Improving the Quality of Care for Adults With Inflammatory Bowel Disease
- Conditions
- Inflammatory Bowel DiseasesCrohn's DiseaseUlcerative Colitis
- Registration Number
- NCT02791854
- Lead Sponsor
- Dartmouth-Hitchcock Medical Center
- Brief Summary
Innovative programs exist that suggest that care for people with chronic conditions is optimized when patients and providers have the information they need at the point of care and over time, to engage in shared planning and execution of treatment goals and care plans. This project aims to build an Inflammatory Bowel Disease Learning Health System, a shared information environment, that highlights collaboration among patients, clinicians and care team members, and researchers; for effective use of data for guiding care, value, improvement, and research.
- Detailed Description
To demonstrate the impact of an Adult Inflammatory Bowel Disease (IBD) Learning Health System approach the study collaborators will design, build, implement, and evaluate in up to 90 IBD care sites the the following four key components of the IBD Learning Health System: 1) a Health Information Technology (HIT) environment that can "feed-forward" Patient Reported Outcomes (PROs) and clinical data to be used at the point of care and integrated into a registry (IBD Plexus); 2) decision-support dashboards for use by patients and clinicians in real time to coproduce care; 3) meaningful reports for patients and clinicians; and 4) multi-stakeholder collaborative networks for improvement and research.
Prior work from Sweden and the US show that successful uptake of the model can offer important benefits. Patients will be able to use web-based tools to monitor their health and manage their care, securely share data with clinicians in a timely manner, visualize outcomes that matter to them, and compare their results to other people. Clinicians will have new information that can improve their ability to track patient outcomes and costs over time; use PRO data to support pre-visit planning, shared decision-making at the point of care, and post-visit monitoring; and receive comparative performance reports to support quality improvement, public reporting, and professional development. Researchers will benefit by having PROs and cost data added to data registries to support clinical, translational, and comparative effectiveness research.
Recruitment & Eligibility
- Status
- ENROLLING_BY_INVITATION
- Sex
- All
- Target Recruitment
- 10000
- 18 years of age or older
- Diagnosis of Crohn's disease or ulcerative colitis or IBD unclassified
- Accept the terms and conditions of Informed Consent and Authorization
- Affiliated with a participating IBD Qorus site
- Inability to provide informed consent
- Study key personnel cannot enroll as a study participant
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Number of patients enrolled annually, up to 5 years count of number of patients consented
- Secondary Outcome Measures
Name Time Method Proportion of patients hospitalized annually, up to 5 years assessed by patient report
Proportion of patients with malnutrition annually, up to 5 years assessed by patient report and labs
Proportion of patients in remission annually, up to 5 years assessed using a validated disease activity scale
Proportion of patients on steroids annually, up to 5 years assessed by patient report
Proportion of patients with anemia annually, up to 5 years assessed by patient report and labs
Proportion of patients admitted into the Emergency Room annually, up to 5 years assessed by patient report
Trial Locations
- Locations (33)
Keck Medical Center at University of Southern California Digestive Health Center (USC/Keck)
🇺🇸Los Angeles, California, United States
Cedars-Sinai Inflammatory Bowel Disease Center
🇺🇸Los Angeles, California, United States
Hoag Digestive Health
🇺🇸Newport Beach, California, United States
UC San Diego Health Inflammatory Bowel Disease Center
🇺🇸San Diego, California, United States
University of Colorado Health
🇺🇸Denver, Colorado, United States
Yale School of Medicine IBD Program
🇺🇸New Haven, Connecticut, United States
MedStar Georgetown University Hospital Center for Inflammatory Bowel Disease
🇺🇸Washington, District of Columbia, United States
Gastro Health LLC
🇺🇸Miami, Florida, United States
University of South Florida
🇺🇸Tampa, Florida, United States
Atlanta Gastroenterology Associates
🇺🇸Atlanta, Georgia, United States
Scroll for more (23 remaining)Keck Medical Center at University of Southern California Digestive Health Center (USC/Keck)🇺🇸Los Angeles, California, United States