VOCAL (Views of Ovarian Cancer Patients and Their Caregivers-How Maintenance Therapy Affects Their Lives) Study: Cancer-Related Burden and Quality of Life of Caregivers

OBJECTIVES: Caregivers for patients with ovarian cancer (OC) often carry a considerable emotional and financial burden. This analysis evaluated sociodemographic characteristics and cancer-related burden in caregivers of patients with OC.

METHODS: Adult caregivers of US patients with OC identified through patient advocacy groups, physicians, and panel groups completed online/paper surveys (English/Spanish). Outcomes included caregiver responsibilities, human impact (Zarit burden interview questionnaire), health-related quality of life (CARER-QoL-7D, EQ-5D-3L questionnaires), work impact, and financial impact.

RESULTS: Caregivers (n=80) were diverse in age (mean=47.3;range=19–75), patient treatment (surveillance=42%; IV treatment=25%; daily pills=23%; chemotherapy=10%), and ethnicity (three most common:White=55%, Black=20%, Hispanic/Latino=10%). They were mainly partners/adult children of patients (68/80;85%). Most caregivers reported working/studying (51/80;64%) alongside caring. 6% (5/80) were not working due to caring; they reported being without work for mean=14.2 months (SD=5.6). Despite providing support for mean=26.9 months (SD=31.4), caregivers rarely received financial support (8/80;10%) and most household medical expenses were spent on the patient (mean monthly household medical costs=$263.0[SD=442.7]; patient medical costs=$213.4[277.4]). 25% (20/80) of caregivers changed living arrangements to provide care. Emotional (92%) and logistic (travel=74%; shopping=69%; preparing meals=62%) support were most frequent, often at high/substantial levels (emotional=71%; travel=55%; shopping=53%; preparing meals=40%). Most caregivers who did not live with the patient (15/80;19%) travelled by car (11/15[73%]) and often over 5 miles (8/15[53%]) to provide support. 44/80 (55%) of caregivers reported moderate/extreme anxiety/depression and 26/80 (33%) reported moderate/severe burden of care. Mean CARER-QoL-7D utility score for informal care situation was 73.8(SD=21.4;range=0–100[best–worst informal care situation]), and 42/80 (52%) had no physical health problems.

CONCLUSIONS: Caregivers of patients with OC reported burdens including anxiety/depression, work/financial impact, and quality-of-life impairment. Further investigations are needed to determine effects of specific patient treatments on caregivers and interventions to assist in providing care.