JMIR Publications

ABSTRACT

Background:

As family caregivers of hematopoietic cell transplantation (HCT) patients have multifaceted caregiving responsibilities of long duration (medical, household, financial), they also have multiple needs, physical, social, psychological, and informational.

Objective:

This study explored prevalence of electronic health record (EHR) patient portal use by family caregivers for managing both their own and their HCT care recipient’s health, as well as potential factors associated with portal use.

Methods:

A national electronic caregiver health survey, first developed via cognitive interviewing methods of HCT caregivers, was distributed nationally by patient advocacy organizations to family caregivers of HCT patients. It assessed self-reported caregiver demographics, caregiving characteristics, depression and anxiety assessed by the Patient Health Questionnaire-4, coping assessed by the Brief COPE, and caregiver portal use to manage of their care recipient’s and their own health.

Results:

We found 77% of respondents (n=948) accessed EHR patient portals for their care-recipient, themselves or both. Multivariate models indicated caregiver use of care recipient EHR portals was more likely with younger, white, married, lower income caregivers caring for a parent, residing with the care recipient and experiencing more caregiver depression. Caregiver use of their own EHR portal was more likely with younger, white, higher income caregivers caring for a parent, and experiencing chronic medical conditions of their own. Partially due to multi-collinearity, anxiety and coping did not contribute independently to this model.

Conclusions:

Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mHealth applications.