Relatives’ quality of life and psychological disturbance: a new concern of SLE management
AIMS Systemic lupus erythematosus (SLE) mostly affects young women, adversely affecting their quality of life (QOL). Caregivers may experience caregiver burden (CGB), and it may lower the quality of their relationship. Herein we studied caregiving and CGB and their effects on QOL and relationships in SLE. METHODS We recruited 10 dyads from the Lupus Clinic. Data collected included demographics, CGB (CGB Scale, screen for CGB), QOL (SF-36) and the quality of the dyadic relationship (Dyadic Adjustment Scale (DAS)). We calculated correlation coefficients for associations between (i) CGB and (ii) dyadic QOL or DAS. RESULTS The mean (± SD) age of SLE patients was 35.2 (± 9) years and of caregivers was 37.3 (± 9.64) years. The mean (± SD, min-max) total CGB score was 9.1 (± 5.8, 0-19). The caregiver's QOL correlated strongly with some of the domains of the patient's QOL. The SLE-related CGB was associated with the caregiver's own QOL and their SLE partner's QOL. The dyadic DAS was linked to the patient's QOL. CONCLUSIONS Because (i) CGB in SLE is associated with the caregiver's own QOL and with their SLE partner's QOL, and because (ii) the dyadic DAS score is linked primarily to the patient's QOL, then to optimize patient health outcomes and to decrease CGB, focus should be not only on the patient but should include the dyadic unit.Significant findings: To optimize patient outcomes of SLE patients, focus should be on the dyadic unit. CGB in SLE is associated with the caregiver's own QOL and with the SLE partner's QOL, making it crucial to study this relationship in more detail.