Abstract P6-05-08: Distress Screening for Family Caregivers of Metastatic Breast Cancer Patients
Authors: Buchanan Ashley , Sarfo Astrid , Badr Hoda 
Published: March 2023

Metastatic breast cancer (MBC) is an incurable disease that affects over 168,000 women in the US. Family caregivers play a critical role in patients’ adjustment to MBC by providing practical and emotional support. However, the extensive involvement of caregivers in patient care places them at increased risk for clinically significant psychological distress symptoms. In fact, research has shown that distress is as prominent for caregivers as it is for patients and that it can adversely affect caregiver support to the patient. Distress screening with appropriate triage and follow-up for psychosocial concerns is recognized by the Institute of Medicine (IOM) and National Comprehensive Cancer Network (NCCN) as critical for ensuring high-quality comprehensive cancer care. However, clinical tools to assist with recognizing caregiver distress are sparse, creating a practical barrier for caregivers to obtain needed psychosocial support. The NCCN Distress Thermometer (DT) is a validated single-item self-report measure that was developed to screen for cancer patient distress. It is often used with the NCCN 42-item Problem List (PL) which identifies sources of distress to help guide providers in making appropriate referrals. Although the DT has been validated for use with caregivers, most adult oncology practices have yet to establish protocols for identifying caregivers with high distress levels. Part of the problem is that many PL items ask about physical and other concerns that are related to either having or undergoing treatment for cancer. Developing a caregiver-focused PL could thus not only improve clinical uptake of distress screening for cancer caregivers, but also enable greater integration of family-centered support services as part of routine cancer care. With these goals in mind, this mixed-methods study sought to inform development of a PL to address the unique concerns of cancer caregivers. Methods: Caregivers of MBC patients completed a short survey containing sociodemographic questions and the NCCN DT. They also participated in semi-structured interviews about their role in symptom management, psychosocial impacts of cancer, and unmet needs. Interviews were audio-recorded and transcribed. The five NCCN problem domains (i.e., physical, emotional, family, practical, and religious/spiritual concerns) that have been identified as sources of distress were used to guide thematic analysis. Results: Nineteen caregivers (63.2% female; 47.4% racial/ethnic minorities) participated. Most were middle aged (M = 54.4, SD = 16.4) and either spouses (42.1%) or adult children (31.6%). Surveys revealed that caregivers had moderate distress levels (M=4.4 out of 10, SD=3.1); 53% exceeded the DT cut-off of 5, warranting further psychological evaluation. In the interviews, caregivers reported an average of 7.7 concerns (Range = 0 to 17 concerns). The most common issues were worry (63.2%), coping with the patient’s emotions (57.9%), providing emotional support to the patient (52.6%) and assisting with activities of daily living (47.9%). Caregivers also expressed problems coordinating care with other family members, feelings of guilt, and unmet needs for information. Caregivers reporting more concerns reported significantly (p&lt;.05) higher levels of psychological distress. Conclusion: Many of the concerns raised by MBC caregivers did not align with the NCCN PL, suggesting that development of a caregiver-specific PL is warranted. Additional study is needed to determine whether such a PL could help to efficiently route caregivers to information and resources matching their needs and ultimately help to alleviate their distress.

Citation Format: Ashley Buchanan, Astrid Sarfo, Hoda Badr. Distress Screening for Family Caregivers of Metastatic Breast Cancer Patients [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-08.