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Family caregivers can and should be integrated into the care of gynecological cancer patients, said authors of a study of evidence-based caregiver protocols.

Although cancer patients increasingly rely on family caregivers to provide long-term, sometimes intensive, care, they often remain outside the actual delivery of care. The Caregiver Advocacy, Research, and Education (CARE) Center at the University of Pittsburgh Hillman Cancer Center Gynecologic Oncology Program, launched in 2019, is a novel nurse-led academic-clinical partnership to support family caregivers of gynecological cancer patients.

In the study in , Teresa Hagan Thomas, PhD, RN, of the university's School of Nursing, and colleagues describe the CARE Center protocols, which include strategies to identify caregivers, assess their unmet needs and distress, and provide tailored support.

The authors were not available for comment, and the answers here are from the text of the report.

What does the study add to the literature?

Our team designed protocols that bridge the self-management care guides and previous research interventions into the clinical workflow of inpatient and outpatient gynecologic oncology care settings. We deliberately focused on integrating the protocols into the clinical workflow rather than an effectiveness trial in response to clinical leadership priorities to meet the critical demand for caregiver support within the gynecologic oncology setting.

The protocols were successfully implemented, with 57% of identified caregivers completing an assessment and 41% receiving tailored support.

The Family CARE Center is one of the first to systematically identify, assess, and support family cancer caregivers as a part of routine care. Our initial results demonstrate high reach within the clinic and the ability to provide tailored support for caregivers' multifaceted needs.

What are the highlights of the findings?

For 3½ years (November 2019 to June 2023) a total of 1,250 caregivers were identified through referrals, new patient outreach, and inpatient visits. Of those, 706 caregivers (56.5%) were assessed through a needs-based evaluation, and 515 (41.2%) received tailored support. Caregivers were mostly men (53%).

The mean score for distress of caregivers was 4.4 out of 10, which was moderately associated with caregiver needs, including maintaining emotional and physical health and managing patient symptoms.

Caregivers' most frequent needs were related to managing patient symptoms, receiving information about patients' treatment and cancer, and maintaining their emotional health as a caregiver.

Caregivers who are female, of younger age, have children at home, or are caring for their daughters are at the highest risk for distress. Cancer centers should consider implementing supports that target the needs of family caregivers, including the provision of evidence-based, tailored support.

Why is there a critical need for caregiver self-management support in gynecologic oncology care?

Caregivers are at increased risk for stress-related psychological and physical health problems throughout the cancer treatment trajectory from diagnosis through bereavement or survivorship. Although awareness of caregivers' need for increased training and recognition has increased over the previous decade, the availability of evidence-based clinical care focused on the needs of family caregivers remains inadequate.

A found that a quarter of cancer centers in the U.S. have no structured, coordinated caregiver programs and those that did mostly had information and referral services only. Programs in noncancer centers that have formal family caregiver structures support caregivers' unmet needs and healthcare access.

What were the challenges in implementing such support?

These included maximizing the impact and ensuring that the protocols positively affect caregivers and patients. First, the initial needs assessment provided a snapshot of distress and key areas wherein to provide support, but failed to help CARE Center staff prioritize caregivers at highest risk for poor outcomes over time. A second challenge realized during the first iteration of protocol implementation was the need to create processes to focus staff time and effort on the caregivers most at risk for poor outcomes.

Third, documentation of CARE Center activities is a persistent issue because of legal and privacy issues of charting on caregivers. Finally, CARE Center protocols lack specific ways to handle patients who do not have caregivers or caregivers who have strained relationships with patients. These situations require additional attention to ensure patients and caregivers are getting tailored support.

What are the next steps in this research?

Future research steps include collecting longitudinal outcome data to examine the impact of protocols and identifying the most appropriate patient and caregiver outcomes that address clinical and research priorities.

What is your main message for practicing oncologists?

The Center's protocols have successfully brought caregivers into the care continuum and become an integral part of the gynecologic oncology services within the cancer center. Although future work will assess the effectiveness and implementation of these protocols, they provide key insights into how cancer centers can feasibly provide caregiver support within clinical cancer care.

Read the study here.