A novel mobile health application to support cancer surveillance needs of patients and families with cancer predisposition syndromes

Author:

Alvarez Santiago J. Arconada12ORCID,Pencheva Bojana3,Westfall Eleanor3,Mwalija Comfort24,Parsell Maren12,Greenleaf Morgan12,Porter Christopher C.35ORCID,Lam Wilbur A.2356ORCID,Mannino Robert G.12,Mitchell Sarah G.35ORCID

Affiliation:

1. Emory University School of Medicine Atlanta Georgia USA

2. AppHatchery Georgia Clinical and Translational Science Alliance Atlanta Georgia USA

3. Aflac Cancer & Blood Disorders Center Children's Healthcare of Atlanta Atlanta Georgia USA

4. Global Health Informatics Institute Lilongwe, Malawi

5. Department of Pediatrics Emory University School of Medicine Atlanta Georgia USA

6. Department of Biomedical Engineering Georgia Institute of Technology Atlanta Georgia USA

Abstract

AbstractBackgroundAt least 5%–10% of malignancies occur secondary to an underlying cancer predisposition syndrome (CPS). For these families, cancer surveillance is recommended with the goal of identifying malignancy earlier, in a presumably more curable form. Surveillance protocols, including imaging studies, bloodwork, and procedures, can be complex and differ based on age, gender, and syndrome, which adversely affect adherence. Mobile health (mHealth) applications (apps) have been utilized in oncology and could help to facilitate adherence to cancer surveillance protocols.MethodsApplying a user‐centered mobile app design approach, patients with a CPS and/or primary caregivers were interviewed to identify current methods for care management and barriers to compliance with recommended surveillance protocols. Broad themes from these interviews informed the design of the mobile app, HomeTown, which was subsequently evaluated by usability experts. The design was then converted into software code in phases, evaluated by patients and caregivers in an iterative fashion. User population growth and app usage data were assessed.ResultsCommon themes identified included general distress surrounding surveillance protocol scheduling and results, difficulty remembering medical history, assembling a care team, and seeking resources for self‐education. These themes were translated into specific functional app features, including push reminders, syndrome‐specific surveillance recommendations, ability to annotate visits and results, storage of medical histories, and links to reliable educational resources.ConclusionsFamilies with CPS demonstrate a desire for mHealth tools to facilitate adherence to cancer surveillance protocols, reduce related distress, relay medical information, and provide educational resources. HomeTown may be a useful tool for engaging this patient population.

Funder

Georgia Clinical and Translational Science Alliance

Children's Healthcare of Atlanta

Publisher

Wiley

Subject

Oncology,Hematology,Pediatrics, Perinatology and Child Health

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