iManageSCD

Name: iManageSCD
Author: Children's Hospital of Philadelphia

Children's Hospital of Philadelphia

DOCUMENTED

Published in academic literature

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App Summary

iManageSCD is a self-management mobile health application for adolescents and young adults with sickle cell disease (SCD), designed to support them during the transition from pediatric to adult healthcare. The app's person-centered design was guided by the Social-ecological Model of Transition Readiness and developed with qualitative input from a multidisciplinary team (N=16) including patients, parents, and clinicians. The authors conclude that this user-centered process resulted in a feasible and acceptable tool, which is being prepared for evaluation in a larger clinical study.

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Detailed Description

Functionality & Mechanism

iManageSCD is a mobile health application designed to deliver self-management education and support to adolescents and young adults with sickle cell disease. Developed through a collaborative, user-centered process involving patients, clinicians, and researchers, the system provides resources on disease management, potential triggers, and healthy living strategies. The interface is engineered to support the critical transition period from pediatric to adult healthcare, integrating principles from the Social-ecological Model of Adolescent and Young Adult Readiness to Transition.

Evidence & Research Context

The app's design is detailed in a development paper outlining a process guided by the Integrate, Design, Assess, Share (IDEAS) framework.
Its architecture is grounded in the Social-ecological Model of Adolescent and Young Adult Readiness to Transition, ensuring a person-centered approach.
Development incorporated qualitative input from a multidisciplinary team (N=16) including adolescents and young adults with SCD to inform content and user experience.
Initial point-of-use feedback from the target user population indicated feasibility and acceptability of the application's design and core features.
The application is slated for use in the COMETS (Community Health Workers and Mobile Health Programs to Help Young Adults with SCD Transition) study.

Intended Use & Scope

iManageSCD is designed for adolescents and young adults with sickle cell disease as an adjunct self-management and educational tool, particularly during the transition to adult healthcare. The application provides support and information; it is not a diagnostic tool and does not substitute for professional medical consultation or direct treatment planning.

Studies & Publications

1 publication

Peer-reviewed research associated with this app.

Development/Design Paper

Development of the iManage SCD mobile health application for transition

Steinway et al. (2024) · Health Care Transitions

Describes the research-driven development of this app

Objective This paper outlines the design and implementation of iManage SCD, a self-management mobile health application for adolescents and young adults (AYA) with sickle cell disease (SCD) during transition from pediatric to adult health care. Methods The Integrate, Design, Assess, Share (IDEAS) framework, emphasizing user insights, iterative design, rigorous assessment, and knowledge sharing, guided the development process. The design team consisted of researchers, psychologists, physicians, social workers, AYA with SCD, and parents of AYA with SCD (n = 16) across three states. Qualitative focus groups and interviews were conducted and analyzed using thematic analysis across the integrate and design phases. Point of use feedback from AYA with SCD was used to assess feasibility and acceptability. Results The development process was centered around tenants of the Social-ecological Model of Adolescent and Young Adult Readiness to Transition. Development integrated multidisciplinary perspectives, fostering a person-centered approach. The iterative design process involved collaboration with a digital health firm, Agency39A. Health equity and implementation considerations were addressed at individual, community, and healthcare system levels. Themes that emerged from focus groups with AYA, clinicians, and researchers in the integrate and design phases of development included recommendations for content and user experience features. Conclusions iManage SCD emerges as a comprehensive, user-friendly mobile health application, incorporating theoretical principles and direct user input. The development process demonstrated feasibility and acceptability, and the paper discusses dissemination strategies for the Community Health Workers and Mobile Health Programs to Help Young Adults with SCD Transition to Using Adult Healthcare Services (COMETS) study.