Cargando…

Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit

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 wi...

Descripción completa

Detalles Bibliográficos
Autores principales: Longacre, Margaret L, Chwistek, Marcin, Keleher, Cynthia, Siemon, Mark, Egleston, Brian L, Collins, Molly, Fang, Carolyn Y
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10654898/
https://www.ncbi.nlm.nih.gov/pubmed/37917129
http://dx.doi.org/10.2196/47624
_version_ 1785136710858833920
author Longacre, Margaret L
Chwistek, Marcin
Keleher, Cynthia
Siemon, Mark
Egleston, Brian L
Collins, Molly
Fang, Carolyn Y
author_facet Longacre, Margaret L
Chwistek, Marcin
Keleher, Cynthia
Siemon, Mark
Egleston, Brian L
Collins, Molly
Fang, Carolyn Y
author_sort Longacre, Margaret L
collection PubMed
description 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.
format Online
Article
Text
id pubmed-10654898
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher JMIR Publications
record_format MEDLINE/PubMed
spelling pubmed-106548982023-11-02 Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit Longacre, Margaret L Chwistek, Marcin Keleher, Cynthia Siemon, Mark Egleston, Brian L Collins, Molly Fang, Carolyn Y JMIR Hum Factors Original Paper 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. JMIR Publications 2023-11-02 /pmc/articles/PMC10654898/ /pubmed/37917129 http://dx.doi.org/10.2196/47624 Text en ©Margaret L Longacre, Marcin Chwistek, Cynthia Keleher, Mark Siemon, Brian L Egleston, Molly Collins, Carolyn Y Fang. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 02.11.2023. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Human Factors, is properly cited. The complete bibliographic information, a link to the original publication on https://humanfactors.jmir.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Longacre, Margaret L
Chwistek, Marcin
Keleher, Cynthia
Siemon, Mark
Egleston, Brian L
Collins, Molly
Fang, Carolyn Y
Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
title Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
title_full Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
title_fullStr Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
title_full_unstemmed Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
title_short Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit
title_sort patient-caregiver portal system in palliative oncology: assessment of usability and perceived benefit
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10654898/
https://www.ncbi.nlm.nih.gov/pubmed/37917129
http://dx.doi.org/10.2196/47624
work_keys_str_mv AT longacremargaretl patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit
AT chwistekmarcin patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit
AT kelehercynthia patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit
AT siemonmark patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit
AT eglestonbrianl patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit
AT collinsmolly patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit
AT fangcarolyny patientcaregiverportalsysteminpalliativeoncologyassessmentofusabilityandperceivedbenefit