Recruitment of informal caregivers into community oncology research studies: results from the 2022 Landscape Assessment

Abstract

Introduction

In the United States, at least 2.8 million informal (unpaid/family) caregivers provide care for adults with a primary diagnosis of cancer.¹ Informal caregivers offer support to patients and comprise an important part of the cancer care team. Studies suggest that informal caregivers are generally undertrained and underprepared for their caregiving role.¹ Engaging in caregiving activities may have negative effects on caregivers themselves, including functional decline, mental health challenges, heightened financial burden, and disruptions to family life.²

Recognizing the importance of informal caregivers and their challenges, the National Cancer Institute and the National Institute for Nursing Research recommend more research on informal caregivers,³ but system-level data describing recruitment of informal caregivers into cancer research are limited. In this study, we describe National Cancer Institute Community Oncology Research Program (NCORP) community oncology practices that report recruiting informal caregivers for research studies and assess practice characteristics associated with prior recruitment experience. Understanding the experiences of community oncology practices in recruiting informal caregivers into research studies can inform resources and practice-level strategies to improve their enrollment.

Methods

NCORP is a national network designed to facilitate cancer clinical trials in community oncology practices and is comprised of 7 research bases and 46 community affiliates. We used data from the 2022 NCORP Landscape Assessment, conducted cross-sectionally within NCORP to collect information on community infrastructure and research capacity. We reported the Landscape Assessment Committee members in Supplementary Table S1. The Landscape Assessment methodology and questions have previously been described.⁴

Survey data are available at the practice group level (ie, clinics that share providers, patients, and infrastructure). The primary outcome was prior experience recruiting informal caregivers into research studies, categorized as a binary variable (yes vs no). Wilcoxon rank-sum tests and chi-squared tests were used to compare practice group, clinical staff, and oncology patient characteristics between the 2 groups (Table 1). We built separate logistic regression models to assess characteristics associated with recruitment of informal caregivers into research studies. Each model was individually adjusted for potential confounders, including geographic region, practice ownership type, and total number of oncology providers.

Results

In 2022, 517 discrete practices responded to the survey (52%, 517/≥1000) which corresponded to 271 practice groups. After excluding those serving patients in pediatric care exclusively (n = 12) and those missing information on recruitment of informal caregivers (n = 1), 258 practice groups were included in final analyses (Table 1). Most practice groups were in the Midwest or South (72.5%), owned by large regional/multistate health systems (60.5%), and employed advanced practice providers (APPs) in clinical care (92.2%) or research (73.6%). Practice groups had an average of 20 oncology providers (SD 28.8, interquartile range [IQR] 7-22) and reported an average of 1735 new cancer cases annually (SD 2793, IQR 475-2077).

Less than one-third of practice groups (30.2%, 78/258) reported having experience recruiting informal caregivers into research studies. Informal caregivers were recruited in the following settings: medical oncology (97.4%, 76/78), radiation oncology (24.4%, 19/78), survivorship clinic (14.1%, 11/78), surgical oncology (10.3%, 8/78), and hospice clinic (2.6%, 2/78). On multivariable analyses (Table 2), having a greater number of oncology providers (increase per 10 providers, adjusted odds ratio [AOR] 1.16, 95% CI 1.03-1.31) and having APPs involved in clinical research (AOR 2.17, 95% CI 1.05-4.48) were significantly associated with having experience recruiting informal caregivers for research studies.

Discussion

In this study, we found that only 30% of community oncology practice groups had experience recruiting informal caregivers into research studies, and the majority of recruitment occurred in medical oncology settings. Having a greater number of oncology providers and having APPs involved in research were significantly associated with recruitment of informal caregivers into research studies.

Low recruitment of informal caregivers into research studies in community oncology practices may occur for several reasons. First, as shown in previous studies as well as ours, practices with less clinical and research infrastructure (as indicated by fewer oncology providers and APPs involved in research) were less likely to enroll caregivers, likely due to prioritizing patient enrollment in a context of constrained research resources.^3,5 Second, oncology practices may face study-level barriers such as challenges in identifying caregivers for research purposes, ineffective recruitment strategies (eg, recruiting in busy clinical settings that prioritize health care provision), and participation burden (eg, questionnaires).^4,6-8 Third, at the informal caregiver level, barriers may include economic and time constraints, personal health conditions, and a perception of limited benefits from participation.^6,9

Collective efforts are needed to address these barriers for recruiting caregivers into cancer research. At the system level, education about the importance of caregiver research is needed to increase protocols that involve caregivers. Provision of education and technical assistance would likely help oncology practices systematically identify and document caregivers in the health care system to provide a pool of potential research participants.^4,8 This practice would also align with the Caregiver Advise, Record, Enable (CARE) Act mandates. Our findings also suggest that APPs may be strong clinical partners for caregiver research and could be engaged as clinical champions to promote recruitment. At the study and caregiver levels, engaging caregiver and community stakeholders in research activities is recommended.⁵ This strategy has been shown to be feasible in the COACH study conducted within the NCORP.¹⁰ Input from caregiver stakeholders can offer valuable insights into how and when caregivers prefer to be approached in the practice or remotely, and what they desire to know about the study. These stakeholders can also help develop recruitment materials and study design, ensuring they align with the culture, values, and expectations of caregivers as well as patients. Future research is warranted to explore the feasibility of these strategies and other potential approaches, especially in community oncology practices.

This study has several limitations. First, NCORP sites may not be representative of community oncology practices nationwide. Second, the Landscape Assessment collected information at the practice group level, and therefore information at the individual clinic level was not available. Finally, in-depth data about caregiver recruitment experiences were lacking, including research purposes, recruitment approaches, number of informal caregivers recruited, and caregiver demographics, as these types of data collection are beyond the scope of the Landscape Assessment.

Conclusion

Informal caregivers play a crucial role in caring for patients with cancer. Nevertheless, only one-third of community oncology practices reported experience recruiting informal caregivers into research studies. Practices with a low number of oncology providers and a lack of APPs involved in research were less likely to recruit caregivers. Future studies should explore strategies, such as education and integration of APPs/caregiver stakeholders in research, to improve caregiver recruitment across various oncology settings.

Supplementary material

Supplementary material is available at The Oncologist online.

Acknowledgments

We would like to thank Susan Rosenthal, MD, for her editorial assistance.

Author contributions

Ying Wang: data analysis and interpretation, manuscript writing, final approval of manuscript; Chandylen L. Nightingale: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript; Christa Braun-Inglis: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript; Katherine Sterba: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript; Kathryn E. Weaver: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript; Eden Wood: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript; Sindhuja Kadambi: manuscript writing, final approval of manuscript; Umang Gada: manuscript writing, final approval of manuscript; Alexander Montes: manuscript writing, final approval of manuscript; Allison Magnuson: manuscript writing, final approval of manuscript; Sule Yilmaz: manuscript writing, final approval of manuscript; Eva Culakova: manuscript writing, final approval of manuscript; Sarah Strause: manuscript writing, final approval of manuscript; Charles Kamen: manuscript writing, final approval of manuscript; Marie Flannery: manuscript writing, final approval of manuscript; Karen Mustian: manuscript writing, final approval of manuscript; Gary Morrow: manuscript writing, final approval of manuscript; Supriya Mohile: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript; Kah Poh Loh: conception/design, collection and/or assembly of data, manuscript writing, final approval of manuscript

Funding

The work was supported by the National Cancer Institute at the National Institutes of Health (UG1CA189961, T32CA102618, and R00CA237744 to K.P.L.; K24AG056589 to S.M.; K76AG064394 to A.Ma.; and the Wake Forest NCORP Research Base grant UG1CA189824). The content of this report is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of interest

K.P.L. has served as a consultant to Pfizer and Seagen and has received honoraria from Pfizer. All other authors have no relevant conflicts of interest to report.

Data Availability

Data can be requested from the NCORP Research Bases with approval from the Landscape Committee.

References