Feasibility of Patient- and Caregiver-Reported Outcome Measures in Incurable Cancer: Implications for Early Palliative Care Communication
4 affiliations
- 1Department of Oncology, McMaster University, Hamilton, ON L8S 4L8, Canada
- 2Temmy Latner Centre for Palliative Care, Sinai Health Systems, Toronto, ON M5T 3L9, Canada
- 3Department of Family and Community Medicine, University of Toronto, Toronto, ON M5S 1A1, Canada
- 4Department of Health Sciences, Wilfrid Laurier University, Waterloo, ON N2L 3C5, Canada
Abstract
Background: Advances in cancer treatment mean many individuals with incurable cancer live for extended periods, creating opportunities for early integration of palliative care. High-quality communication about illness trajectory, patient values, and goals is a core mechanism through which early palliative care improves patient and family outcomes. Yet patient- and caregiver-reported outcomes reflecting these domains are rarely measured early in the illness trajectory. To address this gap, we tested the feasibility of collecting validated patient- (and caregiver-) reported outcome measures (PROMs) capturing domains central to serious illness communication (SIC) and more broadly, an early palliative approach to care. Methods: In this cross-sectional study at a regional cancer centre, patients with incurable cancer and their caregivers completed an online survey within three days of a routine oncology visit. PROMs included Feeling Heard and Understood, Herth Hope Index, Illness Understanding, Hospital Anxiety and Depression Scale, and the Preparedness for Caregiving Scale (caregivers only). Feasibility metrics included recruitment, completion rates, data completeness, and perceived importance of PROMs. Results: Seventy-two patients and 65 caregivers completed the survey (83% and 95% of those approached). All prespecified feasibility metrics were met, with minimal missing data and high willingness to repeat surveys (>93%). Most respondents (>79%) rated each PROM as important. PROM scores were a secondary descriptive outcome, with hope and feeling heard and understood rated relatively high. For illness understanding, 17% of patients and 9% of caregivers believed the cancer would be cured completely. Caregiver emotional burden was substantial: 49% reported elevated anxiety compared with 31% of patients. Conclusions: Collecting PROMs reflecting communication quality, illness understanding, hope, anxiety and depression, and caregiving preparedness early in the incurable cancer trajectory appeared feasible within the conditions of this study and suggests a practical way to evaluate outcomes central to SIC, which is a key part of an early palliative approach to care.
Related
- Bridging primary and palliative care: A cross-sectional study of the relationship between perceived access to family physicians and caregiver burden.
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- Feasibility of a multidimensional interdisciplinary rehabilitation program for people with dementia and their informal primary caregivers - a randomized pilot trial with a caregiver focus.
BibTeX
@article{seow2026feasibility,
title = {{Feasibility of Patient- and Caregiver-Reported Outcome Measures in Incurable Cancer: Implications for Early Palliative Care Communication}},
author = {Hsien Seow and Daryl Bainbridge and Rosalyn A. Juergens and Oren Levine and Courtney Coschi and Sarah Mah and Karen Zhang and Zhimeng Jia and Jeffrey Myers and Anish K. Arora and Nadia Incardona and Leah Steinberg},
journal = {Journal of Clinical Medicine},
year = {2026},
month = oct,
doi = {10.3390/jcm15218449},
url = {https://www.mdpi.com/2077-0383/15/21/8449},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Feasibility of Patient- and Caregiver-Reported Outcome Measures in Incurable Cancer: Implications for Early Palliative Care Communication
AU - Hsien Seow
AU - Daryl Bainbridge
AU - Rosalyn A. Juergens
AU - Oren Levine
AU - Courtney Coschi
AU - Sarah Mah
AU - Karen Zhang
AU - Zhimeng Jia
AU - Jeffrey Myers
AU - Anish K. Arora
AU - Nadia Incardona
AU - Leah Steinberg
PY - 2026
DA - 2026/10/30
JO - Journal of Clinical Medicine
DO - 10.3390/jcm15218449
UR - https://www.mdpi.com/2077-0383/15/21/8449
AB - Background: Advances in cancer treatment mean many individuals with incurable cancer live for extended periods, creating opportunities for early integration of palliative care. High-quality communication about illness trajectory, patient values, and goals is a core mechanism through which early palliative care improves patient and family outcomes. Yet patient- and caregiver-reported outcomes reflecting these domains are rarely measured early in the illness trajectory. To address this gap, we tested the feasibility of collecting validated patient- (and caregiver-) reported outcome measures (PROMs) capturing domains central to serious illness communication (SIC) and more broadly, an early palliative approach to care. Methods: In this cross-sectional study at a regional cancer centre, patients with incurable cancer and their caregivers completed an online survey within three days of a routine oncology visit. PROMs included Feeling Heard and Understood, Herth Hope Index, Illness Understanding, Hospital Anxiety and Depression Scale, and the Preparedness for Caregiving Scale (caregivers only). Feasibility metrics included recruitment, completion rates, data completeness, and perceived importance of PROMs. Results: Seventy-two patients and 65 caregivers completed the survey (83% and 95% of those approached). All prespecified feasibility metrics were met, with minimal missing data and high willingness to repeat surveys (>93%). Most respondents (>79%) rated each PROM as important. PROM scores were a secondary descriptive outcome, with hope and feeling heard and understood rated relatively high. For illness understanding, 17% of patients and 9% of caregivers believed the cancer would be cured completely. Caregiver emotional burden was substantial: 49% reported elevated anxiety compared with 31% of patients. Conclusions: Collecting PROMs reflecting communication quality, illness understanding, hope, anxiety and depression, and caregiving preparedness early in the incurable cancer trajectory appeared feasible within the conditions of this study and suggests a practical way to evaluate outcomes central to SIC, which is a key part of an early palliative approach to care.
SN - 2077-0383
ER -