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• W2000961897 abstract "Purpose: The aim of the study was to estimate the occurrence, diagnoses and time trends among Norwegian children that have received education in braille from 1967 to 2007. Methods: We used a retrospective population-based study design. The health care system is free for all inhabitants in Norway. We included all children that had received braille education the last four decades. From each student’s record, we abstracted year born, country of birth, gender, year diagnosed, diagnosis, classification of visual impairment and type of reading media. Results: We identified 287 children (137 girls and 150 boys) that had received braille education over the last 40 years. Of these, 262 (91.3%) children were born in Norway, 145 (53.7%) were diagnosed within the first year of life and 59 (20.6%) from age of one to five. The most frequent diagnoses were Retinopathy of Prematurity (ROP), Juvenile Ceroid Lipofuscinoses (JNCL), Lebers Congenital Amaurosis (LCA) and Retinitis Pigmentosa (RP). Among the children, 63% (N = 170) used braille only, 9% (N = 25) braille and print, but priority braille, and 27% (N = 73) braille and print, priority print. The number of children with ROP using braille had a peak in 1977, then the number declined. The number diagnosed with LCA increased from 1987 to 1992. The number of braille users among children diagnosed with JNCL tended to increase substantially after 1992. Conclusion: Braille education seemed to be dependent of trends in diagnoses as well as trends in recommendations from professional educators. Louise Braille (1809–1852) developed a system of dot writing called braille. Even today, the braille system is an important media for reading. Technological advances now make it easier for the blind to print braille and to participate in written communication using the personal computer to display braille. In addition, the users can correct and improve the text using different edit functions. However, the equipment is somewhat expensive. In Norway, the Education Act § 2–14 affirms that each severely, visually impaired student has the right to receive a braille education and the training to use the necessary equipment. To begin a programme of braille education and training, evaluation from competent experts is required. Professional educators may recommend a programme of braille, print or both. Because physical and cognitive impairments may affect the ability to read and write, it is important for professional educators to understand each child’s abilities. In particular, understanding of the aetiology, diagnosis, prognosis, treatment, visual acuities for distance and near, including reading acuity, and visual field are important. Gilbert (2003) claimed that early onset of vision loss may have an impact on psychomotor, social and emotional development. Further, severe loss of vision will often influence the options for education and future employment. Thus, the medical circumstances, along with environmental factors, according to the International Classification of Functioning, Disability and Health (WHO, 2001), may be taken into account to better give each child an adapted learning environment. Childhood blindness is an important health problem (Gilbert et al. 1996). As many as 1.5 million children may be blind worldwide, 72 000 of whom are in Europe, the United States and Japan (Gilbert 1998). The prevalence of childhood blindness in Europe is estimated to be between 0.1 and 0.4 per 1000 children (Kocur & Resnikoff 2002). Further contributing to the burden of childhood blindness is its associated high personal and social costs. A major challenge facing educators of severe visually impaired students is the high volume of visual material which students without visual impairment typically receive as part of their education. Individual strategies to address this challenge are required based on the visual impairment and the student’s communication skills. Reflecting its public health burden, prevention of childhood blindness is a priority of WHO (2000). A good health care system and socioeconomic development seem to be important factors for lowering risk of blindness among children. Prevention and control of avoidable blindness needs to be an ongoing process even in countries with low occurrence of severe visual impairment. Population-based estimates of the frequency of childhood blindness are important for prevention and planning, but few good estimates are available worldwide (Riise 1993; Ezepue 1997; Kocur & Resnikoff 2002; Dandona & Dandona 2003). Most countries do not have National registries for the blind. Norway has no registry, as the national registry for the blind was closed in 1996, partly because of varying efficiency of registration (Riise 1993; Riise et al. 1993) and some objections from blind. It is thus of great interest to get more knowledge about the diagnoses of the children who have received braille education in Norway. To our knowledge, no recent estimates for the occurrence of childhood blindness for which braille use was recommended have been published for Norway or the rest of Northern Europe. Therefore, the aims of this study were as follows: To estimate the occurrence and diagnoses of visual impairment among Norwegian children that had received braille education from 1967 to 2007. To estimate time trends in the causes of visual impairment among Norwegian children using braille. We used a retrospective population-based study design. Our goal was to include all children that had received braille education in Norway the last four decades. In 2009, Norway had about 4.8 million inhabitants, and of these 1.1 million was younger than 18 years old. We used the WHO’s (2007) definition of visual impairment. Blindness was defined as a corrected visual acuity of less than 3/60 (0.05) in the better eye or a visual field 10° (radius) or less. From the early 20th century and until 1995, there were special boarding schools for the blind financed by the Norwegian government. All severe visually impaired children were eligible for referral to these schools. Caused by the geographical distances the children moved from their homes and caregivers, at no cost to the family, when they started the first grade. In 1975, new school reforms were developed. The process to integrate all children regardless of cognitive or physical ability to schools in their home communities started. Gradually, the two national boarding schools, Tambartun and Huseby, became national resource centres (NRC) as a part of the Norwegian Support System for Special education (Statped). Statped provides special educational guidance and support to municipalities and county administrations through a wide range of services. All visually impaired children complete eye examination from ophthalmologists and are thereafter referred to these public services that offered braille education. From 1995, all visually impaired children in Norway were integrated into their local school. Tambartun and Huseby resource centres are responsible to produce and print in braille the required curriculum to children in the Norwegian school system. Each student’s records are kept at his or her resource centre for up to 10 years after the last contact. After 10 years, all records are sent to the national government archive for filing. The records to the student educated at the special boarding schools for the blind are also filed at the national government archive. We chose the period from 1967 to 2007. We identified the children’s name from the class lists from the blind schools and from the records of all children that received braille education from the national resource centres for visually impaired. In addition, we interviewed staff from the boarding schools as well as from the resource centres and teachers travelling to each students’ school. All together, we identified 287 visually impaired children in Norway who had been taught braille during this time period. Of these, 119 children had a record from the national school for the blind (born from 1957 to 1988), and 168 children had a record from one of the two resource centre for the blind (born from 1970 to 2002). Thus, the braille users were born from 1957 to 2002. Only children that were exposed to braille education are included in this study. We reviewed all the school and medical records of the 287 children. We abstracted year born, country born, county of residence, age referred, gender, year diagnosed, diagnosis, classification of visual impairment and braille use. The reading media were classified into three groups: braille only, braille and print (priority braille), and braille and print (priority print). Because of missing information in many records, we are not able to report when the children who were primarily print started using braille. Further, we classified the diagnosis according to Rosenberg et al. (1996). The four groups were sequelae to brain disorders, congenital ocular anomalies, ocular dystrophies and miscellaneous. The coding system and the grading of visual impairment categories followed International classification of diseases (ICD-10) for ophthalmic and systemic diagnoses. We used descriptive statistics to summarize the results. We do not have all variable information from all subjects, because of missing data information in journal. To compare groups, we used Chi-square tests or Fischer’s exact test in the analysis of contingency tables when sample sizes were small. Statistical significance was defined as p-value <0.05. All analyses were performed with the statistical package spss 17.0. To create the graph, we used the sas 9.2 statistical package and R. To account, approximately, for the population of each district, we divided the total cases for the district by the number of resident’s age 1–19 years in the district in 1987, the mid-point of the study period. Because of missing data from four cases, we added 0.8 persons per each health region (four persons divided with five categories of health regions = 0.8). Then, we multiplied by 1000 and calculated the ratio of users to the 1987 population. The Helsinki Declaration was followed. The Norwegian Regional Committee for Ethic in Medical Research and the Ministry of Education and Research approved the study and gave the permission to use the data from each student’s journal. In addition, the directors at the two resource centres for visually impaired gave their permission to carry out the study. We identified 287 Norwegian children whose records indicated that they had received education to learn braille over the last 40 years. This number included 137 girls (47.7%) and 150 boys (52.3%). Of these, 262 (91.3%) were born in Norway, 14 (4.9%) in Asia, 5 (1.7%) in South America, 4 (1.4%) in other European countries and 2 (0.7%) in USA (Table 1). They were all born from the year of 1957 to 2002. Each of the 19 counties in Norway had children who had got braille education during these 40 years. There was no obvious geographical clustering. Each health region had a substantial number of braille users (Table 2). The ratio of the number of users to the 1987 population (mid-point year) of 0- to 19-year-old children was approximately the same across regions, except possibly for the Mid health region, which was slightly larger. This region had a government-owned blind school for children in Norway and was located in Trondheim city. According to the WHO classification, 222 children (77.4%) had profound, near total or total level of visual impairment (Table 1). Of the total group, 145 (53.7%) were diagnosed within the first year after birth, and 59 (20.6%) from the age one to five. There were no association between gender and WHO classification of level of visual impairment (Chi-square = 3.03, df = 6, p = 0.80) or the age of diagnoses (Fischer’s exact test p = 0.92). Table 3 shows the distribution of braille users according to diagnostic categories, principal ophthalmic diagnoses and gender. The five most frequent diagnoses were Retinopathy of Prematurity (ROP) (N = 48), Lebers Congenital Amaurosis (LCA) (N = 28), Juvenile Ceriod Lipofuscinoses (JNCL) (N = 25), Retinitis Pigmentosa (RP) (N = 14) and Optic Nerve Hypoplasia (N = 14). About 76% of the children diagnosed with ROP, LCA and Optic Nerve Hypoplasi were diagnosed before the age of 1 year. Among the children diagnosed with Sequelae to brain disorders, 61% were diagnosed before the age of one, but mean age was 2.5 years. In contrast, no children with RP were diagnosed before age one, but 50% were diagnosed before they were 5 years old. No children with JNCL were diagnosed before age 1; the mean age was 8.5 years. Among the children in this study, 63% (N = 170) used primarily braille, 9% (N = 25) used primarily braille but also print and 27% (N = 73) used primarily print but also braille (Table 4). We missed information on diagnoses or reading media for 19 subjects. More boys (N = 20) than girls (N = 13) with diagnoses of Ocular Dystrophies were classified as combined braille and print users, but the groups were small. The results did not show any statistical association between gender and the use of braille only, braille and print (priority braille) or braille and print (priority print) (Fisher’s exact, p = 0.21). Nor did we find any statistical association between gender and the four different diagnostic groups (Fisher’s exact, p = 0.44). From 1967 to 2007, 287 children with a visual impairment got braille education. Figure 1 shows the number of children diagnosed in each 5-year period, for the three most frequent diagnoses plotted against the middle of each 5-year interval on the horizontal axis. Most of the children were diagnosed with ROP and that diagnosis peaked in 1977. After 1977, the number of subjects with ROP declined, and in 2002, few children had ROP as the underlying cause of their visual impairment. The number of children diagnosed with LCA increased from 1987 to 1992. Braille users among the children diagnosed with JNCL increase significantly after 1992. Time trends over 40 years by underlying causes among Norwegian children that received braille education. The main reasons of visual loss in subjects receiving braille education from 1967 to 2007 were ROP, juvenile neuronal ceroid lipofuscinoses, LCA, RP, optic nerve hypoplasia, sequelae to brain disorders, congenital glaucoma, congenital cataract and retinoblastoma. Our results seemed to be in accordance with earlier international publications. Kocur & Resnikoff (2002) claimed that the main anatomical causes of visual loss in children were retinal disorders, optic atrophy and lesions of the higher visual pathways. This was in line with Gilbert & Foster (2001) who showed that in high-income countries, lesions of the optic nerve, higher visual pathways, congenital abnormalities and hereditary retinal dystrophies were predominated as the cause for childhood blindness. Mets (1999) concluded that poor vision among children was most often caused by congenital insults, whether genetic or simply prenatal. In contrast, the results from Titiyal et al. (2003) carried out in India showed that almost half of the children suffered from potentially preventable and/or treatable conditions, with vitamin A deficiency/ measles and cataract as the leading causes. Our results showed no differences in gender distribution in the occurrence of eye or brain disorders leading to braille as the reading media over the 40-year time period. This is the opposite of the results from Dandona & Dandona (2003) and Dandona et al. (2001). They concluded that the majority of Indian children with blindness were female, but they had small numbers in their studies. Lack of population-based samples may also be one reason for different results. Among the children in Norway that had received braille education in Norway from 1967 to 2007, the results showed that the most frequent diagnosis was ROP. However, from the time trend analyses, we can see that the diagnosis peaked in 1977 and then declined. Haines et al. (2005) claimed that to be born before gestational week 29 combined with a birth weight of 1250 g or lower, increase the risk of ROP. They found that 13% of the 233 preterm babies had a severe vision deficit as a result of ROP. In 1992, Drews et al. (1992) concluded that ROP was the most common known cause of legal blindness among 10-year-old children in Metropolitan Atlanta. ROP because of oxygen therapy at the neonatal units has changed in Norway over the past decades and may have influenced the decreasing number of children registered with serious eye problems because of this disease. The number of braille users among children diagnosed with the degenerative JNCL disease increased particularly after 1992. However, there was no significant increase in the occurrence of diagnosed children with NCL in Norway this period (Augestad & Flanders 2006). NCL is a progressive degenerative disease and has today no curative treatment. From our clinical experience, we know that there has been a change in braille recommendation over time. There have been discussions among professional educators, if the children with the different NCL diagnosis profit from learning braille. In Norway today, most of the experts in the field agree that the children with JNCL should start reading visually, followed by learning braille as their vision deteriorates. Not all children with NCL will be able to master braille reading process; nevertheless, they might be able to write braille and communicate with their peers by auditory reading (using synthetic speech). Among the 287 children, 28 were diagnosed with LCA. For those with residual vision, the visual acuity is 3/60 or less, according to Moore (1990). Leroy & Dharmaraj (2003) on the other hand reports that the vision loss in individual with LCA may vary greatly from relatively mild acuity problems (20/80) to no light perception, depending on the genes associated with LCA. Retinitis Pigmentosa is a term used to refer to another clinically and genetically heterogeneous group of retinal degenerations that are closely related to LCA (Stone 2007). Lotery et al. (2001) claimed that ‘the distinction between LCA and RP is largely based on age of onset of visual dysfunction. Patients whose conditions are diagnosed when they are younger than 1 year are likely to be classified as having LCA, while those older than 1 year developing photoreceptor degeneration are more likely to be diagnosed as having RP’. In our study, individuals with LCA constitute around 10% of the total group, in accordance with Leroy & Dharmaraj (2003) who reported that children with LCA account for 10–20% of cases of congenital blindness. Nonregistry-based methods of estimating frequency have limitations. Babalola et al. (2003) claimed that estimates mainly based on the number of children educated in schools for the blind have several shortcomings. These include the possibilities that some children may not be taught braille if their blindness was because of certain medical conditions such as severe brain injury or certain degenerative processes and that parents may not send the children to schools where braille is taught. Estimates based on surveys could also miss high-prevalence subgroups. Strength of the study may be that we believe that the total number of 287 children that had received braille education from 1967 to 2007 were included. It is about 4.8 million inhabitants in Norway, among them 1.1 million children younger than 18 year old. The national public health services and special public child health centre may be rated as good compared to many other countries. The probability to identify all children in need of braille education because of severe vision loss is high. In addition, today there is a public school system that integrates all children independent of physical or mental abilities. The epidemiology of childhood blindness is in accordance with socioeconomic standard and primary health care and eye care services in a country (Gilbert et al. 1996; Foster & Gilbert 1997). Gilbert et al. (1993) claimed that 75% of the world’s blind children live in developing countries. The awareness of the severe disability and possible strategies for prevention may have been in focus by the Norwegian government. The causes and the development in medical treatment in the last decade may also have influenced the number of children given braille education. Fewer kids may also have learned to use braille because of improved available technical equipment. The impacts of these changes have yet to be documented. For children with residual vision, decisions regarding reading media are nowadays made in collaboration with parents and reading specialists for severe visual impaired, often supplemented by psychological or ophthalmological expertise. If it is possible to obtain an eye prognosis from ophthalmologists, as always will be the case in NCL children, it is easier to make a final decision. If the residual vision can be used, as is the case in most subjects aged 6–9 years with JNCL, and in most cases with early RP-debut, in order to crack the visual reading code, it is normal to start with print reading, later supported by braille. The challenge, as shown by Vik (2008), is to give the necessary support and stimulation for multimedia reading at home and at school. For a 40-year period, we identified the number of children receiving braille education in Norway and the underlying causes for their visual impairments. The number of subjects receiving braille education had a peak in 1977, mostly caused by the high frequency of ROP. Children suffering from NCL are today routinely offered braille education more often than before 1992, partly caused by a shift in perspective, from social care to education for all." @default.
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• W2000961897 title "Braille use among Norwegian children from 1967 to 2007: trends in the underlying causes" @default.
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