Reducing Cancer Care Partner Burden: A User-Centered Design Approach for an mHealth App (Preprint)
BACKGROUND Informal care partners are essential partners in the delivery of complex cancer care services at home, and about 25% of those caring for cancer patients spend more than 40 hours a week providing services. Care partners frequently suffer psychological, behavioral, and physiological effects that can not only affect the patients’ mental and physical health, but also impair the care partners’ health. OBJECTIVE In this paper, we describe a user-centered design approach to build an mHealth smartphone app to provide support and resources to informal care partners while enabling them to remotely monitor the cancer survivor’s health for unanticipated adverse events, thereby reducing burden for clinical staff. METHODS An iterative information gathering process was conducted that included a) potential customer discussions with 138 people to assess health care value propositions and corresponding benefit modules; b) semi-structured interviews with clinicians (N=3), cancer patients (N=3) and care partners (N=3) to identify needs and interests, and; c) a 28-day beta iOS user testing with feasibility and acceptability feedback from 7 care partners in two geographically different academic cancer centers (Duke and Stanford). This study was registered on clinicaltrials.gov (NCT04018677). RESULTS The interviews conducted prior to developing the mHealth app prototype identified areas of consistency in responses between different stakeholder groups in terms of how the mobile app should work, as well as areas of difference. The beta test of the prototype indicated satisfaction with the app’s usability. Care partners preferred to focus primarily on the patient’s health and not their own, and regular surveys on the patient’s symptoms helped educate care partners and reduce their anxiety. CONCLUSIONS This study describes the user-centered design process and demonstrates the feasibility and acceptability of TOGETHERCareTM, an iOS smartphone app for informal cancer care partners. Larger studies, in various oncology populations, are needed to establish the efficacy of the app in reducing care partner burden and to facilitate critical remote monitoring CLINICALTRIAL