Financial burden and quality of life of informal caregivers of patients with wet age-related macular degeneration

PURPOSE: The purpose of this research is to quantify the cost burden, care times and the impact on the quality of life (QoL) of informal caring relatives caring for patients with wet age-related macular degeneration (wet AMD). Moreover we investigated the impact of care times on the QoL. METHODS: Through a specifically designed questionnaire, 150 caring relatives were interviewed retrospectively on all accrued financial costs, caring times incurred and the current QoL, assessed by a Visual Analogue Scale for happiness (VAS). RESULTS: The caring time incurred was on average 6.4 ± 8.5 (mean +/- SD) hours per week. The QoL was on average rated at 6.7 ± 1.9 on a ten point scale. Financial strain was incurred by the direct non-medical costs of on average € 405 ± 1104 and the direct medical costs of on average € 134 ± 340 per year. Indirect costs were stated by two caregivers as amounting to € 2400 and € 6000 net income loss per year respectively. Caregivers of privately insured patients with wet AMD carried a financial cost burden which was up to six times higher than caregivers of patients who were on state insurance while showing the same visual acuity. CONCLUSION: The evaluation shows that caregivers of privately insured patients with wet AMD have higher costs than caregivers of patients with state insurance coverage. This burden seems to be a factor to be considered independently since it does not appear to have any relation to patients AMD acuity.