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Reporting on Australian childhood visual impairment: the first 10 years

Abstract

Background

Visual impairment is rare but has significant impact on the neurobehavioural development and quality of life of children. This paper presents the key findings from the Australian Childhood Vision Impairment Register, which commenced in 2008 to report on children diagnosed with permanent visual impairment.

Subjects/methods

Families consent to completing a data form related to their child and for contact with the child’s ophthalmologist. Ophthalmologists complete and return a comprehensive data form on the child’s primary and secondary ocular diagnoses, associated disabilities and health conditions, visual acuity and visual fields. Data is stored on a secure database and anonymised data is available to researchers and for planning purposes.

Results

Nine-hundred four children and their families provided informed consent for participation, with 57% males and 43% females. Most children spoke English in their home. Eighty-three percent of children were born full term, with a birth weight of >2500 g (81%). Children were commonly suspected to have visual impairment by a parent, with 68% of families receiving a diagnosis of visual impairment by their child’s first birthday. The most common primary diagnoses were retinal dystrophy (17%), CVI (15%) and Albinism (11%). A secondary diagnosis of infantile nystagmus occurred in 33% of children. Additional disabilities and/or developmental delay were reported for 44% of children. Corrected binocular visual acuity was reported for 75% of children, with moderate visual impairment being most common.

Conclusions

These findings contribute to knowledge of rare diseases affecting the eye and visual pathway and represent Australian childhood visual impairment.

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Fig. 1: The registration process.
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References

  1. Rahi J. Childhood blindness: a UK epidemiological perspective. Eye. 2007;21:1249–53.

    CAS  Article  Google Scholar 

  2. Crewe V, Morgan W, Morlet N, Clark A, Lam G, Parsons R, et al. Prevalence of blindness in Western Australia: a population study using capture and recapture techniques. Br J Ophthalmol. 2012;96:478–81.

    Article  Google Scholar 

  3. Kong L, Fry M, Al-Samarraie M, Gilbert C, Steinkuller P. An update on progress and the changing epidemiology of causes of childhood blindness worldwide. J AAPOS. 2012;16:501–7.

    Article  Google Scholar 

  4. Hatton D, Ivy S, Boyer C. Severe visual impairments in infants and toddlers in the United States. JVIB. 2013;107:325–36.

    Google Scholar 

  5. Ravenscroft J, Blaikie A, Macewen C, O’Hare A, Creswell L, Dutton GN. A novel method of notification to profile childhood vision impairment in Scotland to met the needs of children with visual impairment. BJVI. 2008;26:170–89.

    Google Scholar 

  6. Ojaimi E, Rose K, Smith W, Morgan I, Martin F, Mitchell P. Methods for a population-based study of myopia and other eye conditions in school children: the Sydney Myopia Study. Ophthalmic Epidemiol. 2005;12:59–69.

    Article  Google Scholar 

  7. Pai A, Wang J, Samarawickrama C, Burlutsky G, Rose K, Varma R, et al. Prevalence and risk factors for visual impairment in preschool children the Sydney Paediatric Eye Disease Study. Ophthalmology. 2011;118:1495–500.

    Article  Google Scholar 

  8. Bower C, Rudy E, Callaghan A, Quick J, Cosgrove P, Nassar N. Report of the Birth Defects Registry of Western Australia 1980-2008, 2009. Accessed March 2021. Available from: https://www.wnhs.health.wa.gov.au/-/media/Files/Hospitals/WNHS/Our-Services/State-wide-Services/WARDA/Reports/2009_Annual_Report_of_the_Birth_Defects_Register.pdf

  9. World Health Organization. Preterm Birth, 2018. Accessed March 2021. Available from: https://www.who.int/news-room/fact-sheets/detail/preterm-birth.

  10. The International Fetal and Newborn Growth Consortium for the 21st Century. INTERGROWTH-21st, 2019. Accessed March 2021. Available from: https://intergrowth21.tghn.org/.

  11. Foot B, Stanford M, Rahi JS, Thompson J. The British Ophthalmological Surveillance Unit: an evaluation of the first 3 years. Eye. 2003;17:9–15.

    CAS  Article  Google Scholar 

  12. World Health Organization. International Classification of Disease Version 11 (Mortality and Morbidity Statistics), 2019. Accessed March 2021. Available from: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/1103667651.

  13. Australian Government. National Disability Insurance Scheme Bill. Families Housing Community Services and Indigenous Affairs, 2013. Accessed March 2021. Available from: http://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22legislation%2Fbillhome%2Fr4946%22

  14. Blows S, Murphy E, Martin F, Davies R. Vision screening in preschoolers: the new New South Wales Statewide Eyesight Preschool Screening program. Med J Aust. 2014;200:222–5.

    Article  Google Scholar 

  15. Australian Bureau of Statistics, Birth summary, 2020. Accessed March 2021. Available from: http://stat.data.abs.gov.au/Index.aspx?DataSetCode=BIRTHS_MONTH_OCCURRENCE

  16. Haugen O, Bredrup C, Rødahl E. Visual impairment in children and adolescents in Norway. Tidsskr Nor Legeforen. 2016;136:996–1000.

    Article  Google Scholar 

  17. Rudanko S-L, Laatikainen L. Visual impairment in children born at full term from 1972 through 1989 in Finland. Ophthalmology. 2004;111:2307–12.

    Article  Google Scholar 

  18. Rudanko S-L, Fellman V, Laatikainen L. Visual impairment in children born prematurely from 1972 through 1989. Ophthalmology. 2003;110:1639–45.

    Article  Google Scholar 

  19. Castanys-Muñoz E, Kennedy K, Castañeda-Gutiérrez E, Forsyth S, Godfrey K, Koletzko B, et al. Systematic review indicates postnatal growth in term infants born small-for-gestational-age being associated with later neurocognitive and metabolic outcomes. Acta Paediatr. 2017;106:1230–8.

    Article  Google Scholar 

  20. Robaei D, Kifley A, Gole G, Mitchell P. The impact of modest prematurity on visual function at Age 6 Years. Arch Ophthalmol. 2006;124:871–7.

    Article  Google Scholar 

  21. Day S. Normal and abnormal visual development. In: Taylor D, editor. Pediatric Ophthalmology. Oxford: Blackwell Science; 1997; 13–25.

  22. Graungaard A, Skov L. Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs when the newborn child is severely disabled. Child Care Health Dev. 2006;33:290–307.

    Google Scholar 

  23. Rahi J, Cumberland P, Peckham C. Improving detection of blindness in childhood: the British Childhood Vision Impairment Study. Pediatrics. 2010;126:895–903.

    Article  Google Scholar 

  24. Durnian JM, Cheeseman R, Kumar A, Raja V, Newman W, Chandna A. Childhood sight impairment: a 10-year picture. Eye. 2010;24:112–7.

    CAS  Article  Google Scholar 

  25. Bunce C, Zekite A, Wormald R, Bowman R. Is there evidence that the yearly numbers of children newly certified with sight impairment in England and Wales has increased between 1999/2000 and 2014/2015? A cross-sectional study. BMJ Open 2017;7:1–7.

    Article  Google Scholar 

  26. Bertelsen M, Jensen H, Larsen M, Lorenz B, Preising M, Rosenberg T. Prevalence and diagnostic spectrum of generalized retinal dystrophy in Danish children. Ophthalmic Epidemiol. 2013;20:164–9.

    Article  Google Scholar 

  27. Papageorgiou E, McLean R, Gottlob I. Nystagmus in childhood. Pediatr Neonatol. 2014;55:341–51.

    Article  Google Scholar 

  28. Brodsky MC. Nystagmus in children. In: Pediatric neuro-ophthalmology [book on the Internet]. 3rd edn. New York: Springer; 2017 [cited 2019 July 23]; p. 569–95. Available from: https://www.springer.com/gp/book/9781493933822.

  29. Takeshita B, Lusk K. The visual system. In: Holbrook MC, McCarthy T, Kamei-Hannan C, editors. Foundations of Education. 1 History and theory of teaching children and youths with visual impairments. 3rd edn. New York: American Foundation for the Blind, 2017. 73–113.

  30. Evenhuis H, van der Graff G, Walinga M, Bindels-de Heus K, van Genderen M, Verhoeff M, et al. Detection of childhood visual impairment in at-risk groups. J Pol Pr Intellect. 2007;4:164–9..

  31. Welinder L, Baggesen K. Visual abilities of students with severe developmental delay in special needs education–a vision screening project in Northern Jutland, Denmark. Acta Ophthalmol. 2012;90:721–6.

    Article  Google Scholar 

  32. Lehman S. Children with developmental disability and visual impairment: what information can an ophthalmologist provide to a family and school. Curr Ophthalmol Rep. 2013;1:208–12.

    Article  Google Scholar 

  33. Salt A, Sargent J. Common visual problems in children with disability. Arch Dis Child. 2014;99:1163–8.

    Article  Google Scholar 

  34. Dale N, Sonksen P. Developmental outcome, including setback in young children with severe visual impairment. Dev Med Child Neurol. 2002;44:613–22.

    Article  Google Scholar 

  35. Hyvärinen L, Walthes R, Freitag C, Petz V. Profile of visual functioning as a bridge between education and medicine in the assessment of impaired vision. Strabismus 2012;20:63–8.

    Article  Google Scholar 

  36. Nielsen L, Skov L, Jensen H. Visual dysfunctions and ocular disorders in children with developmental delay. I. prevalence, diagnoses and aetiology of visual impairment. Acta Ophthalmol Scand. 2007;85:149–56.

    Article  Google Scholar 

  37. Bodeau-Livinec F, Surman G, Kaminski M, Wilkinson A, Ancel P, Kurinczuk J. Recent trends in visual impairment and blindness in the UK. Arch Dis Child. 2007;92:1099–104.

    Article  Google Scholar 

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Acknowledgements

ACVIR is fully funded by NextSense. The contribution made by Professor John Ravenscroft to initially establish ACVIR is gratefully acknowledged. The collective and ongoing commitment to ACVIR by NextSense, families, clinicians, and low vision, disability and educational providers is also recognised. Every family and clinician who has returned a data form is thanked. Without this support, reporting would not be possible, and the needs of Australian children with VI may be unrecognised and thus remain unmet. The project supporting this research is solely funded by NextSense Australia.

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The authors agreed that each has made a significant contribution to this paper, including analysis, interpretation, and writing; deciding on the journal for potential publication; reviewing and agreeing on all versions of the paper; agreeing on all changes made at the proofing stage; agreeing to take responsibility and be accountable for the contents of the article; and agreeing to share responsibility for resolving any questions raised about the accuracy and integrity of the published work. SS: 70%, FM: 10%, MF: 10%, HR: 10%.

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Correspondence to Susan Silveira.

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Silveira, S., Martin, F.J., Flaherty, M. et al. Reporting on Australian childhood visual impairment: the first 10 years. Eye 36, 1412–1418 (2022). https://doi.org/10.1038/s41433-021-01656-1

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