Accepted for/Published in: JMIR Human Factors
Date Submitted: Mar 27, 2023
Date Accepted: Aug 27, 2023
Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
ABSTRACT
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. Clinical Trial: NA
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.