To improve at anything – be it your grade in history class or your best time at the 50-yard dash – you need to know how you’re doing. This can come in the form of a grade or where you finish in a race. Without this type of feedback, you can never be sure if you’re on the right track.
At ImproveCareNow, we want to provide the best pediatric and adolescent IBD care for all of our patients. To make sure that we are on the right track, ImproveCareNow centers receive regular feedback in several key areas related to IBD care. This information helps centers know how well they are reaching their goals and helps them make progress in areas that need improvement. (Click here to see an example of an ImproveCareNow Key Clinical Measures Report.)
In addition, ImproveCareNow centers have access to new tools that allow patients to provide feedback to the individual doctors and nurses who provide their care between visits—they want patients to be activated and ready to participate in their care.
Additionally, with the introduction of automated pre-visit and population management tools, doctors and nurses can be better prepared for visits. They can pinpoint areas that need attention and learn from the care provided by other providers at their center. The more timely the feedback, the sooner our providers can address aspects of your care.
We are excited to provide tools that help your doctors and nurses do a better job helping you achieve improved quality of life and better health!
[Editor's note: This post was contributed by Theresa Todd, MPH, MA. Theresa is the Improvement Coordinator for Gastroenterology at Nationwide Children's Hospital in Columbus, OH and it is her responsibility to help the IBD team with quality improvement goals. Theresa has been part of the Nationwide team since July 2010.]
Imagine knowing that your whole care team sat down a week in advance to review your disease course over the last six months, track down any missing lab results, and troubleshoot with colleagues to figure out why it’s been so tough to keep your disease in remission. Imagine getting a call from the nurse a full week before clinic to ask what has been going on since your last visit and, as a result, the social worker is in clinic and ready to discuss solutions to the issues you are having at school. Imagine the lab having your orders well in advance so that the collection tube that they have to use, but don’t keep stocked, is ready and waiting. This time you don’t have to wait while they run down to the supply room, making you late for school and your parents late for work.
The automated pre-visit planning tools that ImproveCareNow centers are now able to use will help make scenarios just like these a reality. Providers will have detailed summary information about their patients available at their fingertips when they need it…before the visit. They will have a concise, printable tool that can be easily shared with the rest of the care team. Ideally, this tool will be used to guide conversations with parents and patients before they come to clinic so that they can be a part of planning their visit, not just passive participants in it.
The result will be more reliable, proactive and individualized pediatric IBD care.
[editor's note: submitted by Sarah Myers, MPH, RN | Lead Quality Improvement Consultant for the ImproveCareNow Network]
ImproveCareNow Network Director, Dr. Richard Colletti, announced that on Wednesday March 27, the first electronic data transfer was performed successfully. ImproveCareNow data from the Electronic Health Record (Epic) at Vermont Children’s Hospital was successfully transferred electronically to the ImproveCareNow registry (ICN2).
The data had been entered by the pediatric gastroenterologists and nurse practitioners as part of clinic visits using an IBD SmartForm specifically designed to have extractable data elements needed for ICN2. The data was then extracted and transferred to ICN2. Going forward, Vermont will continue to transfer data electronically. Read more about electronic data transfer and the ICN2 registry in an article by Keith Marsolo, PhD – Director of Software Development and Data Warehouse at Cincinnati Children’s Hospital Medical Center.
This is a major milestone in the Network’s plans to enable all ImproveCareNow centers to have electronic data transfer, eliminating the need for manual data entry of numerous data elements, reducing the time and cost of data entry, and improving the completeness and accuracy of the data.
All ImproveCareNow centers who use the Epic IBD SmartForm for data collection can now utilize the electronic data transfer process. The IBD SmartForm is accessible in all Epic systems. The Network is prepared to help all centers using Epic to access, configure and clinically use the IBD SmartForm as soon as possible.
ImproveCareNow is also working with other EHR companies—Cerner and Centricity now, and Allscripts soon—to develop similar forms that will collect extractable data necessary for electronic data transfer to ICN2. These 4 companies serve 80% of the centers in ImproveCareNow.
Thanks and congratulations to Keith Marsolo and the team at Biomedical Informatics at CCHMC for their unflagging commitment and success, and to all who have envisioned and worked to bring this to fruition.
We’ve taken our first step—we are ready and eager to work for and with our care centers as we dash into the future of model IBD care.
Dr. Richard Colletti – Network Director for ImproveCareNow – announced today that an ImproveCareNow study has been accepted for oral presentation at Digestive Diseases Week in May. This is a highly innovative study done in collaboration with the Department of Biostatistics and Epidemiology of the University of Pennsylvania. It is a replication of the REACH study, and the first pediatric comparative effectiveness study of anti-TNF drugs.
Congratulations to Mike Kappelman, Wallace Crandall and the research team. And congratulations and thank you to all of the centers whose data made this study possible. More comparative effectiveness studies are planned.
Here is the abstract:
Kappelman MD, Bailey LC, Crandall WV, Zhang P, King E, Joffe M, Colletti RB, Forrest CB and the ImproveCareNow Network
Real-World Clinical and Comparative Effectiveness of Infliximab in Pediatric Crohn’s Disease
Background and Aims: Clinical trials in pediatric Crohn’s disease (CD) are difficult to recruit for, enroll highly selected subjects, and utilize standardized protocols. Thus, efficacy data from trials may not be generalizable to clinical practice. Studies of real-world clinical effectiveness are needed to fully evaluate evolving therapeutic options. We sought to use data from a multicenter clinical registry (the ImproveCareNow Network, ICN) to evaluate the clinical and comparative effectiveness of anti-TNFα biological therapy in children with moderate to severe CD.
Methods: ICN maintains a registry of medication use and clinical and laboratory data collected during pediatric gastroenterology outpatient IBD encounters (33 centers in this analysis). We identified a cohort of new users of infliximab and adalimumab with characteristics (selection criteria) similar to subjects enrolled in the REACH clinical trial. To evaluate clinical effectiveness, Pediatric Crohn’s Disease Activity Index (PCDAI) scores and corticosteroid use were evaluated at the visit closest to 10 weeks following induction. Missing data were estimated by multiple imputation. Response (PCDAI <30 and decrease by ≥ 15 points), remission (PCDAI < 10), and steroid-free status were determined. To evaluate comparative effectiveness, we performed a trial simulation comparing 6 month outcomes of remission and steroid-free remission, adjusting for disease severity and medication use for the 6 months before the start of the trial, among biologic initiators and non-biologic users, using Cox proportional hazards models and generalized estimating equations.
Results: 192 biologic initiators (53% male, mean age 14.9 years, mean PCDAI 39.7) were included in the analysis. Overall, 80% experienced response, 39% remission, and 33% steroid free status at week 10. Among those on concomitant immunomodulators, 82% experienced response and 48% experienced remission (REACH clinical trial 88% and 59% respectively). In the trial simulation, 198 biologic trials were compared with 1157 non-biologic trials. Biologics were associated with increased remission (hazard ratio 1.5, 95% CI 1.1-2.0) and steroid free remission (hazard ratio 2.0, 95% CI 1.5-2.7), with corresponding number needed to treat (NNT) of 7.8 and 5.3.
Discussion: The real-world clinical effectiveness of anti-TNFα biological therapy observed in a multi-center pediatric IBD network is similar to the efficacy estimates from the REACH clinical trial. Concomitant immunomodulator use is associated with increased effectiveness. Compared with conventional care, biological therapy is more effective at achieving remission, particularly steroid-free remission. The NNT can be used to guide clinical decision making regarding risks and benefits. These findings support the use of the ICN registry for comparative effectiveness research.