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Established in Britain in the 19th century, the sight impairment register has been the sole means of routinely monitoring the frequency and causes of visual impairment in children to plan services and prioritise research.1 Although not a prerequisite, certification and consequent registration is often the catalyst for statutory assessment of special educational needs. It is also often the portal for accessing social services.2 Certification remains voluntary in the UK, by contrast with similar registers elsewhere. However, considerable effort has recently been directed to addressing previous concerns about incomplete reporting of information and underascertainment of eligible individuals.1 2 We have previously reported incidence and causes of severe visual impairment (SVI) or blindness (BL) and associated mortality3 in a nationally representative group of children with SVI/BL in the UK. We now report on the BL certification status of these children 1 year after diagnosis.
Active surveillance was undertaken, simultaneously but independently, through the British Ophthalmological4 and British Paediatric5 Surveillance Units, whose reporting bases comprise all consultant ophthalmologists and paediatricians, respectively, in the UK. Every month for 1 year (2000), clinicians reported all children aged <16 years who were newly diagnosed as having SVI/BL due to any disorder. Children were eligible if they had a corrected distance visual acuity of worse than LogMAR 1.0 (Snellen 6/60 or equivalent) in the better eye, that is, SVI/BL using the WHO international taxonomy.6 Children were also considered eligible if their acuity could not be measured formally but they had clinical features consistent with SVI/BL (eg, unable to fix or follow a light) or they were eligible for notification to the national registers of sight impairment. This case definition captured all children with sight loss sufficient to interfere significantly with development and/or have major educational implications and was applied in the absence of an existing standard definition of SVI/BL applicable to all children (ie, including those who were too young or for other reasons were unable to perform formal visual function tests). Children with unilateral visual loss and those born outside the UK were ineligible.
Detailed clinical information about each child was collected from reporting clinicians, with BL certification status ascertained at 1 year after diagnosis.
Four hundred and thirty-nine children with newly diagnosed SVI/BL were notified in 1 year. Seventy-seven per cent (336) of these children had additional associated non-ophthalmic disorders and/or other impairments (SVI/BL plus).
All the children reported to the study were eligible for certification as having severe sight impairment, but 5.5% (24/439) had died before this could be completed. Certification information was missing for 5.8% (24/415) of the children. Thus, a year after diagnosis, 61.4% (240/391) of the children had been certified. Certification had been considered but deferred by health professionals in a further 20.9% (82) and by the parents in 3.8% (15) and had been declined by parents in 1.0% (4). There were no significant differences in certification patterns between those with isolated SVI/BL and those with additional impairments, nor by socioeconomic status or ethnicity.
Within a year of diagnosis, certification of severe sight impairment had been completed, was in progress or had been offered to the parents of most of the eligible children in this study, demonstrating recently achieved improvements in ascertainment and completeness of reporting. Despite this and in the absence of an alternative nationally representative source of data, there are serious concerns about the long-term future of the British register.1 Should this system be abandoned in its present form, our findings demonstrate the good epidemiological potential of using clinician-based notification of newly diagnosed children to establish a live register of childhood visual impairment. Electronic linkage to child health records and disability registers would be beneficial and might be facilitated by inclusion of a record of visual disability in a minimum child health core dataset.7
Members of the British Childhood Visual Impairment Interest Group
W Church, Professor J Forrester, D Kindley, A Rennie, (Aberdeen); L Benjamin (Aylesbury); A Mandal (Barnsley); B Enoch (Barnstaple); F Fisher (Bedford); J Bryars, G McGinnity (Belfast); L Butler, M Edwards, M Hocking, J Nycyk, H Willshaw (Birmingham); J Benson (Blackburn); S Kelly (Bolton); J Bradbury, D Day (Bradford); S Vickers (Brighton); R Markham, C Williams (Bristol), A Rauf (Burton Upon Trent); A Vivian (Bury St Edmunds); L Allen (Cambridge); L Beck, M English, C Lane, P Sastry, R Walters (Cardiff); John Ferris, N Price (Cheltenham); M Boodhoo (Chertsey); S Armstrong, J Butcher (Chester); G O'Connor (County Cork); C Dalton (County Kerry); F Dean, C Essex, R Robinson (Coventry); A Thomson (Crewe); R Smith (Devon); S Birks (Dover); R Acheson, D Brosnahan, P Logan (Dublin); G Bedford (Dumfries); C MacEwen, J Young (Dundee); A Barr (Dunfermline); J Cresswell, B Fleck (Edinburgh); A Attenburrow (Elgin); A Quinn (Exeter); P Powell (Farnworth); J Dudgeon, Professor G Dutton, M O'Regam (Glasgow); B Al-Rubeyi (Greenwich); C Hutchinson (Halifax); V Vempali (Harlow); J Duvall-Young (High Wycombe); D Clow (Hornchurch); J Innes (Hull); C Edelsten, R Goble (Ipswich); R Brennan (Kenton); T Blamires (Kettering); L Willshaw (Kilmarnock); D Carmichael, R Doran, N George (Leeds); S Bohin, G Woodruff (Leicester); M Neugebauer (Leighton); A Chandna, D Clark, S Kaye, G Snelling (Liverpool); M Wright (Livingston); J Acheson, W Aclimandos, G Adams, P Bloom, D Calver, C Davey, A Duthie, Professor A Fielder, C Gilbert, N Kayali, Professor P Khaw, G Laing, J Lawson, D Lessing, Professor A Moore, K Nischal, R Ohri, J Raina, K Rantell, I Russell-Eggitt, A Salt, J Sloper, P Sullivan, D Taylor, G Thompson (London); D Heath (Luton); I Dady, R Levy, I Lloyd (Manchester); M Clarke (Newcastle upon Tyne); N Astbury, S Steel (Norwich); R Gregson (Nottingham); B Crofts (Oxford); L Esakowitz (Paisley); N Evans (Plymouth); M Black (Poole); A Evans (Portsmouth); S Clark (Preston); B Billington (Reading); P North (Rochdale); A Zaidi (Rotherham); J Burke, J Chan (Sheffield); L Kneen (Shrewsbury); M Gibbens (Sidcup); R Jones (Slough); H Gaston, P Hodgkins, R Morris (Southampton); I Jalili (Stamford); G Morrice (Stirling); R Brown (Stoke on Trent); S Bruce, P Tiffin (Sunderland); R Leitch (Sutton); D Laws (Swansea); P Burgess (Swindon); A Tandy, J Twomey (Taunton); M Pierse (Tipperary); M Cole (Torquay); P Munyard, A Stockwell (Truro); S Jones (Wakefield); A Dillon, C Noonan, R Thorburn (Warrington); P MacMahon (Waterford); S Thompson (West Bromwich); S Verghese (Whitehaven); A Bradbury (Whittington); D Banerjee (Wigan); J Watts (Winchester); A Shun Shin (Wolverhampton); N Kaushik (Wrexham); R Taylor (York); M Donaldson (Yorkhill).
For the British Childhood Visual Impairment Interest Group (see Appendix)
Funding The study was supported by grants from the British Council for Prevention of Blindness, Children Nationwide and the National Eye Research Centre. This work was undertaken at the Great Ormond Street Hospital/UCL Institute of Child Health that received a proportion of its funding from the Department of Health's National Institute of Health Research Biomedical Research Centres funding scheme. The Centre for Paediatric Epidemiology and Biostatistics also benefits from the funding support from the Medical Research Council in its capacity as the MRC Centre of Epidemiology for Child Health. JSR holds a joint appointment with Moorfields Eye Hospital/Institute of Ophthalmology, University College London, that also received a proportion of its funding from the Department of Health's National Institute of Health Research Biomedical Research Centres funding scheme. PMC is supported by the Ulverscroft Foundation.
Competing interests None.
Ethics approval This study was conducted with the approval of the Institute of Child Health/Great Ormond Street Hospital local research ethics committee, and the data were handled in accordance with extant guidance on data protection.
Provenance and peer review Not commissioned; externally peer reviewed.
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