Experts propose quality components for pediatric IBD centers

Last Updated: 2017-03-24

By Joan Stephenson

NEW YORK (Reuters Health) - A list of 60 items that are important components for centers that treat pediatric inflammatory bowel disease (IBD), based on the opinions of more than 100 experts, may help pediatric IBD centers identify gaps they can address to improve patient care, according to recent findings.

Pediatric-onset IBD is much less common than adult-onset disease and has specific age-related considerations, such as growth, nutrition, psychosocial concerns, and other issues, first author Dan Turner, head of pediatric gastroenterology at Shaare Zedek Medical Centre in Jerusalem, Israel, told Reuters Health in a telephone interview.

Optimal management requires a multidisciplinary team, including nutritional and psychosocial support, to address potential age-related complications and to oversee treatment that includes a range of interventions, including immune-suppressive therapies and surgery.

However, management of pediatric IBD patients in day-to-day clinical practice falls short of recommendations in international guidelines, the authors said.

To identify quality components that pediatric IBD referral centers may wish to incorporate to improve patient care, the pediatric committee of the European Crohn’s and Colitis Organization used the Delphi process to compile expert opinions on quality items and surveyed specialized pediatric IBD centers on how many of these centers have incorporated the items in practice.

Committee members overseeing the effort generated a list of possible quality items based on experience and the published literature and asked 111 pediatric IBD experts to suggest additional items. Through an iterative process, the group graded and ranked the items according to their perceived relative importance to delivering quality care.

The effort resulted in a list of 60 items grouped into six domains, including facilities, personnel, management, supportive services, patient support and accessibility, and academia and communications, the authors reported in the Journal of Crohn’s and Colitis, online March 10.

Examples of top-ranked items that a pediatric IBD center should have include patient volume (treating at least 10 new IBD children per year or 50 at any given time), access to and regular use of fecal inflammatory markers, having at least one physician who is updated in current literature who leads the IBD care, and access to pediatric surgeons, an endoscopist with advanced skills, a dietician experienced in pediatric IBD, and a dedicated IBD nurse.

“It sets a bar,” Dr. Turner noted. “Not everyone will necessarily need to achieve all of the items, but it’s the first step toward standardizing and getting the centers in better shape.”

A survey the researchers sent to 101 high-performing pediatric IBD centers in Europe and North America indicated that 52 of the 60 quality items (87%) were available at most of these centers.

“However, our results may not be generalized to smaller community centers,” the authors noted.

In some cases, items highly ranked by the Delphi process were not available even at most of the 101 high-performing centers.

“The Delphi group decided that having a dedicated IBD nurse is important, yet half the centers did not have an IBD nurse,” Dr. Turner said. Studies suggest that the availability of an IBD nurse may improve patient outcomes, such as quality of life and reduced hospital admissions.

Some of the other items that were unavailable at half or more of the surveyed European or U.S. centers included a dedicated stand-alone weekly pediatric IBD clinic, a 24/7 helpline, support programs for children and their families, and access to bowel ultrasound.

The finding that many of the leading centers surveyed lacked many of the items “points to a gap in resources that may need to be addressed on an individual level,” the researchers wrote.

There was a trend toward increased availability of the other 8 items at centers that saw greater numbers of pediatric IBD patients (more than 300) compared with smaller ones (fewer than 100).

The report is “an important contribution” that highlights the value of having a multidisciplinary group of clinicians, including gastroenterologists, pathologists, nurses, social workers, psychologists, and dietitians, with a focus on IBD evaluation and care, Dr. Athos Bousvaros, associate director of the Inflammatory Bowel Disease Center at Boston Children’s Hospital, told Reuters Health by email.

“The article cannot clearly identify which of 60 features listed by experts are most important, or most important to patient well-being,” said Dr. Bousvaros, who was not involved in the work.

“However, for those of us caring for children with IBD, the article is an important reference to identify deficiencies in our own center and institute quality-improvement initiatives,” he said.

SOURCE: http://bit.ly/2o5RzDU

J Crohns Colitis 2017.