Socio-economic characteristics of patients with generalized retinal dystrophy in Denmark

Abstract

Purpose: To examine socio-economic characteristics of patients with generalized retinal dystrophy in Denmark.

Methods: Cross-sectional population-based study with analysis of socio-economic characteristics including income, education, employment status and civil status in 2285 patients from the Danish Retinitis Pigmentosa Registry and 228,500 control subjects matched by age and gender. Demographic and socio-economic data were retrieved from Statistics Denmark. Differences between cases and controls were estimated using conditional logistic regression.

Results: On 1 January 2012, 2285 patients with a Danish civil registration number were registered as having a generalized retinal dystrophy. At the age of 40 years, less patients than controls had a high education (odds ratio (OR), 0.51; 95% confidence interval (CI95), 0.41-0.62), a high income (OR, 0.21; CI95, 0.17-0.26) and were married (OR, 0.39; CI95, 0.33-0.45). More patients than controls were pensioners (OR, 6.04; CI95, 5.23-6.97).

Conclusions: We found that patients with generalized retinal dystrophy differed significantly from a matched control group on several socio-economic characteristics. The differences were more pronounced in patients with systemic involvement and patients with an early age at disease presentation. The socio-economic inequalities of this group of blinding diseases emphasize the importance of rehabilitation and need for a substantial and multidisciplinary support from the healthcare, educational and social systems.

Keywords: epidemiology; generalized retinal dystrophy; retinitis pigmentosa; socioeconomic characteristics.