TY  - JOUR
AU  - Longacre, Margaret L
AU  - Chwistek, Marcin
AU  - Keleher, Cynthia
AU  - Siemon, Mark
AU  - Egleston, Brian L
AU  - Collins, Molly
AU  - Fang, Carolyn Y
PY  - 2023
DA  - 2023/11/2
TI  - Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
JO  - JMIR Hum Factors
SP  - e47624
VL  - 10
KW  - caregiving
KW  - patient portal, health policy
KW  - palliative oncology
KW  - oncology
KW  - engagement
KW  - family caregiver
KW  - caregiver
KW  - communication
KW  - usage
KW  - usability
KW  - clinical care
KW  - cancer
AB  - Background: The engagement of family caregivers in oncology is not universal or systematic. Objective: We implemented a process intervention (ie, patient-caregiver portal system) with 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 to inform clinicians and connect the caregiver to resources as needed. Methods: We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. Results: Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed “quite a bit” (n=1, 16.7%) or “very much” (n=3, 50%) that the system allowed them to provide better care. Conclusions: Our 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. 
SN  - 2292-9495
UR  - https://humanfactors.jmir.org/2023/1/e47624
UR  - https://doi.org/10.2196/47624
UR  - http://www.ncbi.nlm.nih.gov/pubmed/37917129
DO  - 10.2196/47624
ID  - info:doi/10.2196/47624
ER  -