JMIR Publications

ABSTRACT

Background:

Type 1 diabetes (T1D) management requires following a complex and constant regimen relying on child/caregiver behaviors, skills, and knowledge. Psychological factors such as diabetes distress (DD), depression, and burnout are pertinent considerations in the treatment of pediatric T1D. Approximately 40% of youth and 61% of caregivers experience DD. Implementation of DD screening as part of clinical best practice is recommended and may facilitate treatment referral, perhaps leading to improved health/wellbeing for youth with T1D and their caregivers. By building on existing institutional infrastructure when available, screening via digital health platforms (applications, or “apps”) may allow for timely screening of, and response to, DD.

Objective:

This work details the creation, implementation, and refinement of a process to screen for DD in youth and their caregivers in the context of routine T1D care using a digital health platform.

Methods:

DD screening was implemented in an outpatient endocrinology clinic over one year as part of a larger screen-to-treat trial for children ages 8-12.99 and their caregivers. Validated measures were sent via digital health platform to be completed prior to the clinic visit. Results were initially reviewed manually; but a digital best practice alert (BPA) was later built to notify staff of elevated scores. Families experiencing DD received resources sent via the digital health platform. For this secondary analysis, child demographics and glycated hemoglobin A1c (A1c) were collected.

Results:

During the screening period, 592 pediatric and 651 caregiver questionnaires were assigned in the digital health platform. Questionnaire completion rates for children and caregivers who attended their clinic visit were 34.1% and 35.2%, respectively. A total of 21 children (mean A1c= 8.04±1.39%) and 26 caregivers (child mA1c=8.04±1.72%) reported DD. Prior to BPA development, resources were sent to all but one family. After BPA implementation, all families were sent resources.

Conclusions:

Early findings indicate that DD education, screening, and response can be integrated via digital platforms in a freestanding outpatient endocrinology clinic, thereby facilitating timely treatment referral and provision of resources for those identified with distress. Notably, in the observed one-year screening period, screening rates were low and barriers to implementation were identified. While some implementation challenges were iteratively addressed, there is a need for future quality improvement initiatives to improve screening rates and the identification of/response to DD in our pediatric patients and their families.