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Review Article

Visual Disabilities in Children Including Childhood Blindness

Rajiv Khandekar, MS (Ophth), PG Dip (Epi)

We should address visual disabilities in children instead of only the childhood blindness. Diseases related to nutritional,
communicable diseases should be addressed through strategies for achieving Millennium Development Goals.
Facilities in African countries and countries with populations like India and China must be strengthened to address
curable/preventable visual disabilities in children. Even though all efforts are done to strengthen, we will have 0.93
million blind children by 2020. Role of family physicians and paediatricians in trans-disciplinary approach to address
visual disabilities in children is very crucial. If rational distribution of skilled human resource is not planned visual
disabilities will not reduce effectively. Rehabilitation of visually disabled children should be integral part of addressing
childhood blindness. All stakeholders including parents of children with visual disabilities should work together to
achieve the goals.
Key Words: visual disabilities, childhood blindness, VISION 2020, congenital cataract, retinopathy of prematurity,
low vision care

C hildhood blindness refers to a group of diseases and


conditions occurring in childhood or early
adolescence (<16 years of age), which, if left untreated,
Magnitude of Blindness in Children and Projections:
The prevalence of childhood blindness was 0.3 per
1,000 children in industrialised countries and 1.2 per 1,000
result in blindness or severe visual impairment that are children in the developing countries in the year 2000.
likely to be untreatable later in life.1 Due to enormous loss Accordingly, it was estimated that there were nearly 1.4
of Disability Adjusted Life Years (DALYs), childhood million blind children in the world. Each year, an additional
blindness is estimated to be the second leading cause of 50,000 children become blind and are added to this pool.4
the burden due to blindness.2 The global cost of blindness We made an attempt to project the magnitude of blind
with the onset in childhood in terms of lost capacity of children up to the year 2030 and for this evidence based
earning has been estimated to be between US$ 6,000 information and few assumptions were used (Figure 1). It
and $27,000 million.3 Visual disabilities in children are is a well known fact that 40% of childhood blindness is
more complex compared to those in adults. Without visual due to preventable/curable causes.5 While projecting the
stimulus, the childs overall development suffers. In magnitude by time in a chronic condition, childhood
addition to the disabled child, his/her family and the society mortality rate should be accounted for. A study in UK
at large are also negatively affected. Therefore, the World suggested that 10% of children with severe visual
Health Organization and its partners in their consorted impairment and blindness die within the first year of
efforts to eliminate avoidable blindness VISION 2020 The detection of their blindness because many them have
Right to the Sight included childhood blindness also. other potentially life threatening conditions.6 In another
While reviewing the global situation of childhood study in Sweden, 13% of blind children died due to other
blindness, it is essential to project the magnitude and debate systemic conditions.7 Accordingly, world is likely to have
the rationale of grouping different types of visual disabilities. 1.6 million blind children if no additional interventions are

The author(s) have no conflicts of interest or proprietary interest in any of the topics or products presented in this manuscript.
Acknowledgement: The author would like to thank Dr Parikshit Gogate, Dr Rikin Shah and Dr. Kishor H for their advice for improving the manuscript, and Dr. Abdulaziz
Al-Rajhi for his inspiration to prepare this manuscript as the theme of the World Sight Day in 2007 was Childhood Blindness.
From the Department for Control of Non Communicable diseases, Director General of Health Affairs, Ministry of Health, Oman.
Corresponding Author: Khandekar Rajiv, MS, PG Dip; Eye & Ear Health Care, Department for Control of Non-communicable diseases, Director General of Health
Affairs, Ministry of Health (HQ), PO Box 393, Muscat113, Oman. Fax: 00968-2461832; Email: rajshpp@omantel.net.om

Middle East Journal of Ophthalmology Vol 15, No 3-4, July December 2008
130

Figure 1. Projections of bilateral blind (vision <3/60) among <16 years old children.

carried out. If all curable or avoidable causes are corresponding restriction in field of vision. This is different
addressed, there would still be 0.93 million children with from WHO recommended definition of blind. In view of high
blindness. We have assumed that in next 25 years, no precision visual needs for daily activities, working on
new intervention modalities shall be available to treat computer, entertainment through television, it is high time
todays unavoidable causes (80% of childhood blindness) the definition of blindness especially in children is revised.
and we hope that that is not true. Considerable progress If we make it stringent the magnitude of blindness in children
has been made in the field of genetics to locate disease will definitely increase. A population-based survey in South
related genes for congenital cataract, retinal diseases and India had defined blindness as vision <6/60 as presented.
conditions linked to cortical blindness.8,9 Scientists may On its basis the authors projected that India could have as
soon find solutions to treat these conditions. many as 68,000 blind children.12 Global projections on basis
of this definition should be carried out by 2010.
What Definition of Blindness Should Be Used? If a person with unilateral blindness has progressive
Rahi et al studied the epidemiology of visual eye disease or fellow eye is affected due to ocular trauma,
impairment and blindness in childhood in 2005 and they he/she would become visually disabled in both eyes.
highlighted the importance of uncorrected refractive Therefore unilateral blindness is included in calculation
error. 10 Unfortunately, current WHO definition of of disability percentage for compensation. Magnitude and
blindness does not include uncorrected refractive error. epidemiology of unilateral blind children therefore would
It is a major problem in children especially in Asian be of interest to the health planners. To our knowledge,
countries. Many children in these countries have limited data on the prevalence of unilateral blindness in children
access to refractive services. In Arab countries access to is scanty. A community based study of 6,610 children of
visual aids is granted, but frequently not wanted for cultural <16 years of age in Oman suggested that the prevalence
reasons. Without visual aids, these children remain of unilateral blindness was 9 per 10,000 children. In the
functionally blind and are unable to perform activities for same age group the rate of bilateral blindness was 7 per
daily living. Hence a revision of definition was proposed 10,000.13 If visual disability due to unilateral blindness is
to include vision as presented rather than best-corrected added in estimating the burden of visual impairment, it is
vision while defining blindness. If we use the definition of likely that global estimates visual impairment in children
blindness as vision <3/60 presenting instead of best will double.
corrected, uncorrected refractive error would contribute Many diseases causing visual disabilities in children
15% of the global blindness in children. WHO has show epidemiological transition. Nutrition and infection
recommended a revision of the estimates of blindness to related causes mainly lead to corneal blindness. The
include uncorrected refractive error.11 citizens in countries facing wars and civil conflicts suffer
In industrialised countries and countries with rapidly from poverty and poor hygiene and Iraq has recently
developing economies like India, blindness is defined as reported more blind children. 14 Diabetes is a major
vision <6/60 with best possible correction and challenge in countries with evolving economies and

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131

children with juvenile diabetes would suffer from visual compliance and follow up and setting up effective
impairment and would need periodic eye care.15 Improved mechanisms to follow these operated children is crucial.
health services will result in better survival of children with ROP is the fifth leading cause of childhood blindness
visual impairment and multi-system diseases. Thus in globally. But fortunately, at risk infants who are screened
coming years their numbers might increase. However and treated for ROP have better functional as well as
infants with severe birth defects become less as structural results. The prevalence of aggressive ROP is
therapeutic abortions are more acceptable and hence the linked to resuscitating premature babies of less than 1.5
number of children with cerebral visual impairment is likely kilo gram.23 The national programs should raise awareness
to decrease.16,17 In short, risk factors of childhood blindness among neonatologists and paediatricians for eye
in the next twenty years are likely to change, requiring screening of newborns at risk and create facilities to
periodic review of the world data on childhood blindness manage ROP cases. In view of the known substantial
for proper planning. neuro-developmental retardation for life, ethical issues to
interrupt the natural course of these pregnancies and
Causes of Childhood Blindness: outcomes should be weighed and proactive interventions
Childhood blindness could be grouped according to should be reconsidered.
the anatomical structure affected or by the principal cause In many industrialised countries, diseases of the retina
of visual disability.18 Both are important while evaluating and optic nerve are now the leading causes of childhood
the impact of public health initiatives. Blindness (involving blindness. As limited remedial measures are available to
the cornea) due to complications of measles, Vitamin A manage them, affected children will need rehabilitation.
deficiency, ophthalmia neonatorum and harmful traditional Further research on both to manage and rehabilitate these
eye medicines was common in the past in countries with children even in developing countries should be
poor economies. Uncorrected refractive error is also a encouraged.
major contributor to the visual disability that could be Cortical visual impairment has become the major cause
managed at primary health care level. of visual impairment. The causes include perinatal
Congenital cataract and Retinopathy of Prematurity hypoxia, hydrocephalus, meningitis, birth trauma,
(ROP) affect visual functions in very early ages and they drowning episodes and periventricular leucomalacia.
can be prevented or treated. Modalities to prevent, Intervention and educational strategies to rehabilitate
diagnose and manage these conditions are available.19,20 visual function of such children have limited success but
Visual prognosis after cataract surgery in young children attempts will help the child, parents, teachers and
has improved considerably. But, congenital and infantile physician.24
cataracts are still responsible for 10% of global childhood
blindness and the leading cause of blindness in many Public Health Approach:
countries of Africa. For children with bilateral dense International organizations encourage and assist
cataract, urgent surgery is recommended to avoid dense member countries to plan program approach to address
amblyopia. In eyes with congenital and developmental childhood blindness. Their recommendations could be
cataract that are associated with microphthalmos, described as follows:
microcornea, coloboma, as part of syndrome or if there is Objectives: The global aim is to reduce the prevalence
unilateral cataract, the visual outcomes are not very of childhood blindness from 0.75:1000 to 0.4:1000 by the
promising following their management.21,22 Risk of delayed year 2020.
complications like glaucoma, even after successful Primary Prevention: International organizations and
cataract surgeries in children often compromises the visual national health programs should address all preventable
outcomes. Hence these children should be followed for a causes of childhood blindness through primary prevention.
long time. Proper counselling of parents to ensure better They include universal immunization against measles and

Status of Childhood Blindness in Next 5 to 10 Years:


Cataract secondary to rubella, measles and malnourishment will reduce and thus children with visual disability
due to them will decline.
Visual disabilities due to uncorrected refractive error in children would be addressed well in developing countries.
More ophthalmologists will be trained in paediatric ophthalmology but many of them will continue serving in
urban areas of developing countries.
Childhood blindness might get less attention compared to the other priority eye diseases included in the disease
control strategy of VISION 2020. (Senile cataract, Trachoma & Onchocerciasis)
Rehabilitation of visually challenged children will need more attention as it is given to its prevention and
management.
Evidence based health information would help in better planning of public health approach and rehabilitative
services for different visual disabilities.

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132

rubella and preventing and treating Vitamin A deficiencies. pediatric ophthalmologists was 1:4.5 million in South Africa
Most countries achieved high coverage of immunization in 2005, in India 0.63 per million in 2008.30,31 Resources to
and vitamin A supplementation initiatives.18 They could manage infantile and congenital cataract in developing
be implemented through child health care programs as it countries are sparse and should be generated.21 Each
will also help in reaching the 4th Millennium Developmental center requires pediatric refractionists, orthoptists, low
Goal.25 The risk of transmitting infection to the eyes of the vision care technicians, paediatric counsellors and
foetus during intrauterine life and at the time of birth could vocational trainers for providing practical training to visually
be minimized by proper antenatal care and supervised/ disabled children. Community based management by
hospital deliveries. Early detection of birth defects by vision guardians can help to link tertiary services to the
prenatal screening, proper counselling could also reduce community. The training of health personnel of primary
childhood blindness associated with systemic conditions. health care centres in basic eye examination, first aid and
Educational materials and counselling of parents are education of parents is needed. Such training programs
crucial. In Arab countries the population wearing a visible could be provided by staff of tertiary level eye care centres.
prosthesis is not very well accepted. Health promotion In African continent, cataract surgeons are trained for
should address this issue. Establishing primary eye care performing adult cataract surgeries but risk of complications
and referral systems could prevent serious complications in children with cataract and glaucoma are high and hence,
of common eye diseases in children. they should manage cataract and glaucoma in children after
Screening of Children with High Risk of Childhood getting special training in this field.
Visual Disabilities: Paediatric nurses, medical officers
and paediatricians trained in eye screening could detect Technologies for Management of Childhood Disease
small or large eyeballs, nystagmus, strabismus, white Diagnosing eye ailments in young children is very
pupils and birth defects like coloboma and aniridia. challenging. Often prompt treatment is required but
Proactive screening campaigns in institutions like blind counselling parents of children with guarded prognosis is
schools, special education schools and preschool difficult. Proper diagnostic tools especially with digital and
screening in kindergarten have been tried and are found laser technologies have helped. But it is often difficult to
cost effective.26 Such children should be reviewed at the keep pace with the rapid developments. Newer modalities
earliest. Expectant mothers in communities with high are costly, not easy to procure and difficult to maintain.
consanguinity or with a family history of congenital Scientifically conducted efficiency studies could guide
anomalies of eyes should be closely monitored during clinicians and decision makers to procure such expensive
pregnancy. Non-interventional screening procedures and but useful equipment. Operating on an infant requires
genetic tests could identify gross eye anomalies. expert anaesthetists and a well-equipped operation
Strengthening Secondary/Tertiary Eye Care Units: theatre. These children will need care and monitoring for
Examining eyes of very young children is challenging and the rest of their childhood and therefore computerized
not always possible for general ophthalmologists. In case records would be an asset. Telemedicine could bring
developing countries, skilled paediatric ophthalmologists a child in need nearer to the expert situated at the other
and well-equipped subspecialty units are not easily end of the world. Diagnostics and postoperative monitoring
accessible. General ophthalmologists with good diagnostic in remote areas could be supported after review of images
skills and effective equipment to note red reflex and by experts.
refraction would be helpful. Ophthalmologists should be Rehabilitation: Although ophthalmic personnel do not
trained in detecting childhood related visual disabilities offer rehabilitative services, they can motivate parents to
and they should promote long-term and frequent follow- avail them. Teachers and health personnel should
ups. Orienting them about the significance of visual encourage the child to use available residual vision. Such
function would enable them to guide parents for rehabilitation will need a trans-disciplinary approach
rehabilitation of their children. An expert group was involving a team comprising of an ophthalmologist, a
recently convened on the topic of childhood cataract, and paediatrician, parents, an optometrist, orthoptist,
guidelines are being developed. 27 They were also audiologist, a psychologist, psychiatrist, vision therapist,
described by Fan et al.28 Similar exercise for standardizing sociologist, and teachers. The goal is to integrate the child
screening and managing ROP is also described.29 These as soon as possible in a regular education system and
protocols will assist ophthalmologists in improving their not isolating him/her in institutions for children with special
skills. needs.
Although human resource development and Health Information and Research: Many publications
technology at low cost are part of strengthening secondary describe children in blind schools but few provide
and tertiary eye care, special attention should be given to community-based information on childhood blindness.
apply these strategies. Large sample required for such studies, involving highly
Human Resource Development: It is recommended to skilled manpower and high cost are main reasons for
have one paediatric eye centre with qualified paediatric limited information. The impact of linking different health
ophthalmologist for 5 million population. The density of programs to address childhood blindness is another fertile

Middle East Journal of Ophthalmology Vol 15, No 3-4, July December 2008
133

area for research. Genetic epidemiology and genetic VISION 2020 initiative. This will highlight importance
engineering are the areas for future developments. of addressing unilateral blindness, low vision,
amblyopia and uncorrected refractive errors. Visual
Childhood Blindness Groups: disabilities in children due to nutritional deficiencies,
In developed countries, parents of affected children
measles, rubella and uncorrected refractive errors
have created advocacy and self-help groups (e.g. Down
Syndrome society, Autism group, Cerebral Palsy group,
should be managed if countries attempt to reach the
etc). Parents also unite to share their views, give Millennium Development Goals (MDGs). Even if we
confidence and comfort to the needy, fight for the rights address all avoidable blindness we will be left with
of their children with special needs and even contribute in around 1 million blind children due to unavoidable
advocating policies for children with visual disability. cases of blindness. Better liaison of prevention of
Similar models may be adopted in other countries and blindness program with program for control of birth
can assist such groups partners in combating childhood defects, school health and child health care is
visual disabilities. recommended. Awareness among health care
Perspective of the Blind: providers and the parents will improve the
One of the stakeholders of VISION 2020 is Blind
rehabilitation of disabled children. In countries with
Union. Members can contribute in social marketing of
childhood blindness and formulating client friendly policies.
a high prevalence (Africa, India and China) training
Knowledge about rehabilitative opportunities is often not human resource and their placement in rural areas
available with therapeutic caregivers. Therefore would be crucial. Modern technologies including
counselling by visually challenged and demonstrating their telemedicine could assist eye care personnel in
own examples will help parents to understand the remote areas of countries with developing
situation, agree for timely interventions, cope with the economies. However, they should be cost effective
stress and face newer challenges. to be sustainable.

Points to Ponder
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Middle East Journal of Ophthalmology Vol 15, No 3-4, July December 2008
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