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Although distress management strategies are widely available, rates of caregiver distress screening were low among oncology clinics across the United States.

A study in the Journal of the National Cancer Institute indicated that most oncology practices conduct routine psychosocial distress screenings and implement effective management strategies for patients with cancer, but only a small number of practices also assess distress in family members and loved ones who act as caregivers.

“The role of the caregiver is incredibly important but also very challenging,” wrote the study author Chandylen L. Nightingale, PhD, in a corresponding press release. “Caregiver well-being is crucial because there is evidence to suggest that happy and healthy caregivers provide better support and care to loved ones, potentially leading to better patient outcomes and even reduced burden for healthcare systems.”

“Building on our prior research, the purpose of this study was to provide an in-depth assessment of the timing, methods, and infrastructure used in community oncology practices to support the identification and documentation of adult caregivers during cancer care, screening patients and caregivers for distress, and management of patient and caregiver distress,” Dr. Nightingale and colleagues wrote.

The researchers conducted a cross-sectional, observational study to investigate the characteristics of community oncology practice groups linked with identifying caregivers. Between 2019 and 2020, Dr. Nightingale and colleagues performed an online survey involving 111 community oncology clinics across the United States.

The researchers assigned a supportive care leader to each clinic to observe whether measures were employed to identify a primary caregiver for each patient and screen for distress. Each clinic also provided data on its approach to assist patients and caregivers.

Low Rates of Caregiver Screening

A total of 64.9% of supportive care leaders reported routine identification and documentation of informal caregivers, with 63.8% recording this information in the EHR. However, while 92.5% of practices routinely screened patients, only 16% consistently screened caregivers for distress.

Survey results revealed that oncology practices with a free-standing outpatient clinic (OR, 0.29; P=0.0106) and academic affiliations (OR, 0.01; P=0.04) were less likely to detect and document caregivers in the EHR, while practices with a higher volume of oncologists were more likely to document information about caregivers.

While strategies to manage distress for caregivers and patients are extensively available, only 12.6% of surveyed clinics regularly identified caregivers and offered at least one referral to those experiencing distress. By contrast, clinics provided distress management services to 90.6% of patients.

Greater Efforts Needed

“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,” Dr. Nightingale and colleagues concluded.

In the press release, Dr. Nightingale added that measures for screening caregivers for distress do not have to be complicated tasks. She suggested that oncology clinicians use “a single-item distress thermometer, which is one question on a scale of 0 to 10.”

“We need to better understand the unique barriers in community oncology settings that are preventing systematic screening for caregivers,” Dr. Nightingale and colleagues added.

The researchers also emphasized the necessity for additional research, advocating for research efforts to identify barriers to caregiver distress screening and developing measures to address these barriers. Ongoing efforts are crucial to making distress screening and management strategies more accessible to caregivers of patients with cancer, thereby enhancing their well-being.