Caregiver distress: Caring for those who care for our patients.
Abstract
11115 Background: Gynecologic cancers cause high physical and psychosocial strain, worsened by unmet social determinants of health (SDOH) in cancer care. Caregivers help patients access and complete treatment, and increased caregiver distress, especially in vulnerable populations, is linked to worse patient outcomes in chronic illnesses. This study aimed to assess caregiver distress and SDOH in a diverse gynecologic cancer population, understand the relationship between caregiver and patient distress, explore how caregiver distress evolves during chemotherapy, and examine its effect on short-term patient outcomes. Methods: A prospective pilot study was conducted of patients starting chemotherapy for gynecologic cancer and their self-identified caregivers at a single academic site after IRB approval. Patient distress was measured with the NCCN Distress Thermometer. Caregivers completed the Modified Caregiver Strain Index (MCSI) and SDOH questionnaires at enrollment (T0) and three months after chemotherapy initiation (T3). Descriptive statistics, χ² analyses, and linear regression analyzed differences between high- and low-distress caregivers and changes between time points. Results: Between 12/2023 and 06/2024, 60 patients and 38 caregivers enrolled. Patients’ mean age was 62, with 27% identifying as Black and 37% as Hispanic. Most (72%) were starting chemotherapy for initial treatment of uterine (47%), ovarian (32%), cervical (20%), and vulvar (1.6%) cancer, and 73% had stage III/IV disease. Caregivers were 63% male, 40% Hispanic, 24% Black, and 26% over age 65. Almost 40% of caregivers did not live with their patient, and 27% cared for others, including 80% for children. Nearly 40% had incomes under $50,000; only 13.2% had paid job-related support. At T0, 77% of patients reported high distress, decreasing to 70% at T3. Caregivers of high-distress patients were younger, working full-time, and had lower incomes. At T0, 42% of caregivers reported high distress, increasing to 66% at T3. MCSI scores rose significantly from 5.84 at T0 to 9.84 at T3 (p<0.001). At T0, 63% of caregivers screened positive for ≥1SDOH domain, rising to 80% by T3. Caregivers with ≥1 SDOH domain at T3 were more likely to experience increased distress (p=0.037). Linear regression showed caregivers with one SDOH domain had MCSI scores 3.69 points higher (p=0.111); those with ≥2 domains scored 5.60 points higher (p=0.024). No differences were found in patient outcomes based on caregiver MCSI scores. Conclusions: Caregiver distress and SDOH needs increase significantly during the first months of chemotherapy for gynecologic cancer. Distress is also more pronounced in caregivers with greater SDOH needs. Long-term studies are needed to evaluate caregiver distress and its impact on patient survival. This study highlights the importance of monitoring caregiver well-being and addressing SDOH through targeted interventions.
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (13)
Abigail Smith Zamorano
UTHealth Houston, Houston, TX
Joe Haydamous
UTHealth Houston, Houston, TX
Jorge Cervantes
UTHealth Houston, Houston, TX
Anna Mary Brown
Aspirus Regional Cancer Center, Wausau, WI
Anna Jo Bodurtha Smith
University of Pennsylvania, Philadelphia, PA
Shearwood McClelland
Stephenson Cancer Center, Departments of Radiation Oncology and Neurological Surgery, The University of Oklahoma College of Medicine, Oklahoma City, OK
Joseph A. Lucci
UTHealth Houston, Houston, TX
Elizabeth Nugent
UTHealth Houston, Houston, TX
Rosa Guerra
UTHealth Houston, Houston, TX
Lavanya Palavalli Parsons
UTHealth Houston, Houston, TX
Diego Aviles
Judith Ann Smith
UTHealth Houston, Houston, TX
Jose Alejandro Rauh-Hain
The University of Texas MD Anderson Cancer Center, Houston, TX