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BACKGROUND The engagement of family caregivers in oncology is not universal or systematic. OBJECTIVE We modified an existing patient portal system to 1) allow a patient to specify their caregiver and communication preferences with that caregiver; 2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs; and 3) provide an electronic notification of the dyad’s responses to the care team. METHODS We assessed usage and satisfaction with this Patient-Caregiver Portal system among cancer patients receiving palliative care, their caregivers, and clinicians. RESULTS Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Sixty percent of patients indicated preferences to share communication with their caregiver. Caregivers reported high emotional (48%), financial (32%) and physical (31%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, n=15) and caregivers (94%, n=17) were satisfied with the system, while 66.7% of clinicians (n=6) agreed ‘quite a bit’ (16.7%) or ‘very much’ (50%) that the system allowed them to provide better care. CONCLUSIONS Findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a Patient-Caregiver Portal System may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses. CLINICALTRIAL NA |
