Inflammatory Bowel Disease Infusion Therapy Adherence in a Rural Pediatric Population

Laura R Hernandez Garcia; Zainab Shams; Alexa Magner; Katherine Webster; Stephanie Thompson; Pratikkumar P Patel

doi:10.7759/cureus.36753

Inflammatory Bowel Disease Infusion Therapy Adherence in a Rural Pediatric Population

Cureus. 2023 Mar 27;15(3):e36753. doi: 10.7759/cureus.36753. eCollection 2023 Mar.

Authors

Laura R Hernandez Garcia¹, Zainab Shams², Alexa Magner¹, Katherine Webster¹, Stephanie Thompson³, Pratikkumar P Patel⁴

Affiliations

¹ Medical School, West Virginia University School of Medicine, Charleston, USA.
² Medical School, West Virginia School of Osteopathic Medicine, Charleston, USA.
³ Institute of Academic Medicine, Charleston Area Medical Center, Charleston, USA.
⁴ Pediatric Gastroenterology, West Virginia University, Charleston, USA.

Abstract

Introduction: Biologic therapy is often used in patients with inflammatory bowel disease (IBD), which includes Crohn's Disease (CD) and ulcerative colitis (UC). While biologic therapy improves outcomes, it is dependent on strict compliance for optimal benefit. Limited information is available to describe IBD infusion therapy compliance and adherence barriers in a rural, geographically dispersed pediatric population.

Methods: Parents/guardians and patients (aged 0-21 years) with a diagnosis of IBD and scheduled biologic therapy infusions were offered a survey consisting of a mix of multiple-choice and open-ended questions. Surveys were offered via in-person paper format or telephone.

Results: Of the 27 pediatric patients completing the survey, the mean age was 14 years old (SD 3.7 years) with 19 patients having CD and eight patients with UC. The results showed that more than half of the patients (59%) had to reschedule, miss, or delayed their infusion therapy at least once. Therapy compliance was maintained as patients were able to reschedule a new appointment within two weeks. The most common reasons for missing appointments were forgetfulness and school conflicts. Patients wanting to maintain health and avoid flare-ups were reported as key drivers for therapy.

Conclusion: Pediatric patients in rural and geographically disperse areas continue to have long commutes and other barriers to IBD specialty care. Forgetfulness and school activities were reported as barriers to biological therapy adherence. Protective factors including knowledge of therapy health benefits, parental involvement, and staff support can help maintain high adherence rates in this population.

Keywords: barriers to infusions; crohn’s disease; ibd therapy; infusion therapies; pediatric ibd; ulcerative colitis.