Caregiver engagement practices in National Cancer Institute Clinical Oncology Research Program settings: Implications for research to advance the field

Chandylen L. Nightingale, Katherine R. Sterba, Laurie E. McLouth, Erin E. Kent, Emily V. Dressler, Alexandra Dest, Anna C. Snavely, Christian S. Adonizio, Mark Wojtowicz, Heather B. Neuman, Anne E. Kazak, Ruth C. Carlos, Matthew F. Hudson, Joseph M. Unger, Charles S. Kamen, Kathryn E. Weaver

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

Abstract

Background: Supportive care interventions have demonstrated benefits for both informal and/or family cancer caregivers and their patients, but uptake generally is poor. To the authors' knowledge, little is known regarding the availability of supportive care services in community oncology practices, as well as engagement practices to connect caregivers with these services. Methods: Questions from the National Cancer Institute Community Oncology Research Program (NCORP)'s 2017 Landscape Survey examined caregiver engagement practices (ie, caregiver identification, needs assessment, and supportive care service availability). Logistic regression was used to assess the relationship between the caregiver engagement outcomes and practice group characteristics. Results: A total of 204 practice groups responded to each of the primary outcome questions. Only 40.2% of practice groups endorsed having a process with which to systematically identify and document caregivers, although approximately 76% were routinely using assessment tools to identify caregiver needs and approximately 63.7% had supportive care services available to caregivers. Caregiver identification was more common in sites affiliated with a critical access hospital (odds ratio [OR], 2.44; P =.013), and assessments were less common in safety-net practices (OR, 0.41; P =.013). Supportive care services were more commonly available in the Western region of the United States, in practices with inpatient services (OR, 2.96; P =.012), and in practices affiliated with a critical access hospital (OR, 3.31; P =.010). Conclusions: Although many practice groups provide supportive care services, fewer than one-half systematically identify and document informal cancer caregivers. Expanding fundamental engagement practices such as caregiver identification, assessment, and service provision will be critical to support recent calls to improve caregivers' well-being and skills to perform caregiving tasks.

Original languageEnglish
Pages (from-to)639-647
Number of pages9
JournalCancer
Volume127
Issue number4
DOIs
StatePublished - Feb 15 2021

Bibliographical note

Funding Information:
Funded by the National Cancer Institute (NCI) of the National Institutes of Health through the NCI Community Oncology Research Program (NCORP), including awards 1UG1 CA189824 (Wake Forest Health Sciences NCORP grant), 2UG1 CA189828 (ECOG‐ACRIN NCORP Research Base), and UCA189972B (NCORP of the Carolinas).

Funding Information:
Chandylen L. Nightingale has received grants from the National Institutes of Health (NIH)/National Cancer Institute (NCI) (UG1 CA189824) for work performed as part of the current study and grants from the NIH/NCI (R03 CA208560) and NIH/National Center for Advancing Translational Sciences (NCATS) (UL1TR001420) for work performed outside of the current study. Laurie E. V. McLouth was supported by the NCI/NIH (R25CA122061). Emily Dressler has received grants from the NIH/NCI (UG1 CA189824) for work performed as part of the current study and grants from the NIH/NCI (R01 CA207158, R01 CA226078, P50 CA244693, and UG1 CA18982451), grants from the Department of Defense (Prostate Cancer NCORP Study), grants from the NIH/National Heart, Lung, and Blood Institute (NHLBI) (U24 HL141732‐01A1), and grants from Omada Health for work performed outside of the current study. Alexandra Dest has received grants from the NIH/NCI (UG1 CA189824) for work performed as part of the current study. Anna C. Snavely has received grants from the NIH/NCI (UG1 CA189824) for work performed as part of the current study and has received grants and personal fees from Shattuck Labs for work performed outside of the current study. Christian S. Adonizio has received grants from the NIH/NCI (UG1CA189847) for work performed as part of the current study and has received grants from Merck for work performed outside of the current study. Mark Wojtowicz has received grants from the NIH/NCI (UG1CA189847) for work performed as part of the current study and has received grants from Merck for work performed outside of the current study. Ruth C. Carlos has received grants from the NIH/NCI (2UG1 CA189828) for work performed as part of the current study and receives salary support as Editor in Chief for the for work performed outside of the current study. Matthew F. Hudson has received grants from the NCI (UCA189972B [NCORP of the Carolinas] and 2UG1CA189867‐07 [NRG Oncology]) for work performed as part of the current study. Charles S. Kamen reports grants from the NIH/NCI (UG1 CA189961) for work performed as part of the current study and grants from the NIH/NCI (K07 CA190529) for work performed outside of the current study. Kathryn E. Weaver has received grants from the NIH/NCI (UG1 CA189824) for work performed as part of the current study and grants from the NIH/NCI (R01CA226078, P30CA012197, R01CA207158, and P50CA244693) for work performed outside of the current study. The other authors made no disclosures. Journal of the American College of Radiology

Publisher Copyright:
© 2020 American Cancer Society

Keywords

  • assessment
  • cancer
  • caregiving
  • oncology
  • supportive care

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

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