Background: Family caregivers are often inexperienced and require information from clinic visits to effectively provide care for patients. Despite reported deficiencies, 68% of health systems facilitate sharing information with family caregivers through the patient portal. The patient portal is especially critical in the context of serious illnesses, like advanced cancer and dementia, where caregiving is intense and informational needs change over the trajectory of disease progression.
Objective: The objective of our study was to analyze a large, nationally representative sample of family caregivers from the National Study of Caregiving (NSOC) to determine individual characteristics and demographic factors associated with patient portal use among family caregivers of persons living with dementia and those living with cancer.
Methods: We conducted a secondary data analysis using data from the 2020 NSOC sample of family caregivers linked to National Health and Aging Trends Study. Weighted regression analysis by condition (ie, dementia or cancer) was used to examine associations between family caregiver use of the patient portal and demographic variables, including age, race or ethnicity, gender, employment status, caregiver health, education, and religiosity.
Results: A total of 462 participants (representing 4,589,844 weighted responses) were included in our analysis. In the fully adjusted regression model for caregivers of persons living with dementia, Hispanic ethnicity was associated with higher odds of patient portal use (OR: 2.81, 95% CI 1.05-7.57; P=.04), whereas qualification lower than a college degree was associated with lower odds of patient portal use by family caregiver (OR 0.36, 95% CI 0.18-0.71; P<.001. In the fully adjusted regression model for caregivers of persons living with cancer, no variables were found to be statistically significantly associated with patient portal use at the .05 level.
Conclusions: In our analysis of NSOC survey data, we found differences between how dementia and cancer caregivers access the patient portal. As the patient portal is a common method of connecting caregivers with information from clinic visits, future research should focus on understanding how the portal is used by the groups we have identified, and why.
Keywords: age; cancer; caregiver; clinic; dementia; education; employment; ethnicity; family caregiver; gender; health system; intervention; model; palliative care; patient portal; race; regression analysis.
© Reed W R Bratches, Jaclyn A Wall, Frank Puga, Giovanna Pilonieta, Rita Jablonski, Marie Bakitas, David S Geldmacher, J Nicholas Odom. Originally published in JMIR Aging (https://aging.jmir.org).