Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study
Purpose The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments. Methods Medical, psychological and pedagogical records of Swedish children with congenital or early in...
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| Published in: | Acta ophthalmologica (Oxford, England) Vol. 96; no. 3; pp. 295 - 300 |
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| Main Authors: | , , , |
| Format: | Journal Article |
| Language: | English |
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| ISSN: | 1755-375X, 1755-3768, 1755-3768 |
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| Abstract | Purpose
The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.
Methods
Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988–2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.
Results
A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.
Conclusion
In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD. |
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| AbstractList | PurposeThe aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.MethodsMedical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988–2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.ResultsA total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.ConclusionIn children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD. Purpose The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments. Methods Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988–2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement. Results A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia. Conclusion In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD. The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988-2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD. The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.PURPOSEThe aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988-2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.METHODSMedical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988-2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.RESULTSA total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD.CONCLUSIONIn children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD. The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments. Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988-2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement. A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia. In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD. |
| Author | Verdier, Kim Löfgren, Stefan Fernell, Elisabeth Ulla, Ek |
| Author_xml | – sequence: 1 givenname: Kim orcidid: 0000-0001-8576-0153 surname: Verdier fullname: Verdier, Kim email: kim.deverdier@spsm.se organization: Swedish National Agency for Special Needs Education and Schools – sequence: 2 givenname: Ek surname: Ulla fullname: Ulla, Ek organization: Stockholm University – sequence: 3 givenname: Stefan surname: Löfgren fullname: Löfgren, Stefan organization: Karolinska Institutet – sequence: 4 givenname: Elisabeth surname: Fernell fullname: Fernell, Elisabeth organization: University of Gothenburg |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/29168313$$D View this record in MEDLINE/PubMed https://gup.ub.gu.se/publication/260069$$DView record from Swedish Publication Index (Göteborgs universitet) http://kipublications.ki.se/Default.aspx?queryparsed=id:138142316$$DView record from Swedish Publication Index (Karolinska Institutet) |
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| Copyright | 2017 Acta Ophthalmologica Scandinavica Foundation. Published by John Wiley & Sons Ltd 2017 Acta Ophthalmologica Scandinavica Foundation. Published by John Wiley & Sons Ltd. Copyright © 2018 Acta Ophthalmologica Scandinavica Foundation |
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| SubjectTerms | Adolescent Age Distribution Anophthalmia Atrophy Autism autism spectrum disorder Blindness Blindness - epidemiology Blindness - etiology Blindness - rehabilitation causes Child Child Development Child, Preschool Children Cognitive ability Congenital Abnormalities Congenital diseases developmental outcomes Female Follow-Up Studies Forecasting Gestational age Humans Hypoplasia Incidence intellectual disability Leber congenital amaurosis Male Microphthalmia Neurodevelopmental disorders Neurological diseases Optic nerve Population Population studies Population Surveillance Population-based studies Prevalence Psychiatry Psykiatri Retinopathy Retrospective Studies Risk Factors Sex Distribution Sweden - epidemiology Visually Impaired Persons - statistics & numerical data |
| Title | Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study |
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