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A novel mobile health application to support cancer surveillance needs of pediatric patients and families with cancer predisposition syndromes
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  • Santiago Arconada Alvarez,
  • Bojana Pencheva,
  • Eleanor Westfall,
  • Comfort Mwalija,
  • Maren Parsell,
  • Morgan Greenleaf,
  • Christopher C Porter,
  • Wilbur Lam,
  • Robert Mannino G,
  • Sarah Mitchell
Santiago Arconada Alvarez
Emory University School of Medicine
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Bojana Pencheva
Children's Healthcare of Atlanta Inc Aflac Cancer and Blood Disorders Center
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Eleanor Westfall
Children's Healthcare of Atlanta Inc Aflac Cancer and Blood Disorders Center
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Comfort Mwalija
Georgia Clinical and Translational Science Alliance
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Maren Parsell
Emory University School of Medicine
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Morgan Greenleaf
Emory University School of Medicine
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Christopher C Porter
Children's Healthcare of Atlanta Inc Aflac Cancer and Blood Disorders Center
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Wilbur Lam
Georgia Clinical and Translational Science Alliance
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Robert Mannino G
Emory University School of Medicine
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Sarah Mitchell
Children's Healthcare of Atlanta Inc Aflac Cancer and Blood Disorders Center

Corresponding Author:[email protected]

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Abstract

Background: At least 5-10% of malignancies occur secondary to an underlying cancer predisposition syndrome (CPS). For patients with a CPS, cancer surveillance is recommended with the goal of identifying malignancy earlier, in a presumably more curable form. Surveillance protocols, including imaging studies, lab work, and procedures, can be complex, differing based on age, gender, and syndrome, which may adversely affect adherence. Mobile health (mHealth) applications have been utilized in the oncology field and could help to facilitate adherence to cancer surveillance protocols. Methods: Applying 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, 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. Results: Common themes identified include 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. Conclusions: Families 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.
20 Jan 2023Submission Checks Completed
20 Jan 2023Assigned to Editor
20 Jan 2023Submitted to Pediatric Blood & Cancer
23 Jan 2023Review(s) Completed, Editorial Evaluation Pending
26 Jan 2023Reviewer(s) Assigned
16 Feb 2023Editorial Decision: Revise Major
20 Apr 2023Submission Checks Completed
20 Apr 2023Assigned to Editor
20 Apr 20231st Revision Received
20 Apr 2023Review(s) Completed, Editorial Evaluation Pending
24 Apr 2023Reviewer(s) Assigned
11 May 2023Editorial Decision: Revise Minor
26 May 2023Submission Checks Completed
26 May 2023Assigned to Editor
26 May 20232nd Revision Received
26 May 2023Review(s) Completed, Editorial Evaluation Pending
26 May 2023Reviewer(s) Assigned
21 Jun 2023Editorial Decision: Accept