Economic and Humanistic Burden of Visual Impairment and Blindness in Patiens and Their Caregivers with Retinitis Pigmentosa or Leber Congenital Amaurosis (E-BIRDS Study)

OBJECTIVES: Estimate the direct and indirect cost of visual impairment or blindness due to RP and LCA

METHODS: cross sectional study with direct data collection using a telephone survey. For patients under 18 years old, the questionnaire was answered by their parents’ or tutors. Costs are reported in mean euros/years and (SD)

RESULTS: Patients reported to expend 16,056.5 €/year (78,314.5) in low-vision aids/adaptations. Most expenses were related to optical aids. Low-vision aids/adaptations related with visual functions 399.5€/year and other low-vision aids/adaptations as electronic devices, high-intensity lamps or handheld magnifiers 196.1 (384.4) €/year. Caregivers reported to expend 1,040.9 €/year (2,987.2) in low vision aids/adaptations for the patient.

Most patients did not have a paid caregiver (82.9%). Caregivers use to be in 47.4% a family member (36.8% the spouse). 70.7% of the patients were not receiving financial help related to their low vision or blindness, and those who did, this came mostly from the government (33.3%). Absenteeism and presenteeism was reported by 8.8% and 24.4% respectively and the percentage of overall work impairment due to health was 21.9% (32.7). Depression 85.4% and anxiety 92.7% due to low vision/blindness impairment were the most reported stress factors.

Among caregivers 45.5% considered their social life, mental health and finances were affected.

CONCLUSIONS: The low personal cost of medical services, despite its high usage rates, suggest that these costs we financed by the NHS. Our study also showed the serious humanistic burden of patients with RP and LCD, which was based in external barriers, their vision loss severity, limitations in daily life activities, and restrictions in their participation within the society. Finally, this study showed the vulnerable position of caregivers in Spain, which are mostly unpaid for their care tasks and are exposed to a high psychological burden.