OBJECTIVES : To examine depression and anxiety prevalence and health-related quality of life (HRQoL) in cancer caregivers.

METHODS : The National Health and Wellness Survey (NHWS), a nationally-representative Internet survey of adults (≥18 years), was linked to a large US ambulatory electronic health records (EHR) database using a HIPAA-compliant matching algorithm. The study population included NHWS respondents between 2015-2018 who reported being a caregiver of cancer patients and those who reported not being a caregiver. Prevalence of depression and anxiety among caregivers were estimated using self-reported physician diagnoses and ICD-10 codes in the EHR. Analysis of variance and Chi-squared tests were used to compare depression (Patient Health Questionnaire 9-item (PHQ-9)) and anxiety (Generalized Anxiety Disorder 7-item (GAD-7)) severity and HRQoL (SF-36v2 physical component summary (PCS) and mental component summary (MCS)) between caregivers and non-caregivers.

RESULTS : Of 13,928 NHWS respondents linked to EHR data (mean age = 51.6 years, 64.3% females, 78.4% White), 298 (2.1%) reported being caregivers to cancer patients. The prevalence of depression and anxiety were 38.9% and 36.2% using self-reported diagnoses and 18.8% and 17.6% based on EHR diagnoses. Compared with non-caregivers, cancer caregivers were more likely have generalized anxiety disorder (33.8% vs 14.0%, p < 0.001), based on the GAD-7. Cancer caregivers also reported greater severity of depressive symptoms based on the PHQ-9 and were more likely to have mild (24.2% vs. 18.8%), moderate (15.5% vs 8.1%), and severe (18.0 % vs. 7.0%) depression (all p < 0.001), compared with non-caregivers. Compared with non-caregivers, cancer caregivers reported significantly lower MCS (43.5 vs. 48.1, p < 0.001) and PCS (46.3. vs 49.0, p < 0.001).

CONCLUSIONS : Cancer caregivers reported poorer HRQoL and were more likely to report experiencing anxiety and depressive symptoms. Linking data enabled assessment of both self-reported and clinical diagnoses to characterize burden among cancer caregivers.