Health and social outcomes of children with visual impairment and blindness in the U.K

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IntroductionSevere visual impairment and blindness (SVIBL) in childhood is rare, but confers significant impact on many aspects of development, education and activities of everyday life. The burden in terms of 'sight years lost' is disproportionate in children compared to adult-onset bilateral vision loss as it occurs much earlier in the life-course.National, representative epidemiological data on childhood SVIBL are scarce. The British Childhood Visual Impairment & Blindness Study (BCVIS1), a national surveillance study of SVIBL conducted in 2000, is currently the only study that has published national incidence data on paediatric SVIBL in the U.K. The BCVIS2 - investigating full spectrum visual impairment (i.e. including the category of visual impairment (VI) as well as SVI/BL as studied in BCVIS1) has recently been completed and papers are in progress. I was the Research Assistant on the BCVIS2 study prior to entering the DTP. AimTo explore the health, educational and social outcomes in early adulthood of children diagnosed with full spectrum visual impairment and blindness during childhood and to quantify for the first time the economic burden of childhood SVIBL in the UK. This project is important as it provides baseline survival and cost data that would otherwise be unavailable for children with VI and SVIBL, and is useful to populate the future models for cost-effectiveness analyses of novel treatments or technologies that are required for public funding.MethodsEthics approval will be sought from the NHS Confidential Advisory Group and Health Research Authority research committee to:a) carry out unconsented deterministic linkage of children with SVI/BL identified in the BCVIS1 study (using the partial identifiers: date of birth, postcode and ethnicity for children without a recorded NHS number) to national administrative datasets including the national pupil database (NPD), hospital episodes statistics (HES) and ONS mortality dataset. In addition to the longitudinal analysis of health outcomes, healthcare utilisation data from HES will be used to calculate healthcare costs and determine the cost-of-illness of childhood SVIBL from the healthcare perspective.b) make direct contact with families of members of BCVIS2 cohort (now preschool age) to invite parents to participate in assessing health and social outcomes using standardised questionnaires and in-depth interviews and to obtain further clinical follow up data via their ophthalmologists (to add to one year follow up data already collected via managing ophthalmologists). This is a discipline bridging PhD project which is reflected in my supervisory panel. I will be enlisting experts in the field of child health and administrative data to my panel, but have not listed names as yet as meetings are taking place after they return from Summer annual leave.