Feasibility of Patient- and Caregiver-Reported Outcome Measures in Incurable Cancer: Implications for Early Palliative Care Communication

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.

Authors

Institutions

Publication Details

Journal
Journal of Clinical Medicine
Published
2026-10-30
DOI
https://doi.org/10.3390/jcm15218449
Primary Topic
Palliative Care and End-of-Life Issues
Type
article
Field-Weighted Citation Impact
0.00

Funders

Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

Feasibility of Patient- and Caregiver-Reported Outcome Measures in Incurable Cancer: Implications for Early Palliative Care Communication

Jeff Myers, Rosalyn Anne Juergens, Hsien Yeang Seow, Courtney H. Coschi et al.
2 links
Journal of Clinical Medicine
Palliative Care and End-of-Life Issues
article

Feasibility of Patient- and Caregiver-Reported Outcome Measures in Incurable Cancer: Implications for Early Palliative Care Communication

Jeff Myers, Rosalyn Anne Juergens, Hsien Yeang Seow, Courtney H. Coschi, Daryl B. Bainbridge, Nadia Incardona, Leah R. Steinberg, Anish Kumar Arora, Karen M. Zhang, Zhimeng Jia, Oren Hannun Levine, Sarah Jill Mah
article en

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.

Journal of Clinical MedicineVol. 15(21)
University of Toronto (CA), Sinai Health System (CA), Wilfrid Laurier University (CA), McMaster University (CA)
Health Canada
Good health and well-being
Openalex Percentile: Top 10%
Palliative Care and End-of-Life Issues
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.

Laika access coming soon