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