By Will Boggs MD
NEW YORK (Reuters Health) - 6/5/2019
"Self-management/transition of care education is needed earlier than some physicians may think, and is vital to ensuring a patient's success in navigating the adult medical care setting and being able to advocate and problem solve for themselves," Erin Holbrook from Cincinnati Children's Hospital Medical Center, in Ohio, and Dr. Wendy N. Gray from Cincinnati Children's and Children's Hospital of Orange County, in California, told Reuters Health in a joint email.
Transition readiness in adolescents with IBD is suboptimal, the two researchers and their colleagues note in the Journal of Pediatric Gastroenterology and Nutrition, online April 1.
Evidence indicates that transfer to adult IBD care is associated with poor adherence to medication, decreased attendance at clinic and flares in disease activity, they add.
The team presents preliminary data from a single face-to-face transition coordinator-led intervention aimed at improving transition of adolescents (aged 16 years and older) from a pediatric IBD specialty clinic to adult care.
The transition coordinator assessed transition readiness with the Transition Readiness Assessment Questionnaire (TRAQ) and used that information, along with an IBD Self-Management Handbook, to provide customized education on self-management and the transition of responsibility from parent to patient.
The review included 135 adolescents seen by the IBD transition coordinator and 18 adolescent controls not seen by the transition coordinator.
Mean transition readiness increased significantly from 68.13 (on a 100-point scale) at baseline to 74.38 after the intervention (P<0.001).
Participants reported mastering a mean 7.07 out of 20 skills on the TRAQ before the intervention and a significantly higher 8.20 postintervention.
In the control group, there was no significant change in overall transition readiness or self-management skill acquisition.
Out of 182 patients transferred to adult care after the intervention, only three have "bounced back" to pediatrics, all for insurance-related issues.
Following implementation of this program, the percentage of patients still in pediatric care over age 21 decreased by 33.07%, and the percentage of patients in remission significantly increased. Patients who did not receive the intervention showed no significant change in remission rates.
"Transition is all about preparing patients for lifelong independent disease management," Holbrook and Dr. Gray said. "The goal is to start this process early so that patients acquire disease management skills over time and have time to master these skills while they still have the support of their pediatric provider and their parents."
"A social worker/transition coordinator is a needed position to facilitate this program," they said. "There are psychosocial issues and barriers that are discovered during the self-management assessment and goal setting process that require a social worker's clinical skills and scope of practice."
"We've interviewed patients and parents who have previously transferred to adult care, and one of the biggest pieces of advice they have given us is not to wait until the patient is 18 or 21 to have these discussions," they added. "Make it a regular part of patient care. That communicates the importance of this topic and gives families guidelines on how to best support their adolescent. Our results show that even one intervention where transition is discussed has the potential to make an impact."
"We recognize that our model may not be feasible for all pediatric IBD centers and clinics," the team writes. "However, we hope that the presentation of our data will serve as a call to action for new lines of research examining outcomes of different clinic-based models to improve transition to adult care in pediatric IBD."
J Pediatr Gastroenterol Nutr 2019.