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. 2024 Oct 1:7:e51606.
doi: 10.2196/51606.

Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach

Ariane Marelli  1   2 , Ronen Rozenblum  3 , Clara Bolster-Foucault  4 , Alicia Via-Dufresne Ley  2 , Noemie Maynard  5 , Khush Amaria  6 , Barb Galuppi  7 , Sonya Strohm  7 , Linda Nguyen  8 , Claire Dawe-McCord  9 , Connie Putterman  10 , Adrienne H Kovacs  11 , Jan Willem Gorter  7   8
Affiliations

Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach

Ariane Marelli et al. JMIR Pediatr Parent. .

Abstract

Background: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients.

Objective: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.

Methods: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders.

Results: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget.

Conclusions: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application.

Trial registration: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.

Keywords: health IT; health care transition; mobile app; mobile phone; patient engagement; patient-centered care.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Description of agile iterative methodology. The figure provides a visual illustration of the agile iterative methodology applied to the life cycle of concept, app, and content development. URS: user requirement specification.
Figure 2
Figure 2
Interface development showing progress from descriptions to wireframes to final version. The figure illustrates the interface developmental process. All the design elements (buildings, rooms, objects, mentor, and accessories); logo; and the content (mentor messages, videos, and challenges) followed this developmental 4-step process. URS: user requirement specification.
Figure 3
Figure 3
Description of technology readiness levels. The figure defines technology readiness levels used to predict the process from innovation concept to commercialization. HIT: health information technology. The left panel of the figure (Technology Readiness Levels) is a copy of the version available at https://buyandsell.gc.ca/initiatives-and-programs/build-in-canada-innovation-program-bcip/program-specifics/technology-readiness-levels.
Figure 4
Figure 4
Illustration of the stakeholder engagement process and activities. HIT: health information technology; PFAC: patient and family advisory council.
Figure 5
Figure 5
Content scheme and session environment. Content scheme and session environment as user advances through the “Journey in the City,” an internet-based environment that reinforces learning through gamification. In the app, the user navigates through a simulated city (“My City”) by engaging with a series of internet-based buildings, each containing a thematic educational session. The user’s navigation is based in "the lounge," which acts as the starting point for each session.
Figure 6
Figure 6
Workflow and recursive structure of educational sessions. The sessions have a recursive structure, and their predicable nature is intended to facilitate navigation through the content. Each session begins at the same location and guides the user to a new location to access the main content and activity of that session. The sessions conclude by guiding the user back to the start location while providing a summary of the key concepts learned and an opportunity to collect a reward.
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References

    1. Blair E, Langdon K, McIntyre S, Lawrence D, Watson L. Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index. BMC Neurol. 2019 Jun 04;19(1):111. doi: 10.1186/s12883-019-1343-1. https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-019-1343-1 10.1186/s12883-019-1343-1 - DOI - DOI - PMC - PubMed
    1. Shin M, Kucik JE, Siffel C, Lu C, Shaw GM, Canfield MA, Correa A. Improved survival among children with spina bifida in the United States. J Pediatr. 2012 Dec;161(6):1132–7. doi: 10.1016/j.jpeds.2012.05.040. https://europepmc.org/abstract/MED/22727874 S0022-3476(12)00557-4 - DOI - PMC - PubMed
    1. Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil. 2007 Aug;88(8):1064–73. doi: 10.1016/j.apmr.2007.04.018.S0003-9993(07)00325-5 - DOI - PubMed
    1. American Academy of Pediatrics. American Academy of Family Physicians. American College of Physicians-American Society of Internal Medicine A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002 Dec;110(6 Pt 2):1304–6. - PubMed
    1. Mackie AS, Fournier A, Swan L, Marelli AJ, Kovacs AH. Transition and transfer from pediatric to adult congenital heart disease care in Canada: call for strategic implementation. Can J Cardiol. 2019 Dec;35(12):1640–51. doi: 10.1016/j.cjca.2019.08.014.S0828-282X(19)31161-4 - DOI - PubMed

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