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

• Published in: JNCI : Journal of the National Cancer Institute 2024-02, Vol.116 (2), p.324-333
• Main Authors: Nightingale, Chandylen L, Snavely, Anna C, McLouth, Laurie E, Dressler, Emily V, Kent, Erin E, Adonizio, Christian S, Danhauer, Suzanne C, Cannady, Rachel, Hopkins, Judith O, Kehn, Heather, Weaver, Kathryn E, Sterba, Katherine R
• Format: Article
• Language: English
• Subjects: Adult; Caregivers; Humans; Neoplasms - diagnosis; Neoplasms - therapy; Surveys and Questionnaires
• ISSN: 0027-8874; 1460-2105; 1460-2105
• DOI: 10.1093/jnci/djad198

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. 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). 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] = 0.29, P = .0106) and academic affiliation (OR = 0.01, P = .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 = 1.04, P = .02). 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.