Distress Screening Is Needed — But Uncommon — Among Cancer Caregivers


Most oncology clinics screen for psychosocial distress among patients with cancer, but the same can’t be said for their caregivers, recent research found.

While most oncology practices screen for psychosocial distress in patients with cancer, far fewer do so for cancer caregivers, according to recent research published in the Journal of the National Cancer Institute.

The researchers on the study surveyed 111 practices within the NCI Community Oncology Research Program (NCORP), a network of investigators and cancer care providers across the United States, to determine if they identified caregivers; undergo patient and caregiver distress screening; and distress management strategies.

Findings showed that while a majority (64.9%) of practices reported that they documented informal cancer caregivers, only 16% said that they routinely screened caregivers for distress. Conversely, 92.5% reported distress screenings for the patients.

graph showing the lower percentage of caregivers referred to mental health screening compared to patients

“The role of the caregiver is incredibly important, but it’s also very challenging,” Chandylen Nightingale, assistant professor of social sciences and health policy at Wake Forest University School of Medicine and co-principal investigator of the study, said in a press release. “Caregiver well-being is crucial because there is evidence to suggest that happy and healthy caregivers provide better support and care to their loved ones, potentially leading to better patient outcomes and even reduced burden for our health care systems.”

READ MORE: Caregivers Need to Balance Self-Care While Caring for a Patient With Cancer

Notably, practices with a free-standing outpatient clinic and academic affiliation were less likely to identify and document caregivers in the electronic health record, while practices with a higher volume of oncologists were more likely to record caregiver information.

In the study, the authors mentioned that distress management strategies for caregivers and patients were “widely available.” However, only 12.6% of surveyed oncology practices reported that they routinely identify, screen and provided at least one referral for caregivers experiencing distress. Again, this process was done far more commonly for patients with cancer, occurring in 90.6% of patients.

Nightingale mentioned in the press release, screening for caregiver distress can be as easy as using a distress thermometer where caregivers can rank what they are feeling and experiencing on a scale of 0 to 10.

“We do need to better understand the unique barriers in community oncology settings that are preventing systematic screening for caregivers,” she said. “Our findings suggest that patient

distress screening is widespread among community oncology clinics. However, very few are comprehensively engaging caregivers.”

Moving forward, the research team mentioned that they hope to develop a better understanding of the barriers to caregiver distress screening and how they can make supportive care services more accessible to these individuals.

“Defeating cancer is a team effort, and I commend Dr. Nightingale and the entire team for looking at such an important issue,” said Dr. Ruben Mesa, president of Atrium Health Levine Cancer, executive director of Wake Forest Baptist’s Comprehensive Cancer Center and vice dean for cancer programs at Wake Forest University School of Medicine, in the press release. “The hope is that we can leverage existing processes for patients and translate them to caregivers to make sure we are providing the best possible support for patients across the country who are facing cancer.”

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