for implementation, triage, and treatment within the pediatric gastroenterology clinic are also provided.
Implementing a Novel Quality Improvement-Based Approach to Data Quality Monitoring and Enhancement in a Multipurpose Clinical Registry
Published September 2019
Pratt J, Jeffers D, King EC, Kappelman MD, Collins J, Margolis P, Baron H, Bass JA, Bassett MD, Beasly GL, Benkov KJ, Bornstein JA, Cabrera JM, Crandall W, Dancel LD, Garin-Laflam MP, Grunow JE, Hirsch BZ, Hoffenberg E, Israel E, Jester TW, Kiparissi F, Lakhole A, Lapsia SP, Minar P, Navarro FA, Neef H, Park KT, Pashankar DS, Patel AS, Pineiro VM, Samson CM, Sandberg KC, Steiner SJ, Strople JA, Sudel B, Sullivan JS, Suskind DL, Uppal V, Wali PD. Implementing a novel quality improvement-based approach to data quality monitoring and enhancement in a multipurpose clinical registry. EGEMS 2019; 7(1): 51
The impact of data quality improvement support to care centers was evaluated using statistical process control methodology. Data quality measures were defined, performance feedback of those measures using statistical process control charts was implemented, and reports that identified data items not following data quality checks were developed to enable centers to monitor and improve the quality of their data.
Evaluating the Comparative Effectiveness of Two Diets in Pediatric Inflammatory Bowel Disease: A Study Protocol for the Series of N-of-1 Trials
Published November 2019
Kaplan HC, Opipari-Arrigan L, Schmid CH, Schuler CL, Saeed S, Braly KL, Burgis JC, Nguyen K, Pilley S, Stone J, Woodward G, Suskind DL. Evaluating the comparative effectiveness of two diets in pediatric inflammatory bowel disease: A study protocol for a series of n-of-1 trials. Healthcare 2019; 7(4): 129
Inflammatory bowel disease (IBD) affects 3 million children and adults in the US. Treatment involves medications with considerable risk profiles. Dietary modification, such as the specific carbohydrate diet (SCD), may be helpful in treating IBD, but there is insufficient evidence of its effectiveness. N-of-1 trials are ideal for addressing this important research question. The Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE) study employs a series of 50 individual N-of-1 trials that compare the SCD to a modified SCD. Treatment periods are assigned in blocks of two, with each patient completing two balanced treatment blocks. Patients are randomized to start with the SCD or modified SCD and alternate between conditions for four eight-week periods. A mobile app guides collecting and viewing data, transitioning diets, and reviewing personal results. Primary outcomes include patient reported outcomes (PROs) of stool frequency, stool consistency, pain interference, and gastrointestinal (GI) symptom severity. We examine changes in inflammation via fecal calprotectin. Participants will receive a personalized answer regarding comparative effectiveness between the SCD and a less restrictive diet option (modified SCD), as well as compared to their baseline diet. We will aggregate the results of completed N-of-1 trials across patients to estimate population level comparative effectiveness of these treatments and the effectiveness of each diet.
Additional Links
Organizing for collaboration: An actor-oriented architecture in ImproveCareNow
Published November 2019
Seid M, Hartley DM, Dellal G, Myers S, Margolis PA. Organizing for collaboration: An actor-oriented architecture in ImproveCareNow. Learning Health Systems 4 2019;(1): e10205
Collaborative learning health systems (CLHSs) enable patients, clinicians, researchers, and others to collaborate at scale to improve outcomes and generate new knowledge. An organizational framework to facilitate this collaboration is the actor‐oriented architecture, composed of (a) actors (people, organizations, and databases) with the values and abilities to self‐organize; (b) a commons where they create and share resources; and (c) structures, protocols, and processes that facilitate multiactor collaboration. CLHSs may implement a variety of changes to strengthen the actor‐oriented architecture and enable more actors to create and share resources.
Networked health care: Rethinking value creation in learning health systems
Published December 2019
Fjeldstad OD, Johnson JK, Margolis PA, Seid M, Hoglund P, Batalden P. Networked health care: Rethinking value creation in learning health care systems. Learning Health Systems 2019
Creating better value in health care service today is very challenging. The social pressure to do so is real for every health care system and its leadership. Real benefit has been achieved in manufacturing sector work by the use of “value-chain” thinking, which assumes that the work is a series of linked processes necessary to make a product. For those activities in health care systems that are similar, this model may be very helpful. Attempts to “install” the value chain widely in health care systems have, however, been frustrating. As a result, well-meaning leaders seeking better value have resorted to programs of cost reduction, rather than service redesign. Professionals have not been very happy or willing participants. The work of health care service invites an expanded model of value creation, one that better matches the work. This paper proposes a networked architecture that can mobilize and integrate the resources of health care professionals, interested patients, family, and other community members in the delivery and improvement of health care systems. It also suggests how this value-creation architecture might contribute to research and the development of new knowledge. Two cases illustrate the proposed architecture and its implications for system design and practice, technology development, and roles and responsibilities of all actors involved in health care systems. We believe that this model better fits the need of making and improving health care services. This expanded understanding of how value is created invites attention by senior leaders, by those attempting to facilitate the improvement of current systems, by patients and clinicians involved in the daily work of health care service coproduction, by those charged with the preparation and formation of future professionals, by those who measure and conduct research in health care services, and by those leading policy, payment, and reimbursement systems.
Co-designing a collaborative chronic care network (C3N) for inflammatory bowel disease: development of methods
Published February 22, 2018
Seid M, Dellal G, Peterson LE, Provost L, Gloor PA, Fore DL, Margolis PA . Co-designing a collaborative chronic care network (C3N) for inflammatory bowel disease: development of methods. JMIR Hum Factors 2018;5(1): e8
Our health care system fails to deliver necessary results, and incremental system improvements will not deliver needed change. Learning health systems (LHSs) are seen as a means to accelerate outcomes, improve care delivery, and further clinical research; yet, few such systems exist. We describe the process of codesigning, with all relevant stakeholders, an approach for creating a collaborative chronic care network (C3N), a peer-produced networked LHS.
"A Guide to Gutsy Living": Patient Driven Development of a Pediatric Ostomy Toolkit
Published May 2018
David J, Jofriet A, Seid M, Margolis PA. "A Guide to Gutsy Living": Patient Driven Development of a Pediatric Ostomy Toolkit. Pediatrics 2018;141(5): e20172789
In this article, patients describe how they harnessed the capacity of a collaborative chronic care network and were supported to develop a psychosocial resource that patients needed.
Additional links
A Guide to Gutsy Living - on LOOP
New Guide helps kids, adolescents living with ostomies
Accuracy of the medication list in the electronic health record-implications for care, research, and improvement
Published May 15, 2018
Walsh KE, Marsolo KA, Davis C, Todd T, Martineau B, Arbaugh C, Verly F, Samson C, Margolis PA . Accuracy of the medication list in the electronic health record-implications for care, research, and improvement. Journal of the American Medical Informatics Association 25 2018;(7): 909-912
Electronic medication lists may be useful in clinical decision support and research, but their accuracy is not well described. The aim of this article was to assess the completeness of the medication list compared to the clinical narrative in the electronic health record.
Improving care in pediatric inflammatory bowel disease
Published December 1, 2018
Egberg M, Kappelman M, Gulati A . Improving care in pediatric inflammatory bowel disease. Gastroenterology Clinics of North America 47 2018;(4): 909-919
This article describes a brief history of health care QI, identifies gaps and challenges in delivery of quality pediatric IBD care, highlights several IBD QI initiatives, and concludes with future directions for improving pediatric IBD outcomes.
Learning health systems as facilitators of precision medicine
Published February 17, 2017
Ramsey L, Mizuno T, Vinks A, Margolis PA. Learning health systems as facilitators of precision medicine. Clinical Pharmacology & Therapeutics 2017; 101(3): 359-367
The concept of the learning health system offers promise to facilitate personalized medicine. In children, serious illness is uncommon, so generating and applying new knowledge therefore requires networks of institutions. To illustrate the concept of the Learning Health System, we describe the example of the ImproveCareNow Network. We then use a network case study to illustrate how the concept of precision medicine can be achieved through a Learning Health System in a real-world clinical environment.
Race differences in initial presentation, early treatment, and 1-year outcomes of pediatric Crohn's disease: results from the ImproveCareNow network
Published May 2017
Dotson JL, Cho M, Bricker J, Kappelman MD, Chisolm DJ, Tomer G, Crandall WV . Race differences in initial presentation, early treatment, and 1-year outcomes of pediatric Crohn's disease: results from the ImproveCareNow network. Inflamm Bowel Dis 2017;23(5): 767-774
Racially disparate care has been shown to contribute to suboptimal health care outcomes for minorities. Using the ImproveCareNow network, we investigated differences in management and outcomes of pediatric patients with Crohn's disease at diagnosis and 1-year post-diagnosis.
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Perianal Crohn's disease in a large multicenter pediatric collaborative
Published May 5, 2017
Adler J, Dong S, Eder S, Dombkowski K . Perianal Crohn's disease in a large multicenter pediatric collaborative. J Pediatr Gastroenterol Nutr 2017;64(5): e117-e124
Although perianal complications of Crohn disease (CD) are commonly encountered in clinical practice, the epidemiology of perianal CD among populations of children is poorly understood. We sought to characterize the prevalence of perianal disease in a large and diverse population of pediatric patients with CD.
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Quality items required for running a paediatric Inflammatory Bowel Disease Centre: an ECCO paper
Published August 1, 2017
Turner D, Carle, A, Steiner S, Margolis PA, Colletti R, Russell RB, Levine A, Kolho K, Ruemmele F, ICN Network . Quality items required for running a paediatric Inflammatory Bowel Disease Centre: an ECCO paper. Journal of Crohn's and Colitis 2017;11(8): 981-987
The importance of a holistic approach with a comprehensive multidisciplinary team, including nutritional and psychosocial support, is becoming well recognised as a key contributor to optimal care in paediatric inflammatory bowel disease [IBD]. The Paediatric committee of ECCO [P-ECCO] aimed to determine important components that would contribute to quality of care in a paediatric IBD centre.
Fistulizing Crohn's Disease Presenting After Surgery on a Perianal Lesian
Singer AA, Gadepalli SK, Eder SJ, Adler J. Fistulizing Crohn's disease presenting after surgery on a perianal lesion. Pediatrics 2016; 137(3)
Perianal skin lesions, such as skin tags, can be an early presenting sign of Crohn’s disease. Surgical intervention on these lesions may increase the risk of fistula development and lead to worse outcomes. This case series examined 8 patients who underwent surgical intervention on what appeared to be benign perianal skin lesions, only to reveal fistulas leading to the diagnosis of Crohn’s disease.
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Improving Clinical Remission Rates in Pediatric Inflammatory Bowel Disease with Previsit Planning
Published July 1, 2016
Savarino JR, Kaplan JL, Winter HS, et al. Improving clinical remission rates in pediatric inflammatory bowel disease with previsit planning. BMJ Quality Improvement Reports 2016; 5(1): 1-5
Inflammatory Bowel Disease (IBD) is a chronic autoimmune inflammatory disease of the intestine which can lead to malnutrition, poor quality of life, and colon cancer. Although there is no cure for the disease, clinical remission is the primary goal. The Center for Inflammatory Bowel Disease at MassGeneral Hospital for Children adopted a Previsit Planning model to identify and discuss symptomatic patients prior to their appointments to identify specific issues that impact disease management.
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Improving pediatric inflammatory bowel disease (IBD) follow-up
Published August 17, 2016
Dykes D, Williams E, Margolis PA, Ruschman J, Bick J, Saeed S, Opipari L. Improving pediatric inflammatory bowel disease (IBD) follow-up. BMJ Quality Improvement Reports 2016; 5(1)
Standardization of Inflammatory Bowel Disease (IBD) care through participation in the ImproveCareNow (ICN) Network has improved outcomes for pediatric patients with IBD, but under the current care model, our improvements have plateaued. Current ICN model care guidelines recommend health supervision visits every six months. We identified a gap in our practice's ability to ensure either a routine six month follow-up or a rapid follow-up after a disease flare, and a significant number of patients with active disease status during a six month period lacked timely reassessment after interventions or medication changes. Telemedicine provides an alternative method of care delivery to address these gaps, but has had limited use in patients with IBD.
Feasibility and validity of the pediatric ulcerative colitis activity index in routine clinical practice
Published February 2015
Dotson JL, Crandall WV, Zhang P, Forrest CB, Bailey CJ, Colletti RB, Kappelman MD. Feasibility and validity of the pediatric ulcerative colitis activity index in routine clinical practice. J Ped Gastroenterol Nutr 2015;60:200-4
The Pediatric Ulcerative Colitis Activity Index (PUCAI) is a noninvasive disease activity index developed as a clinical trial endpoint. More recently, practice guidelines have recommended the use of PUCAI in routine clinical care. We therefore sought to evaluate the feasibility, validity, and responsiveness of PUCAI in a large, diverse collection of pediatric gastroenterology practices.
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A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research
Published August 17, 2015
Marsolo K, Margolis PA, Forrest CB, Colletti RB, Hutton J. A digital architecture for a network-based learning heath system—integrating chronic care management, quality improvement, and research. eGEMs 2015;3:16.
We collaborated with the ImproveCareNow Network to create a proof-of-concept architecture for a network-based Learning Health System. This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a “data in once” strategy. We sought to automate a series of reports that support care improvement while also demonstrating the use of observational registry data for comparative effectiveness research.
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Pilot Development of an Electronic Pediatric Inflammatory Bowel Disease Quiz-Game
Published September 2015
Tung J, Grunow J, Jacobs N. Pilot development of an electronic pediatric inflammatory bowel disease quiz-game. J Ped Gastroenterol Nutr 2015;61:292-6
Data suggest physicians poorly assess disease-specific literacy and transition readiness in pediatric patients with inflammatory bowel disease (IBD). We piloted an electronic, interactive iPad quiz game that could be used in a clinical setting, with the aims of measuring IBD-related knowledge, and concomitant mood and quality of life (QOL) in a pediatric population.
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Co-production of healthcare service
Published September 16, 2015
Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, Hartung H. Co-production of healthcare service. BMJ Quality & Safety 2015; 25(8): 1-9
Efforts to ensure effective participation of patients in healthcare are called by many names-patient centeredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products.
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Engagement, Peer Production, and the Learning Healthcare System
Published March 2014
Seid M, Margolis PA, Opipari-Arrigan L. Engagement, peer production, and the learning healthcare system. JAMA Pediatr 2014;168(3):201-202
Physicians deliver about half of indicated care, and patients do about half of what it takes to stay healthy, despite the best intentions and tireless efforts of both physicians and patients. The learning healthcare system (LHS) has been proposed as a solution.
Implementable strategies and exploratory considerations to reduce costs associated with anti-TNF therapy in inflammatory bowel disease
Published May 2014
Park KT, Crandall WV, Fridge J, Leibowitz IH, Tsou M, Dykes D, Hoffenberg EJ, Kappelman MD, Colletti RB. Implementable strategies and exploratory considerations to reduce costs associated with anti-TNF therapy in inflammatory bowel disease. Inflamm Bowel Dis 2014; 20:946-51
A health care system is needed where care is based on the best available evidence and is delivered reliably, efficiently, and less expensively (best care at lower cost). In gastroenterology, anti-tumor necrosis factor agents represent the most effective medical therapeutic option for patients with moderate-to-severe inflammatory bowel disease (IBD), but are very expensive and account for nearly a quarter of the cost of IBD care, representing a major area of present and future impact in direct health care costs.
Effectiveness of anti-TNF for Crohn’s disease: research in a pediatric learning health system
Published July 2014
Forrest CB, Crandall WV, Bailey LC, Zhang P, Joffe MM, Colletti RB et al. Effectiveness of anti-TNF for Crohn’s disease: research in a pediatric learning health system. Pediatrics 2014; 134:37-44
ImproveCareNow (ICN) is the largest pediatric learning health system in the nation and started as a quality improvement collaborative. To test the feasibility and validity of using ICN data for clinical research, we evaluated the effectiveness of anti-tumor necrosis factor-α (anti-TNFα) agents in the management of pediatric Crohn disease (CD).
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PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network
Published July 2014
Forrest CB, Margolis P, Seid M, Colletti RB. PEDSnet: How a prototype pediatric learning health system is being expanded into a national network. Health Affairs 2014; 33:1171-7
Except for a few conditions, pediatric disorders are rare diseases. Because of this, no single institution has enough patients to generate adequate sample sizes to produce generalizable knowledge.
Seasonality and pediatric inflammatory bowel disease
Published July 2014
Lee GJ, Dotson JL, Kappelman MD, King E, Pratt JE, Colletti RB, Bistrick S, Burkam JL, Crandall WV, the ImproveCareNow Network. Seasonality and pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2014; 59:25-8
Seasonal and geographic variations of inflammatory bowel disease (IBD) exacerbations have been described in adults, with inconsistent findings. We sought to determine whether disease activity in pediatric-onset IBD is associated with a seasonal pattern.
Routine use of tiopurines in maintaining remission in pediatric Crohn's disease
Published July 21, 2014
Boyle BM, Kappelman MD, Colletti RB, Baldassano RN, Milov DE, Crandall WV. Routine use of thiopurines in maintaining remission in pediatric Crohn's disease. World J Gastroenterol 2014; 20:9185-90
The multi-center Pediatric Inflammatory Bowel Disease Network (PIBDNet) cohort study prospectively collected data on thiopurine naïve patients initiating mercaptopurine (6MP) or azathioprine. Patients with a diagnosis of Crohn’s disease (CD) were included in our study upon entering remission as determined by physician global assessment (PGA) within 365 d of initiation of thiopurines.
Use of the emergency department in pediatric inflammatory bowel disease
Published September 2014
Hoffenberg EJ, Park KT, Fridge J, Leibowitz I, Tsou M, Dykes D, Kappelman M, Colletti RB. Use of the emergency department in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2014;59: 324–326
We sought to characterize emergency department (ED) encounters for pediatric inflammatory bowel disease (IBD) to identify areas for prevention.
Implementation of a registry for quality improvement
Published April 19, 2013
Brennan CW, Groves PS, Colletti RB. Implementation of a registry for quality improvement. Proceedings, Academy for Healthcare Improvement 2012 Conference, Advancing the Methods for Healthcare Quality Improvement Research. Implementation Science 2013;8(Suppl 1):S4
Crohns’ Disease and ulcerative colitis, or Inflammatory Bowel Disease (IBD), are rare in the pediatric population. Thus, conducting research centered on improving the quality of pediatric IBD care can be challenging for individual pediatric gastroenterology centers. By pooling data and sharing results across 35 care centers nationally, the ImproveCareNow network provides the opportunity for conducting quality improvement (QI) research aimed at improving care and outcomes for pediatric patients with IBD and their families. The network serves as a platform for innovation and the establishment of evidence-based practices for IBD care.
Exemplar pediatric collaborative improvement networks: Achieving results
Published June 2013
Billett AL, Colletti RB, Mandel KE, Miller M, Muething SE, Sharek PJ, Lannon CM. Exemplar pediatric collaborative improvement networks: Achieving results. Pediatr 2013;131:S196-S203
A number of pediatric collaborative improvement networks have demonstrated improved care and outcomes for children. Regionally, Cincinnati Children's Hospital Medical Center Physician Hospital Organization has sustained key asthma processes, substantially increased the percentage of their asthma population receiving "perfect care," and implemented an innovative pay-for-performance program with a large commercial payor based on asthma performance measures.
Improved Outcomes in a Quality Improvement Collaborative for Pediatric Inflammatory Bowel Disease
Published April 12, 2012
Crandall WV, Margolis PA, Kappelman MD, King EC, Pratt JM, Boyle BM, Duffy LF, Grunow JE, Kim SC, Leibowitz I, Schoen BT, Colletti RB, for the ImproveCareNow Collaborative. Improved outcomes in a quality improvement collaborative for pediatric inflammatory bowel disease. Pediatrics 2012;129:e1030-e1041
There is evidence of significant variation in the care of pediatric patients with ulcerative colitis. Variation in the delivery of effective therapy may reduce the likelihood of favorable outcomes. Quality Improvement (QI) methods aimed at improving systems of care delivery can reduce unwanted variation and improve patient outcomes.
What’s in a name generator? Choosing the right name generators for social network surveys in healthcare quality and safety research
Published July 10, 2012
Burt RS, Meltzer DO, Seid M, Borgert A, Chung JW, Colletti RB, Dellal G, Kahn S, Kaplan H, Peterson L, Margolis P. What’s in a name generator? Choosing the right name generators for social network surveys in healthcare quality and safety research. BMJ Qual Saf 2012;21:992-1000
Interest in the use of social network analysis (SNA) in healthcare research has increased, but there has been little methodological research on how to choose the name generators that are often used to collect primary data on the social connection between individuals for SNA.
Role of gender in the treatment and clinical outcomes of pediatric patients with inflammatory bowel disease
Published December 2012
Lee GJ, Kappelman MD, Boyle B, Colletti RB, King E, Pratt JM, Crandall WV. Role of gender in the treatment and clinical outcomes of pediatric patients with inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2012; 55:701-6
We performed a cross-sectional analysis of children with Crohn disease (CD) and ulcerative colitis (UC) using data from the ImproveCareNow Network collected between May 2007 and May 2010. Clinical remission, disease severity, body mass index (BMI) z scores, normal height velocity, and medication use were analyzed by sex and age.
ImproveCareNow: The Development of a Pediatric Inflammatory Bowel Disease Improvement Network
Published January 17, 2011
Kappelman MD, Crandall WV, Colletti RB, Goudie A, Leibowitz IH, Duffy, Crandall W, Kappelman MD, Colletti RB, Leibowitz I, Grunow JE, Ali S, Baron HI, Berman JH, Boyle B, Cohen S, del Rosario F, Denson LA, Duffy L, Integlia MJ, Kim SC, Milov D, Patel AS, Schoen BT, Walkiewicz D, Margolis P. ImproveCareNow: the development of a pediatric IBD improvement network. Inflamm Bowel Dis 2011;17:450‐7
There is significant variation in diagnostic testing and treatment for inflammatory bowel disease. Quality improvement science methods can help address unwarranted variations in care and outcomes.
Short Pediatric Crohn’s Disease Activity Index for Quality Improvement and Observational Research
Published January 17, 2011
Kappelman MD, Crandall WV, Colletti RB, Goudie A, Leibowitz IH, Duffy L, Milov DE, Kim SC, Schoen BT, Patel AS, Grunow J, Larry E, Fairbrother G, Margolis P, ImproveCareNow Collaborative. Short pediatric Crohn’s disease activity index for quality improvement and observational research. Inflamm Bowel Dis 2011;17:112–117
Practical and objective instruments to assess pediatric Crohn’s disease (CD) activity are required for observational research and quality improvement. The objectives were: 1) to determine the feasibility of completing the Pediatric Crohn’s Disease Activity Index (PCDAI) and the Abbreviated PCDAI (APCDAI); and 2) to create a Short PCDAI by retaining and reweighting the most practical and informative components.
Development of process and outcome measures for improvement: Lessons learned in a quality improvement collaborative for pediatric Inflammatory Bowel Disease
Published March 2011
Crandall WV, Boyle BM, Colletti RB, Margolis PA, Kappelman MD. Development of process and outcome measures for improvement: lessons learned in a quality improvement collaborative for pediatric inflammatory bowel disease. Inflamm Bowel Dis 2011;17:2184–219
The Institute of Medicine's publications, To Err is Human and Crossing the Quality Chasm, publicized the widespread deficits in healthcare quality. The quality of care in inflammatory bowel disease (IBD) has not been comprehensively evaluated, in part due to a lack of well-established IBD measures of quality.
Prevalence and Epidemiology of Overweight and Obesity in Children with Inflammatory Bowel Disease
Published October 17, 2011
Long MD, Crandall W, Leibowitz IH, Duffy L, del Rosario F, Kim SC, Integlia M, Berman J, Grunow J, Colletti RB, Schoen BT, Patel AS, Baron H, Israel E, Russell G, Ali S, Herfarth HH, Martin C, Kappelman MD. Prevalence and epidemiology of overweight and obesity in children with inflammatory bowel disease. Inflamm Bowel Dis 2011;17:2162–2168
Obesity is a significant public health threat to children in the United States. The aims were to: 1) Determine the prevalence of obesity in a multicenter cohort of children with inflammatory bowel disease (IBD); 2) Evaluate whether overweight and obese status is associated with patient demographics or disease characteristics.
Variation in Care in Pediatric Crohn’s Disease
Published September 2009
Colletti, RB, Baldassano RN, Milov DE, Margolis PA, Bousvaros A, Crandall WV, Crissinger KD, D’Amico MA, Day AS, Denson LA, Dubinsky M, Ebach DR, Hoffenberg EJ, Kader HA, Keljo DJ, Leibowitz IH, Mamula P, Pfefferkorn MD, Qureshi MA, for PIBDNet—the Pediatric IBD Network for Research and Improvement. Variation in care in pediatric Crohn’s disease. J Pediatr Gastroenterol Nutr 2009;49:297-303
Variation in medical care can be a barrier to improving clinical outcomes. We aim to describe the variation in care of Crohn disease as provided by a broad sample of pediatric gastroenterologists.