J. Nicholas Dionne-Odom

Discipline: Nurse

Funding awarded to: University of Alabama at Birmingham

Distress Prediction in Advanced Cancer Family Caregivers and their Care Recipients using Digital Phenotyping

The purpose of this project is to explore the feasibility, acceptability, and potential utility of passively-collected smartphone data to assess distress in family caregivers and their care recipients with advanced cancer in an underserved context. We will passively collect smartphone behavioral data, including GPS, accelerometer, and anonymized call and text messaging use patterns, and develop time-varying statistical models to detect behavioral anomalies and correlates these anomalies with participant-reported distress and quality of life over 24 weeks. Our sample will include 50 family caregivers and 50 of their care recipients with newly-diagnosed advanced cancer who have a personal smartphone, over-recruiting underserved individuals who are either rural-dwelling and/or African-American. Participants will download an app called Beiwe to securely collect de-identified research-quality smartphone data. We will assess acceptability by conducting qualitative interviews with participants. The results could be exceptionally high impact as they can be potentially used to develop new clinical models of early palliative care to enhance outcomes and reduce disparities in cancer and other serious illnesses.

“My objective as a Sojourns Scholar Leader is to acquire the skills and experience necessary to become a national leader in developing, testing, and implementing “real world” early palliative care support for family caregivers of persons with advanced cancer, particularly in underserved populations and settings, that leverages 21st century developments in digital health. As an academic nurse scientist, clinical trialist, and board-certified palliative care advanced practice nurse, I have spent the past 8 years developing and testing early palliative care coaching interventions to optimize the coping, skills, and well-being of underserved rural and African-American family caregivers of persons with advanced cancer and heart failure. Support from this program will enable me to take the next critical steps in my development as a national leader.”