Health care transition readiness lags in pediatric EoE, EGE

SAN DIEGO — More than 75% of pediatric patients with eosinophilic esophagitis and eosinophilic gastroenteritis, along with their parents, reported no knowledge of health care transition to adult care, according to a presenter at DDW 2016.

“Transition preparation and readiness assessments should become a priority in patients with EoE and EGE and their parents,” Swathi Eluri, MD, from the University of North Carolina School of Medicine, said in her presentation. “Transition programs that are specific to EoE and EGE need to be developed because these patients require a multidisciplinary team of gastroenterologists, nutritionists and allergists to manage their care and they also require multiple modes of treatment ... which makes this group a little bit different from other patients with chronic health conditions.”

Eluri presented data from a cross-sectional survey of patients and their parents, each group receiving their own survey via the American Partnership for Eosinophilic Disorders and Campaign Urging Research for Eosinophilic Disease websites.

Researchers used the Self-Management and Transition to Adulthood with Rx-Treatment (STARx) questionnaire, which uses a 90-point scoring system to measure heath care transition readiness. Other chronic diseases such as inflammatory bowel disease or lupus range in readiness scores from 43 to 59, Eluri said.

The questions fall into these categories: medication management, provider communication, engagement during appointments, disease knowledge, adult health responsibilities and resource utilization. Overall score and individual scores were tallied in each category.

While 205 patients and 245 parents completed the survey, 50 patients and 123 parents were included in the final analysis after paring down to ages 13 to 25 as the STARx questionnaire is validated in these ages.

Eluri said the most important finding was “the lack of health care transition knowledge that was reported.” She showed that 78% of patients and 76% of parents reported no prior knowledge of heath care transition.

Overall, patient transition readiness score was 30.4 ± 11.3 while parent transition readiness was 35.6 ± 9.7 (P < .01). In medication management and adult health responsibilities, parents scored higher, while in provider communication, engagement during appointments and resource utilization, the patients themselves scored higher.

There were no significant differences in either survey when looking at transition readiness in terms of patient characteristics and provider type.

Patients aged 22 to 25 years had lower readiness scores than those who were age 13 to 15 years (2.8 vs. 4.7, P = .01) though Eluri said the reasons for this were unclear.

All groups preferred the transition from pediatric to adult care occur when patients are at least age 18 years. Patients who were familiar with health care transition preferred age of transition to be 24 years.

Though Eluri acknowledged the limitation of a possible selection bias due to the nature of the survey, she said the readiness scores were still lower than anticipated for a group normally seen as highly motivated with access to resources.

“What we reported here in terms of readiness scores and familiarity may actually be lower in the general EoE and EGE populations,” she said. – by Katrina Altersitz

Reference:

Eluri S, et al. Abstract #37. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego.

Disclosures: Eluri reports no relevant financial disclosures. Please see the DDW disclosure list for all other researchers’ relevant financial disclosures.