Processes for identifying caregivers and screening for caregiver and patient distress in community oncology: results from WF-1803CD

Chandylen L. Nightingale, Anna C. Snavely, Laurie E. McLouth, Emily V. Dressler, Erin E. Kent, Christian S. Adonizio, Suzanne C. Danhauer, Rachel Cannady, Judith O. Hopkins, Heather Kehn, Kathryn E. Weaver, Katherine R. Sterba

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

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 languageEnglish
Pages (from-to)324-333
Number of pages10
JournalJournal of the National Cancer Institute
Volume116
Issue number2
DOIs
StatePublished - 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).

FundersFunder number
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

    Fingerprint

    Dive into the research topics of 'Processes for identifying caregivers and screening for caregiver and patient distress in community oncology: results from WF-1803CD'. Together they form a unique fingerprint.

    Cite this