JMIR Publications

ABSTRACT

Background:

Care for children and youth with special healthcare needs (CYSHCN) relied on a network of providers who work to address the medical, behavioral, developmental, educational, family support, social, and economic needs of the child and family. Family-directed, manually created visual depictions of care team composition (i.e. care mapping) and detailed notetaking curated by caregivers (e.g. care binders) have been shown to enhance care coordination (CC) for families of CYSHCN, but are difficult to implement in clinical settings due to lack of integration with electronic health records (EHR) and limited visibility of family generated insights for care providers. Digital health tools are a promising solution to address this. Caremap is an EHR-integrated digital personal health record mobile application designed to integrate the benefits of care mapping and care binders. Currently, there is sparse literature describing end-user participation in the co-design of digital health tools that support care coordination for families of CYSHCN. In this paper, we describe a project that evaluated app usability and proof-of-concept through end-user simulation.

Objective:

The goal of this study was to conduct proof-of-concept of the Caremap app to coordinate care for CYSHCN. Specific aims include 1) to engage end-users in app co-design via app simulation; 2) to evaluate the useability of the app using validated measures; and 3) to explore user perspectives on how to make further improvements to the app using qualitative and quantitative data collection.

Methods:

In partnership with Family Voices, a national advocacy group for families of CYSHCN, caregivers of CYSHCN were recruited and underwent a virtual simulation exercise using Caremap to coordinate care for a simulated case of a child with complex medical and behavioral needs. Caregivers completed a post-simulation questionnaire adapted from two validated surveys: the Pediatric Integrated Care Survey (PICS) and the User Version of the Mobile Application Rating Scale (uMARS). In addition, a key informant interview was conducted with a liaison to Spanish-speaking families of CYSHCN regarding app accessibility for non-English speaking users.

Results:

A Caremap simulation was successfully developed in partnership with families of CYSHCN. 38 families recruited from 19 different states participated in the simulation exercise and completed the survey. Average rating for the adapted PICS survey was 4.1/5 (range: 1-5), and average rating for the adapted uMARS survey was 4/5(range: 1-5). The highest rated app feature was the ability to track progress toward short-term, patient/ family defined care goals.

Conclusions:

Virtual simulation successfully facilitated end-user engagement and feedback on the usability and functionality of a digital health care coordination app for families of CYSHCN. Families who completed simulation with Caremap rated the app highly across several domains for CC. Simulation study results also elucidated key areas for improvement that translated to actionable next steps in application development.