IBD: Improving Outcomes through Planned Care
(From Pediatric Directions, Issue 37)
Inflammatory bowel disease (IBD), which includes Crohn’s disease, ulcerative colitis and indeterminate colitis
, is a chronic condition of
uncontrolled gastrointestinal inflammation. The diagnosis of IBD is made using a combination of blood tests, stool studies, radiographic imaging and endoscopic evaluation (including upper endoscopy, colonoscopy and capsule endoscopy). Management of IBD can be challenging and often requires potent immunosuppressant medications including corticosteroids, immunomodulators, and/or anti-tumor necrosis factor (aTNF) therapies. Patients also frequently require surgical interventions to address complications of their disease, with more than one quarter of patients requiring surgery within 10 years of diagnosis1
. While the physical effects of IBD are well-recognized, the psychological and social effects on these patients are significant and must also be addressed2
Approximately 25 percent of patients with IBD are diagnosed during childhood or adolescence.
Pediatric onset of IBD is known to be particularly aggressive, necessitating prompt diagnosis, appropriate selection of therapy, and reliable implementation of recommended treatment plans. However, research has shown that recommended care is often not provided to patients. In fact, as is the case in adults3, pediatric patients only receive half of the general recommended pediatric care4. Although there is less studied regarding IBD, research suggests that there are also similar deficits in IBD specific care5. These deficiencies are most often the result of insufficient “care delivery systems” rather than a lack of effort or a lack of desire on the part of care providers to “do the right thing.” While research allows for the development of knowledge regarding what should be done (i.e. appropriate tests and therapy), quality improvement (QI) methodology, including planned care, allows for the requisite system redesign that is needed to assure that treatment plans are reliably implemented for all patients so that they receive all recommended care and achieve the best possible outcomes.
The Center for Adolescent and Pediatric Inflammatory Bowel Disease
Nationwide Children’s multidisciplinary team (of physicians, surgeons, psychologists, nurse practitioners, nurses, dieticians, social workers, researchers and quality improvement experts from the Center of Adolescent and Pediatric Inflammatory Bowel Disease
) care for approximately 500 patients with IBD annually. Implementation of an interdisciplinary team approach toward managing these patients has been recognized as a necessary method to provide patients with optimal care and improve outcomes.
Newly diagnosed patients are approached in a standardized fashion. Patients are scheduled for an IBD teaching session where they meet with our IBD nurse specialist for education about their disease. This session provides families an opportunity to learn about the disease and to ask questions in a very open format. Patients and families also meet with our IBD dietician during this IBD teaching session for education about the importance of nutritional health. Our IBD psychologist and social worker can also discuss coping with the new diagnosis with families at this time. After this initial teaching at the time of diagnosis, most patients are followed in the clinic on a monthly basis where their medical therapy is tailored to each individual until their disease is well controlled. Patients are typically followed quarterly after reaching a period of clinical stability.
ImproveCareNow – A National Pediatric IBD Quality Improvement Collaborative
Nationwide Children’s Hospital’s IBD team has been, and continues to be a leader in the multi-center quality improvement (QI) collaborative, ImproveCareNow6
was designed in collaboration with the American Board of Pediatrics (ABP) as a prototype of a model that could be deployed across all pediatric sub-specialties7
. Its mission is to build a sustainable collaborative network where all pediatric gastroenterologists work together in a compelling process of continuous quality improvement, innovation and discovery that will, over the next decade, reduce the morbidity and improve the health and wellbeing of children and adolescents with IBD.
The collaborative includes 30 sites with a total of 3,000 patients and nearly 15,000 patient visits. ImproveCareNow aims to improve the management and care of patients with IBD through the use of quality improvement methodology. Examples of methods taught and used by the collaborative include pre-visit assessment, population management, protocols, data auditing, and self-management tools. These QI methods, particularly population management and pre-visit assessment, promote advances in health care delivery in part through planned care for all patients with IBD. The principles and methodology learned and developed in conjunction with ImproveCareNow have been integrated into the IBD program at Nationwide Children’s Hospital. Likewise, the successful tools and processes developed at Nationwide Children’s have been shared with ImproveCareNow and as a result, have been implemented by other sites across the country.
Quality Improvement at Nationwide Children’s Hospital
Through the use of these quality improvement methods, the Section of Pediatric Gastroenterology at Nationwide Children’s has made dramatic improvements in the care of IBD patients. We have seen improvements in a variety of process and outcome measures, most notably an increase in clinical remission rates of our IBD population from a baseline of approximately 50 percent to almost 80 percent currently, giving our patients one of the highest rates of remission
in the country (See Figure 1 Nationwide Children’s Remission Rates.)
A key factor in the success of the program has been the methods used in the management and approach to the IBD population, which focuses on planned visits and optimizing each clinical encounter.
Planned Care: Pre-visit Assessments and Population Management
Pre-visit assessment is a process of reviewing the clinical history and charts of all patients prior to their clinic visit in order to optimize the clinical encounter. Specifically, before the visit, appropriate medication use and dosage is confirmed, prior laboratory results are reviewed and growth and nutritional status are evaluated. The nutrition team is also notified in advance of patients who will need to be seen, either for a routine annual or semi-annual nutritional evaluation, and/or for specific nutritional concerns. Reminders for health maintenance needs such as flu vaccinations are also provided.
Population management involves the review of groups of selected patients in between clinic visits. Patients may be categorized and selected based on a variety of different risk factors, such as disease activity, growth failure or prolonged use of corticosteroids. Currently, our process involves the identification and review of all patients with moderate or severe disease activity, as these patients may be at increased risk for complications or hospitalization. These challenging patients are reviewed in detail by the IBD team and specific considerations regarding medication choice, dose adjustment, further evaluation, and/or input about frequency of follow-up can be provided.
The Section of Gastroenterology, Hepatology and Nutrition
is working toward implementing planned care for each IBD patient returning to clinic. Complete care requires not only the latest medical and surgical advances, but the psychosocial needs and promotion of self-management skills of patients with chronic disease must also be addressed.
Due in part to the success of the collaborative network, investigators associated with ImproveCareNow, including researchers at Nationwide Children’s Hospital, have been awarded approximately $12 million in federal grant funding to further study how to collect and store clinical information for QI and comparative effectiveness research at the time of a clinical encounter, and how to implement QI techniques into routine clinical practice. As part of this effort, the IBD team at Nationwide Children’s Hospital is leading the effort to develop and implement an automated process of pre-visit assessment and population management which would improve both efficiency and care delivery. If successful, these tools will be shared with IBD programs across the country to improve the care delivery system at each site and to improve outcomes for all patients with IBD.
IBD Case Study
Profile/Evaluation: A 14-year-old female initially presented to the GI center with abdominal pain, weight loss and anemia. Upper endoscopy and colonoscopy were performed revealing significant inflammation of the terminal ileum and colon. These endoscopic findings and the subsequent biopsy results confirmed the diagnosis of Crohn’s disease. She was started on immunosuppressive medications including prednisone and 6-mercaptopurine. (See images for examples of normal and diseased terminal ileum and normal and diseased cecum.)
Treatment Plan: While she made some clinical improvement, she continued to struggle with signs of active disease. Specifically, during pre-visit assessment she was noted to have persistent anemia and nutritional failure. She was scheduled for evaluation by our IBD nutritionist at her subsequent visit, and the anemia and nutritional concerns were brought to the attention of her GI physician. Modification of her treatment plan, including the addition of nutritional supplements, was recommended.
In addition, because of her ongoing active disease, her case was reviewed during the weekly population management meeting. Through this review process, a pattern of medication non-adherence and missed appointments was noted. Evaluation and therapy recommendations, including a detailed discussion of the reasons for poor adherence and a suggested change to infliximab were provided. As a result of these recommendations, subsequent discussion with the family revealed significant psychosocial stressors that were impacting the IBD team’s ability to control her disease. Financial limitations including unreliable transportation and anxiety were directly affecting her clinical care.
The IBD team social worker was able to assist with many of these concerns. Transportation vouchers for the patient and her family were secured when alternate methods of transportation were not available, and the social worker was able to assist them in applying for supplemental insurance. The patient began to work with our IBD psychologist in dealing with her stressors and anxiety. She was also successfully changed to, and was adherent with, infliximab therapy as had been recommended, resulting in sustained clinical remission of her disease.
Outcome: Having the capability to carefully review this patient outside of the busy clinic setting using pre-visit assessment and population management allowed for the rapid identification of clinical concerns. The IBD team social worker was able to analyze the root cause of the patient’s issues, and then appropriate interventions were made that resulted in a substantially better outcome than she might have otherwise experienced. The patient has now successfully advanced to biological therapy with improved control over her disease and has now entered a period of sustained remission.
1. Gupta, N., et al., Risk factors for initial surgery in pediatric patients with Crohn’s disease. Gastroenterology, 2006. 130(4): p. 1069-77.
2. Mackner, L.M., W.V. Crandall, and E.M. Szigethy, Psychosocial functioning in pediatric inflammatory bowel disease. Inflamm Bowel Dis, 2006. 12(3): p. 239-44.
3. McGlynn, E.A., et al., The quality of health care delivered to adults in the United States. N Engl J Med, 2003. 348(26): p. 2635-45.
4. Mangione-Smith, R., et al., The quality of ambulatory care delivered to children in the United States. N Engl J Med, 2007. 357(15): p. 1515-23.
5. Colletti, R.B., et al., Variation in care in pediatric Crohn disease. J Pediatr Gastroenterol Nutr, 2009. 49(3): p. 297-303.
7. Crandall, W., et al., ImproveCareNow: The development of a pediatric inflammatory bowel disease improvement network. Inflamm Bowel Dis. 17(1): p. 450-7.
Brendan M. Boyle, MD, is an attending physician in the Section of Gastroenterology, Hepatology and Nutrition at Nationwide Children’s Hospital and an assistant professor of Clinical Pediatrics at the Ohio State University College of Medicine. His clinical focus spans all of general pediatric gastroenterology, including inflammatory bowel disease. His research interests include inflammatory bowel disease and health care quality improvement.
Amy Donegan, RN, MS, CPNP, is a nurse practitioner in the Section of Gastroenterology, Hepatology and Nutrition at Nationwide Children’s Hospital. She holds bachelors and masters degrees in nursing from The Ohio State University. She is a member of the Association of Pediatric Gastroenterology and Nutrition Nurses. Her clinical focus includes pediatric inflammatory bowel disease and she is an active participant in the ImproveCareNow Quality Improvement collaborative.
Wallace V. Crandall, MD,
is director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease at Nationwide Children’s Hospital and associate professor of Clinical Pediatrics at the Ohio State University College of Medicine. Dr. Crandall is an expert in pediatric inflammatory bowel disease (IBD) and quality improvement. He has a large number of active research projects in IBD, and has published extensively on this topic. An active member of the Crohn’s and Colitis Foundation of America (CCFA), Dr. Crandall has served at both the regional and national levels of CCFA as Chair of the CCFA Chapter Medical Advisory Committee of central Ohio, a Board Member of the Central Ohio Chapter of CCFA, a member of the National Pediatric Education committee and as a member of national CCFA working groups. He serves on the Executive Committee and as the Director of Quality for ImproveCareNow, a national pediatric IBD quality improvement collaborative. He is also Chair of the Inflammatory Bowel Disease Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition and co-chair of their Quality Improvement Task Force. Dr. Crandall is the associate director of the Pediatric Gastroenterology Fellowship Training Program at Nationwide Children’s Hospital, and named nationally on “Best Doctors in America” listing.