More care needed for cancer caregivers

W then ophthalmologist and co-founder of Glaucomflecken LLC, William Flanary, MD, suffered two separate, unrelated bouts of cancer and then cardiac arrest, his wife served as his primary caregiver. While Dr Flanary received the medical attention he needed, Kristin Flanary, also known as Lady Glaucomflecken, co-founder and marketing director of Glaucomflecken LLC in Portland, Oregon, was left frazzled and worn down. “We discovered there’s a big discrepancy between how closely we look at how patients are doing in terms of distress versus how closely we look at how caregivers are doing.”

She is not alone in her view. It is well-accepted that cancer causes many physical, emotional, and financial burdens not only for patients, but for their caregivers as well. A new observational study has confirmed that caregivers’ needs are often overlooked, making them vulnerable.

The study by researchers at Wake Forest School of Medicine in Winston-Salem, North Carolina, appears in the Journal of the National Cancer Institute (doi:10.1093/jnci/djad198).

According to study authors, what prompted the creation of this study was the growing recognition that there was a need for better integration of caregivers into patient-centered cancer care, but to do so research was needed to evaluate the most pressing caregiving burdens and to develop strategies to ease these burdens. They noted that caregivers’ experience symptoms of at least moderate depression, anxiety, worry, and stress that can hinder their ability to help with the patient’s coping and functioning. “The practice of clinic-level distress screening may be one opportunity to improve the assessment and management of caregiver concerns,” they wrote.

For the study, the researchers worked with Wake Forest University’s NCI Community Oncology Research Program (WF NCORP) Research Base in Winston-Salem, North Carolina. NCORPs are part of a network for clinical trials and cancer care delivery research in community oncology clinics nationwide. “There are approximately 1,000 distinct sub-affiliates within 46 NCORP affiliates, many of which cluster together in organizational units or practice groups with common resources, providers, and operations,” they wrote. Data collection took place between January 2019 and June 2020.

The surveys were given to the staff member identified as the most knowledgeable about supportive care services, distress screening, and management for oncology patients at their institution. For this study, the researchers referred to them as supportive care leaders (SCLs.)

Key factors the researchers collected included the number of oncology providers, academic affiliations, the practice setting (in-patient, outpatient, freestanding outpatient, or private clinic) whether it was single or multi-specialty group, hospital affiliations, patient demographics (including age, sex, race, and ethnicity), and whether patients were enrolled in Medicaid and/or Medicare. Factors specific for caregiver included whether there was an existing system to identify a primary caregiver, whether or not they attended medical appointments with the patient.

If the primary caregivers were known, when and at which settings they attended, such as hospital-wide in-patient, medical oncology outpatient, radiation oncology outpatient, surgical oncology outpatient, palliative care, hospice, or other, was also collected. Also noted were where they attended with the patients, at diagnosis, during treatment, at the end of treatment or discharge, or during referral to other services, such as palliative care or hospice.

Those answering the survey were also asked if they ever screened for distress in caregivers. If they did, details such as when they were screened, and whether they attended patient appointments or not were also collected. Finally, SCLs were also asked to identify patients for their level of distress based on their specific type of cancer.

Of those who responded to the survey, 37 were social workers, 22 were either practice administrators, clinic manager, or staff managers, and 15 were psychologists or other mental health professionals. Of the 133 practice groups, 91 offered inpatient services, 91 offered an outpatient clinic on a hospital campus, and 64 offered a freestanding outpatient clinic or private group/practice. Only nine of the practices had an academic affiliation, while 40 identified as a safety net hospital and 16 were affiliated with a critical access hospital.

One hundred eleven practice groups (83.5%) provided answers to the caregiver questions for the study. A majority of respondents (64.9%; 72 of the 111) reported that their practices included identification and documentation of informal caregivers, with 63.8% of the 72 practices saying they recorded the information in their electronic health records. However, while 92.5% said that they screen patients, only 16% routinely screen caregivers for distress.

In addition, although the researchers reported that distress management strategies for patients and caregivers were readily available, only 12.6% identified, screened, and had offered at least one referral strategy for caregivers reporting distress while 90.6% of centers routinely screened and had at least one referral strategy for the patients.

The most commonly used caregiver distress screening tool was a single-item distress scale ranging from 0–10. The second most common tool was the National Comprehensive Cancer Network (NCCN) Distress Thermometer and Problem List, a distress rating scale with follow-up questions on whether emotional or physical maladies are sources of distress, and the Patient Health Questionnaire (PHQ), a multipurpose instrument for screening, diagnosing, monitoring, and measuring depression severity.

The most common strategies for managing caregivers with distress included referring them to an onsite counselor or mental health professional, to a suitable support group, and simply offering aid information such as reading material and websites.

Lead study author, Chandylen Nightingale, PhD, MPH, an assistant professor in the department of social sciences and health policy at the Wake Forest University School of Medicine in Winston Salem, North Carolina, says that the study breaks new ground by providing important systems- level data that were previously lacking and can help cancer centers implement strategies for greater caregiver needs in the future. “This is the first study to show national statistics using NCORP clinics how many practice groups are screening caregivers for distress. These data highlight a significant gap in how we are supporting caregivers and can also serve as a baseline to monitor progress moving forward.”

Jennifer A. Schrack, PhD, a professor and the director of the Center on Aging & Health at Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland, says that as the cancer population ages, caregiving is an increasingly important area of research. “What’s more, screening caregivers for distress is important to helping maintain patient health and safety. Distress management strategies are under-communicated and thus are likely underutilized,” she says. “Identifying patient caregivers and openly communicating with them about potential distress may enhance uptake … or identify barriers to why (available) resources are not being used.”

Kristin Flanary, who was formally trained in cognitive neuroscience and social psychology before embarking on her career in marketing and communications, has become a vocal advocate for greater caregiver support, noting that their needs are a “blind spot” of the overstretched health care system that needs to be addressed. “Naturally, the patient gets most of the attention—and rightly so, but I do use the term ‘co-patient’ and ‘co-survivor’ for people who are closely linked to the patient. But clinicians sometimes forget that the caregiver is also going through this illness experience,” she says. “It’s happening to them too, and disrupts their life in enormous ways.”

Dr Nightingale says that improving caregiver distress screening does not have to be a burdensome or complex system. for example, a 0–10 “thermometer” scale with one question could be a starting point. “We clearly have a lot of work to do with identifying caregivers who are distressed so that we can connect them with services they need,” she says. “It will be important to have collaboration between our clinicians and researchers so that we can design caregiver programs at the system and individual levels that provide support for this vulnerable population.”