Abstract
Background: Despite their vital roles, informal caregivers of adult cancer patients are commonly overlooked in cancer care. This study describes processes for identifying cancer caregivers and processes for distress screening and management among caregivers and patients in the understudied community oncology setting. Methods: Supportive care leaders from the National Cancer Institute Community Oncology Research Program practices completed online survey questions regarding caregiver identification, caregiver and patient distress screening, and distress management strategies. We described practice group characteristics and prevalence of study outcomes. Multivariable logistic regression explored associations between practice group characteristics and caregiver identification in the electronic health record (EHR). Results: Most (64.9%, 72 of 111) supportive care leaders reported routine identification and documentation of informal caregivers; 63.8% record this information in the EHR. Only 16% routinely screen caregivers for distress, though 92.5% screen patients. Distress management strategies for caregivers and patients are widely available, yet only 12.6% are routinely identified and screened and had at least 1 referral strategy for caregivers with distress; 90.6% are routinely screened and had at least 1 referral strategy for patients. Practices with a free-standing outpatient clinic (odds ratio [OR] ¼ 0.29, P ¼ .0106) and academic affiliation (OR ¼ 0.01, P ¼ .04) were less likely to identify and document caregivers in the EHR. However, higher oncologist volume was associated with an increased likelihood of recording caregiver information in the EHR (OR ¼ 1.04, P ¼ .02). Conclusions: Despite high levels of patient distress screening and management, few practices provide comprehensive caregiver engagement practices. Existing patient engagement protocols may provide a promising platform to build capacity to better address caregiver needs.
Original language | English |
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Pages (from-to) | 324-333 |
Number of pages | 10 |
Journal | Journal of the National Cancer Institute |
Volume | 116 |
Issue number | 2 |
DOIs | |
State | Published - Feb 1 2024 |
Bibliographical note
Publisher Copyright:# The Author(s) 2023. Published by Oxford University Press. All rights reserved.
Funding
This work was supported by the National Cancer Institute at the National Institutes of Health (Wake Forest NCORP Research Base 5UG1CA189824). Following standard NCORP processes, the NCI had input into the design, collection, and the analytic plans for the data. The NCI did not participate in the interpretation of data or the writing of the manuscript but reviewed the manuscript for adherence to NCORP guidelines prior to submission. We would like to acknowledge the following NCORP sites for their participation: Baptist Memorial Health Care/Mid South Minority Underserved NCORP, Cancer Research Consortium of West Michigan NCORP, Cancer Research for the Ozarks NCORP, Carle Cancer Center NCORP, Catholic Health Initiatives NCORP, Columbia University Minority Underserved NCORP, Columbus NCORP, Dayton NCORP, Delaware/Christiana Care NCORP, Essentia Health NCORP, Florida Pediatric NCORP, Geisinger Cancer Institute NCORP, Georgia Cares Minority Underserved NCORP, Georgia NCORP, Gulf South Minority Underserved NCORP, Hawaii Minority Underserved NCORP, Iowa-Wide Oncology Research Coalition NCORP, Kaiser Permanente NCORP, Medical University of South Carolina Minority Underserved NCORP, Metro Minnesota Community Oncology Research Consortium, Michigan Cancer Research Consortium NCORP, Montana Cancer Consortium NCORP, Montefiore Minority Underserved NCORP, NCORP of the Carolinas (Greenville Health System NCORP), Pacific Cancer Research Consortium NCORP, Puerto Rico Minority Underserved NCORP, Sanford NCORP of the North Central Plains, Texas Pediatric Minority Underserved NCORP, Southeast Clinical Oncology Research Consortium NCORP, VCU Massey Cancer Center Minority Underserved NCORP, Wisconsin NCORP, Upstate Carolina Consortium Community Oncology Research Program, Cancer Research of Wisconsin and Northern Michigan (CROWN) Consortium, National Capital Area Minority Underserved NCORP, Atlantic Health Cancer Consortium Community Oncology Research Program, and MaineHealth Cancer Care Network. Additionally, we would like to thank Wake Forest NCORP Research Base staff members Karen Craver, Renee Glenn, Eden Gurganus, Bill Stanfield, Julie Turner, and Cheyenne Wagi. This work was supported by the National Cancer Institute at the National Institutes of Health (Wake Forest NCORP Research Base 5UG1CA189824).
Funders | Funder number |
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Cancer Research of Wisconsin and Northern Michigan | |
Delaware/Christiana Care NCORP | |
Essentia Health NCORP | |
Florida Pediatric NCORP | |
Geisinger Cancer Institute NCORP | |
Gulf South Minority Underserved NCORP | |
Iowa-Wide Oncology Research Coalition NCORP | |
Kaiser Permanente NCORP | |
MaineHealth Cancer Care Network | |
Medical University of South Carolina Minority Underserved NCORP | |
Metro-Minnesota Community Oncology Research Consortium | |
Michigan Cancer Research Consortium NCORP | |
Montana Cancer Consortium NCORP | |
Montefiore Minority Underserved NCORP | |
NCORP SDMC | |
National Capital Area Minority Underserved NCORP | |
North Central Plains | |
Pacific Cancer Research Consortium NCORP | |
Puerto Rico Minority Underserved NCORP | |
Southeast Clinical Oncology Research Consortium | |
Texas Pediatric Minority Underserved NCORP | |
National Institutes of Health (NIH) | 5UG1CA189824 |
National Institutes of Health (NIH) | |
National Childhood Cancer Registry – National Cancer Institute |
ASJC Scopus subject areas
- Oncology
- Cancer Research