JMIR Publications

ABSTRACT

Background:

Family caregivers are often untrained and require information from clinic visits in order to effectively provide care for patients. Legislation like the CARE Act requires health systems to provide information from clinic visits to family caregivers to enable them to provide care. Despite reported deficiencies, the common method of sharing information with family caregivers is through the patient portal. The patient portal is especially critical in conditions using palliative care, like cancer and dementia, where conditions are intense and informational needs change frequently as conditions progress. In order to design interventions to improve the information in the patient portal for family caregivers, it is critical to identify patient portal use by different groups.

Objective:

To determine patient portal use by group in a nationally-representative sample of family caregivers

Methods:

This is an analysis of the National Survey of Caregiving, a large nationally-representative survey of family caregivers linked to National Health and Aging Trends Study participants. Weighted regression analysis by condition (dementia or cancer) with patient portal use as the dependent variable and demographic variables including age, race/ethnicity, gender, employment status, caregiver health, education, and religiosity.

Results:

There were 462 participants (n= 4,589,844 weighted) included in our analyses. In the fully adjusted regression model for caregivers of patients with dementia, identification with Hispanic ethnicity (OR: 2.81; 95%CI 1.05, 7.57; p=0.04) was associated with a higher odds of patient portal use. Having less than a college degree (OR 0.36; 95%CI 0.18, 0.71; p=<0.001) was associated with a lower odds of patient portal use. In the fully adjusted regression model for caregivers of patients with cancer, no variables were statistically significantly associated with patient portal use at the 0.05 level.

Conclusions:

Family caregivers commonly receive information from clinic visits through the patient portal, as required by the CARE Act. We found differences in the accessibility of that information and identified that caregivers of patients with dementia use the patient portal at different rates, particularly those identifying as Hispanic and those with lower educational attainment. As the patient portal is the common method of connecting caregivers with information from clinic visits, health systems should consider cultural and educational interventions to support family caregivers with their informational needs.