As reported in Paediatrics & Child Health, the frequency of pediatric inflammatory bowel disease is on the rise across the globe. The Inflammatory Bowel Disease (IBD) Center at Nicklaus Children’s Hospital was created seven years ago to serve this growing population and quickly became a destination for expert IBD care. Today, the team serves more than 450 pediatric patients, taking a comprehensive approach to these life-altering conditions.
“Many people don’t realize how subspecialized the care is for people with Crohn’s disease and ulcerative colitis,” says Alisa Muñiz Crim, MD, pediatric gastroenterologist, Director of the Division of Gastroenterology, Chief of the Section of Gastroenterology and Medical Director of the Inflammatory Bowel Disease (IBD) Center at Nicklaus Children's Hospital. “I liken it to a patient with a congenital heart condition. You want a patient diagnosed with such a condition to be seen by the best in the state or country. That’s why the IBD Center exists.”
A Look at Our Patient Population
Many of the 450 pediatric patients managed within the IBD Center were diagnosed before their sixth birthday, qualifying these patients as early-onset cases. In fact, Nicklaus Children’s serves one of the largest populations of early-onset pediatric IBD patients in the country. Proper care for this population is critical to their health and quality of life.
Along with this unique subset of patients, Dr. Muñiz Crim notes the geographic anomaly that naturally feeds into Nicklaus Children’s IBD services.
“We have the largest non-Mexican Hispanic IBD population in the entire U.S.,” she says. These patients, she states, “appear to have more severe disease phenotypes and respond differently to standard treatments compared to other populations.”
This produces inherent challenges, as there is little research into optimizing care within the Hispanic population. Ongoing research efforts at Nicklaus Children’s aim to remedy this obstacle by evaluating individual patient-specific microbiomes in hopes of identifying potential novel treatment options or population-specific diets that could assist in managing our patients.
Improving Care Now
While national research continues to better serve the non-Mexican Hispanic population, our IBD Center offers expert care and superior results for children of all ethnicities and backgrounds. Currently, our program meets or exceeds national standards for the two most important benchmarks in IBD care: patients entering and remaining in remission while limiting use of steroid therapy.
Achieving these standards occurs courtesy of a team of dedicated specialists and membership in ImproveCareNow, an organization focused on research, innovation and application of new approaches to IBD care. Nicklaus Children’s submits all pertinent patient data to the ImproveCareNow database and participates in cooperative research through the organization. Since joining ImproveCareNow five years ago, the IBD Center’s success rates have dramatically improved, placing our outcomes on par with other large institutions across the United States.
- Remission. Though a cure remains elusive for IBD, a primary goal of IBD management is moving patients into a state of long-term remission. To date, 85 percent of the 450+ patients who receive care at the IBD Center yearly are in remission. This exceeds ImproveCareNow’s goal of 83 percent remission.
- Steroid-free. Currently, 98.2 percent of IBD patients at Nicklaus Children’s do not take prednisone. Dr. Muñiz Crim states that this outpaces ImproveCareNow standards. “Two decades ago, we had few options to manage IBD,” she says, “and we’ve had tremendous improvements in remission and long-term health since then with the onset in use of biologics.”
To ensure and increase access to biologics, the IBD Center has a specialized authorization and support team. These administrators work with insurance companies to secure coverage on a case-by-case basis to help patients reach remission, sometimes via biologics not presently approved for pediatric use, and Nicklaus Children’s is the only pediatric center within Florida offering access to all available clinical trials for pediatric patients with IBD.
Differentiating Factors
Considering the hospital’s unique patient population, reaching and exceeding ImproveCareNow standards is particularly noteworthy.
“Even our underserved non-Mexican Hispanic population that traditionally doesn’t receive the same level of care is experiencing the same quality outcomes as any other population,” Dr. Muñiz Crim says. “We’re proud of that.”
This pride drives the IBD Center team to seek and fill any gaps in care. As a result, the IBD Center has many differentiating factors that set its services apart and draws patients from the Southeast United States, as well as South and Central America. A few distinctive factors include:
- Clinical trial access. As soon as a novel medical therapy trial opens to the pediatric patient population, we strive to make it available at the IBD Center.
- IBD infusion center. Most IBD centers provide infusion services in the same location as oncological and other infusion patients. Nicklaus Children’s offers an IBD-exclusive infusion center, allowing children to receive therapy alongside others with the same condition. This reduces patient fear and, because the nursing staff is specially trained to care for IBD patients, improves the patient experience.
- Intestinal ultrasound. Nicklaus Children’s is one of four pediatric facilities in the U.S. with an intestinal ultrasound program, a novel technology for evaluating IBD patients through noninvasive means.
- National involvement. In addition to participating in ImproveCareNow, Dr. Muñiz Crim and others engage in the National Scientific Advisory Committee for the Crohn’s & Colitis Foundation and other national organizations. Participation ensures the IBD Center remains at the forefront of advances in IBD care.
“These are some of our most fragile patients,” Dr. Muñiz Crim says. “Their medications weaken their immune system, which puts them at increased risk of hospitalization from the common cold or flu. Having the proper team in place for these patients is critical, and we have that here. We’re proud to be revolutionizing care for this population of patients.”
Could one of your patients benefit from the comprehensive care offered at the Nicklaus Children’s IBD Center? Email a Nicklaus Children’s physician liaison to begin the referral process.