Abstract 2033: Reducing cancer caregiver burden: A user-centered design approach for an mHealth app
Authors: Ingrid Oakley-Girvan, Vasu Divi, Oxana Palesh, Jena Daniels, Lisa G. Rosas, Dale O'Brien, Sharon W. Davis, Arif H. Kamal, Allison W. Kurian, Michelle R. Longmire
Journal: Cancer Research (2020)

Abstract Background: Informal cancer caregivers are being asked to provide more extensive home care for cancer patients. It is well documented that caregivers frequently experience psychological and behavioral effects that impact their overall well-being. Digital solutions can support informal caregivers by providing key information on the patient's care and nudging them to focus on their own mental and physical health. Objective: In this paper, we describe a user-centered design approach to build a digital solution by engaging with stakeholders that include clinical staff, health care decision makers, cancer patients and survivors, and informal caregivers. The NIH funded digital solution, TOGETHERCareTM, (Track Outcomes &amp; Guidance, Technology for Health &amp; Effective Resources for Care) is a smart phone mobile app to provide support and resources to informal caregivers while enabling them to monitor the cancer survivor's health for potential adverse events, thereby preventing unnecessary emergency care and reducing daily caregiver worries. Methods: An iterative information gathering process was conducted that included a) key-informant (n=139) and semi-structured interviews (n=11) with stakeholders to assess health care value propositions and corresponding modules of benefit; b) prototype review, evaluation and feedback by a Patient Advisory Council and Clinical Advisory Team and; c) a 28-day beta user-testing with feasibility and acceptability feedback from 15 stakeholders in two geographically diverse 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 consistency in responses between different stakeholder groups in terms of how the mobile app should work, and areas of difference. Clinical teams focused on app usage efficiency and features that would improve information sharing and follow-up visits with survivors. Survivors and caregivers were more focused on features that would provide assistance with at-home medical tasks and activities of daily living. The interviews and data analysis following the Beta test of the prototype indicated satisfaction with the app's usability, that caregivers preferred to focus primarily on the patient's health and not their own, and that regular surveys on the patient's symptoms educated and reduced anxiety among caregivers. Conclusions: This study describes the user-centered design process and demonstrates the feasibility and acceptability of TOGETHERCareTM, an iOS smart phone app for informal cancer caregivers. Larger studies, in various oncology populations, are needed to further evaluate efficacy of the app across health metrics that matter to the different stakeholders. Citation Format: Ingrid Oakley-Girvan, Vasu Divi, Oxana Palesh, Jena Daniels, Lisa G. Rosas, Dale O'Brien, Sharon W. Davis, Arif H. Kamal, Allison W. Kurian, Michelle R. Longmire. Reducing cancer caregiver burden: A user-centered design approach for an mHealth app [abstract]. In: Proceedings of the Annual Meeting of the American Association for Cancer Research 2020; 2020 Apr 27-28 and Jun 22-24. Philadelphia (PA): AACR; Cancer Res 2020;80(16 Suppl):Abstract nr 2033.