Temporal trends in the epidemiology of childhood severe visual impairment and blindness in the UK

BACKGROUND/AIMS: Understanding temporal trends in childhood visual disability is necessary for planning and evaluating clinical services and health policies. We investigate the changing epidemiology of severe visual impairment (SVI) and blindness (BL) in children in the UK in the 21st century. METHODS: Comparative analysis of two national population-based epidemiological studies of incident childhood SVI/BL (ICD-10 definition; visual acuity worse than 1.0 LogMAR in the better eye). We carry out comparative analysis of studies conducted in 2000 and 2015 using identical methods. RESULTS: Overall annual and cumulative incidence rates remained broadly stable in 2015 at 0.38 per 10 000 (95% CI 0.34 to 0.41) for 0-15 years old and 5.65 per 10 000 (5.16 to 6.18) by 16 years, respectively, and with annual incidence in infancy (3.52 per 10 000, 3.13 to 3.97) remaining considerably higher than any other age. Mortality among children diagnosed in infancy declined (from 61.4 to 25.6 per 1000), despite an increase (from 77% to 84%, p=0.037) in the overall proportion with significant non-ophthalmic impairments/disorders. The relative contribution of all the main groups of disorders increased over time, most notably cerebral visual impairment (from 50% to 61%). Aetiological factors operating prenatally continued to predominate, with an increased relative contribution of hereditary conditions in all children (from 35% to 57%, p<0.001). The substantially elevated rates for any ethnic minority group and those born preterm were unchanged, with amplification of increased rates associated with low birth weight. CONCLUSION: The changing landscape of healthcare and increased survival of affected children, is reflected in increasing clinical complexity and heterogeneity of all-cause SVI/BL alongside declining mortality

Health, education, and social care provision after diagnosis of childhood visual disability

Aim: to investigate the health, education, and social care provision for children newly diagnosed with visual disability. Method: this was a national prospective study, the British Childhood Visual Impairment and Blindness Study 2 (BCVIS2), ascertaining new diagnoses of visual impairment or severe visual impairment and blindness (SVIBL), or equivalent vision. Data collection was performed by managing clinicians up to 1-year follow-up, and included health and developmental needs, and health, education, and social care provision. Results: BCVIS2 identified 784 children newly diagnosed with visual impairment/SVIBL (313 with visual impairment, 471 with SVIBL). Most children had associated systemic disorders (559 [71%], 167 [54%] with visual impairment, and 392 [84%] with SVIBL). Care from multidisciplinary teams was provided for 549 children (70%). Two-thirds (515) had not received an Education, Health, and Care Plan (EHCP). Fewer children with visual impairment had seen a specialist teacher (SVIBL 35%, visual impairment 28%, χ2 p &lt; 0.001), or had an EHCP (11% vs 7%, χ2 p &lt; 0.01). Interpretation: families need additional support from managing clinicians to access recommended complex interventions such as the use of multidisciplinary teams and educational support. This need is pressing, as the population of children with visual impairment/SVIBL is expected to grow in size and complexity. What this paper adds: one year after visual disability diagnosis, one in three children had not received the recommended care from a multidisciplinary team. Two-thirds had not yet received the recommended Education, Health, and Care Plan. There is an under-provision of recommended care, despite significant and complex need.</p