A SITUATION ANALYSIS OF CHILDHOOD BLINDNESS IN THE SUDAN

London School of Hygiene & Tropical Medicine DEPARTMENT OF INFECTIOUS & TROPICAL DISEASES PROJECT REPORT Candidate No: 470123 COMMUNITY ETE HEALTH A SITUATION ANALYSIS OF CHILDHOOD BLINDNESS IN THE SUDAN Supervisor: Dr. Mohammed Muhit International centre of eye health - LSHTM Project Length: Short For Academic Year 2006-2007

To My Parents My Wife & Kids & My Teachers Ahmed 1

ABSTRACT Background: There are about 1.4 millions blind children worldwide. Control of childhood blindness is a priority for VISION-2020. There is no available data about the causes of childhood blindness in the Sudan. Data about causes help planning for control of childhood blindness. Aim: To determine the causes of blindness/svi among 43 students attending the only two blind school in Sudan and to map eye services available for children.. Method: Data was collected from 43 blind or severely, visually impaired children attending the only two blind schools in Sudan, using a standard WHO form (ERCB). Data was collected from three tertiary hospitals in the capital Khartoum and one ophthalmic unit in Gadarif. Theatre registration records were reviewed to determine the frequency and the different types of surgery done in the year 2006. Results: The mean age for all the study participants was 11.4 years (CI: 10.6-12.2). 30(70%) of the subjects were males. The overall prevalence of blindness was 35(81.3%), severe visual impairment was 3(7%), visual impairment was 3(7%) and normal was 2(4.7%). Retina/optic nerve lesions were the commonest 12(31.6%) followed by whole globe lesions 9(23.7%). and pathologies where the globe appears normal 8(21.1%). The lens causes were seen in 7(18.4%) cases. The commonest aetiology was the hereditary factors 12(31.6%) but the specific mode of inheritance couldn t be determined in any of them. The aetiology was unknown in the majority of cases 23 (60.5%). This idiopathic proportion (60.5%) was broken as follows: uncorrected high refractive errors leading to amblyopia 17(44.7%), cataract 4(10.5%), and glaucoma 2(5.3%). Trauma was the only childhood factor, it was encountered in 3(12.5%) of cases. There were no cases attributed to measles. The commonest preventable causes was amblyopia 8(21.1%) followed by trauma 3(7.9%), the commonest treatable cause was cataract 7(18.4%) followed by glaucoma 4(10.5%). There is a defect at the primary level of services. Provision of surgery for children is poor in Gadarif. A lot and diverse types of surgeries are done in Khartoum to cover the need of the majority of state. Conclusion: more comprehensive, high quality eye care services need to be established to control childhood blindness. 2

CONTENTS SUBJECT PAGE - Acknowledgement 4 - Abbreviations 5 - List of tables 6 - List of figures 7 CHAPTER ONE Introduction & Literature Review 9 Objectives 18 CHAPTER TWO Materials & Methods 20 CHAPTER THREE Results 26 CHAPTER FOUR Discussion 48 Recommendations 56 References 60 Appendix (Questionnaire) 3

ACKNOWLEDGEMENT I am deeply indebted to my respectful supervisor Mohammed Muhit for making it possible to fulfill this onerous responsibility. I am really full of gratitude for supporting me all the time, understanding and filling the defects and directing the way. Being in contact to him was a great privilege and a great opportunity to learn things that you never learn from books. Many great thanks to the students, teaching and managing staff of Khartoum and Gadarif blind schools. Thanks for their endless patience and co-operation. Thanks for the love and feeling of belonging they gave me all the time. Thanks for the one from whom we have learnt a lot in the field of childhood blindness control, the one who always touches on the humane aspect of the issue, the one who gave us a lot of weapons and hope to change the future of the blind children in our countries, thanks for Clare Gilbert. 4

ABBREVIATIONS U5MR Under- Five Mortality rate SVI Severe Visual Impairment: WHO World Health Organization (ERCB) The WHO/PBL Eye Examination Record for Children with Blindness and Low Vision (ICEH) NGO International Centre for Eye Health in London Non Governmental Organizational LIST OF TABLES 5

Table 1;1 Table 1;2 Table 3;1 Table 3; 3 Table 3; 4 Table 3; 5: Table 3; 6 Table 3; 7 Table 3; 8 Table 3; 9 The absolute and relative frequency distribution of the younger age groups of the Sudanese population according to sex in the year 2005: The under- five and infant mortality rates U-5 MR in the Sudan over the last 50 years Absolute and relative frequencies of the categories of visual loss in 43 Sudanese children attending two blind schools Absolute and relative frequency of the different types of previous eye surgery out of 86 eyes of 43 Sudanese children attending two blind schools: Absolute and relative frequencies of the anatomical site of abnormality leading to severe visual impairment and blindness in 38 Sudanese children attending two blind schools Absolute and relative frequencies of the subcategories of the anatomical site of abnormality leading to severe visual impairment and blindness in 38 Sudanese children attending two blind schools Absolute and relative frequencies of the definite aetiological categories of severe visual impairment and blindness in 38 Sudanese children attending two blind schools Absolute and relative frequencies of the subcategories of the definite aetiological site of abnormality leading to severe visual impairment and blindness in 38 Sudanese children attending two blind schools The absolute and relative frequency distribution of the avoidable causes of blindness in 38 Sudanese children attending two blind schools. The absolute and relative frequency distribution of the different types of surgical operations done in the three major tertiary eye hospitals of the Khartoum state in year 2006 for children 6

LIST OF FIGURES Figure No Title Figure 3;1 The absolute and relative frequencies of the different age groups in the study participants. Figure 3;2 The absolute and relative frequencies of the sex distribution in the study participants. Figure 3; 3 The absolute and relative frequency of the different types of previous surgeries in the 86 eyes of all the study participants. Figure 3; 4. The relative frequency distribution of the different types of surgery done for Sudanese children in the three major eye hospital in Khartoum in 2006 7

CHAPTER I 8

INTRODUCTION AND LITERATURE REVIEW 1-1 Definitions: Childhood: a child is defined as an individual aged less than16 years.[1] Blindness and severe visual impairment: WHO defines blindness as a corrected visual acuity in the better eye of less than 3/60, and severe visual impairment as a corrected acuity in the better eye of less than 6/60. [1] Basic school in Sudan: Is the one which offers education from grade one to grade eight. School for the blind in Sudan: Is a special basic school which is dedicated to the blind and severely visually impaired children who have no other disabilities. Avoidable causes of blindness: Are those which are either entirely preventable, or where treatment can prevent blindness or restore sight.[2] 1-2 Epidemiology of childhood blindness: 1-2-1 Prevalence of childhood blindness: The prevalence of blindness in children is associated with under- 5 mortality rate (U5MR). The prevalence is approximately 0.4/1000 in high-income countries, 0.7/1000 in middle-income countries and 0.9/1000 in low-income countries. The overall prevalence of childhood blindness is 0.75/1000 children.[1] 1-2-2 Incidence of childhood blindness: It has been estimated that 500 000 children become blind every year- approximately one every minute- and about half of them dies within one or two years of becoming blind. [3] 1-2-3 Magnitude of childhood blindness: There are about 1.4 millions blind children worldwide.[1] Recent research on the economic cost of blindness indicates that blindness costs the community billions of 9

dollars in lost productivity, caring for the blind, rehabilitation and special education. Approximately one third of this cost is thought to be incurred by blindness in children. Approximately three-quarters of the world s blind children live in the poorest regions of Africa and Asia, where the prevalence is high, and the child population is large. Childhood blindness is the second largest cause of blind person- years, following cataract. Globally, approximately 70 million blind person-year are caused by childhood blindness.[4] 1-3 Causes of childhood blindness: 1-3-1 Methodology of data collection: 1-3-1-1The WHO/PBL Eye Examination Record for Children with Blindness and Low Vision (ERCB): This form uses standard definitions and a reporting form, which allow comparison of the collected data; and the causes are classified according to the main anatomical site of the abnormality, as well as the underlying etiology. The main advantage of having two classification systems is that data on the anatomical site can be collected for all children, while etiological data, although more difficult to obtain, are more useful for planning relevant intervention programmes. [5] 1-3-1-2 The purpose of using the ERCB: [5] 1- To assess the requirement of individual children for: medical/surgical management optical correction low vision therapy 10

2- To identify preventable and treatable causes of childhood visual loss so that appropriate control measures can be implemented. 3- To monitor changing patterns of childhood blindness over time in response to changes in health care, specific interventions and socio-economic development. 4- To assess educational needs of visually disabled children so that appropriate education services can be planned. 1-3-2 Avoidable causes of blindness in children: Are those which are either entirely preventable, or where treatment can prevent blindness or restore sight. [2] 1-3-2-1 Preventable causes of blindness in children: [2] 1. Corneal scarring due to: Measles. Vitamin A deficiency. Ophthalmia neonatorum. Harmful traditional medications. Infective corneal ulcers. 2. Intra-uterine infections: Rubella. Toxoplasmosis. Other teratogens such as alcohol. 3. Peri-natal factors: Retinopathy of prematurity. Birth hypoxia. 11

4. Hereditary disease: Risk counseling for dominant diseases. 1-3-2-2 Treatable causes of blindness in children: They include cataract, glaucoma, retinopathy of prematurity and corneal disease like corneal ulcer and corneal opacity. [2] 1-3-3 Causes of childhood blindness in developing versus developed countries: In high-income countries, lesions of the optic nerve and higher visual pathways predominate as the cause of blindness, while corneal scarring from measles, vitamin A deficiency, the use of harmful traditional eye remedies, and ophthalmia neonatorum are the major causes in low-income countries. Retinopathy of prematurity is an important cause in middle-income countries. Other significant causes in all countries are cataract, congenital abnormalities, and hereditary retinal dystrophies. [1] 1-4 Control of childhood blindness: The control of blindness in children is complex, requiring community activities through to sophisticated tertiary eye care services. Multidisciplinary collaboration will be required with comprehensive service delivery encompassing health promotion, specific preventive measures, optical, medical, and surgical services as well as low vision care, special education, and rehabilitation. The challenges are to ensure political commitment towards the alleviation of poverty and the development of models that are effective, replicable, sustainable, and equitable and to mobilise the additional resources required. [6] 1-5 childhood blindness in the context of VISION-2020: The control of blindness in children is considered a high priority within the World Health Organization s (WHO s) VISION 2020 The Right to Sight programme.[7] 12

1.6 Childhood blindness in Sub-Saharan Africa: The estimated prevalence of childhood blindness in Sub-Saharan Africa is 1.24/1000. The total estimated number of the blind children is 320 000 children, representing 22.9% of the total number of the blind children in the world. Considering the anatomical site of the abnormality, corneal lesions are responsible for 36% of the causes of childhood blindness. Considering the aetiology, childhood factors like measles, vitamin A deficiency, trauma etc are responsible for 34% of causes of childhood blindness.[4] 1.7 Sudan; the national context: 1.7.1 Area and geography: Sudan is the largest country in Africa area wise and 10th largest in the World. It covers an area of 2.505.000 km square (nearly one million miles square), making 8.3% of Africa area and 1.7% of world lands. Lying in the north east of Africa, Sudan falls between latitudes 03:30 and 23:08 north of the Equator, and longitudes 21.49 and 38.35 degrees East of Greenwich. As a federal republic Sudan is divided into 25 states, each has a capital. Khartoum is the capital of the country. [8] 1.7.2 Population: The estimated population in 2005 is 35 397 000[9] The urban population is :36.8% [8] Population below poverty line: 40%. [8] Literacy: 61% ( males:71.8% & females: 55.5%) [8] Life expectancy: 58.9 years.[9] GDP- real growth rate: 9.6% (2006 est.)[8] GDP-per capita (PPP): $2400 (2006 est.)[8] 13

Table 1.1 shows the absolute and relative frequency distribution of the younger age groups of the Sudanese population according to sex in the year 2005: Table 1.1 The absolute and relative frequency distribution of the younger age groups of the Sudanese population according to sex in the year 2005:[9] Age group (years) Males (thousands) Females (thousands) Total (thousands) Percentage out of total population Cumulative percentages 0 4 2808 2685 5493 16 16 5 9 2473 2374 4847 14 30 10-14 2207 2145 4352 12 42 15-19 2036 1952 3988 11 53 1.7.3 Childhood health indicators in the Sudan: Immunization coverage (measles): 60%. [10] Malnutrition prevalence, weight for age (% of children under 5): 40.7% (3) Birth attended by trained personnel (% of total) (2000): 87%. (3) Table 1.2 shows the under- five and infant mortality rates U-5 MR in the Sudan over the last 50 years [10] Table 1.2: Under five and infant mortality rates in the Sudan over the last 50 years Health indicator 1960 1970 1980 1990 1995 2000 2004 Under five mortality rate (per 1000) Infant mortality rate (per 1000) 208 172 142 120 106 97 91 123 104 86 74 69 65 63 1.7.4 Magnitude of childhood blindness in the Sudan: The current estimate of the prevalence sustained by Vision 2020 committee in the Sudan is 1.2/1000 (around 18000 blind children).[11] However, according to the U-5 MR which 14

has been around 100 in the last 10 years,[10] the prevalence should be not more than 0.8/1000[4] (around 12 000 blind children). 1.8 Study areas- background information: 1.8.1 Khartoum state: 1.8.1.1 Khartoum state- general demography: Khartoum state consists of three big cities; Khartoum, Omdurman and Bahri. It covers an area of 22 142 km 2. The three cities are situated where the Blue Nile meets the White Nile to form the river Nile. It is a relatively well developed African state. The total population is 5 761 000 (2005). 87% of them are living in the urban part of the state. All the different ethnic groups are represented in Khartoum state. It is the commercial and the executive heart of the country. It is surrounded by many internally displaced camps.[9] 1.8.1.2 Children eye care services: There are three tertiary eye hospitals that provide relatively good eye services. Two of them are governmental (Khartoum and Walidain hospital) while the third one (Makka) is a non governmental organizational hospital. 1.8.1.3 Khartoum blind school (Alnoor institute for the blind): It has been established in the seventies by the LIONS club. It is under supervision of the ministry of education, but it s facing a lot of financial troubles. It is non-residential, but it provides accommodation for those coming from peripheral areas. There is shortage of teaching materials and lack of training. 15

1.8.2 Gadarif state: 1.8.2.1 Gadarif state- general demography: It lies in the eastern part of Sudan -between longitude 33 36 east, latitude 14-16 northsharing border with Ethiopia and Eritrea. Its surface area is 71 000 km 2. The total population is 1 728 000 (2005) comprising 16.4% of the total population of Sudan. 42% of them are children and 52.6% are females. Only 30% of the population is living in the urban area. The main economic activity is agriculture; Gadarif is very famous for its highly productive, fertile land. Gadarif city is the capital of Gadarif state. 1.8.2.2 Gadarif hospital eye department children eye care services: There is an eye unit as a part of the general hospital. There are two ophthalmologists and there is an operating theatre and two wards. 1.8.2.3 Gadarif blind school: It has been established four years ago in Gadarif city by the ministry of education. It has very poor infra-structures and the teachers got no training. They depend on local philanthropists for the running cost. It is a non-residential school and all the students are from the city itself. 16

1.9 Rationale of the study: There is no available literature about childhood blindness in Sudan apart of one study done in the internally displaced camps around Khartoum. The study is an attempt to add more scientific information about the issue to help better understanding and more evidence-base planning. The study provided information on the causes of childhood blindness and eye care services available for children in the urban setting of the capital Khartoum compared to the semi-urban/rural setting of Gadarif. This information could be used to identify the gap in services and inform health authorities to address them. The study identified many children in the blind school who had the potential to benefit from simple optical and surgical measures to restore their sights and join normal education. A good rapport was built between the author and both the students and teachers of the blind school which makes future partnership and co-operation more feasible. The study reflects the importance of data recording and keeping in the hospitals to help planning. 17

1.10 Aim and objectives: 1.10.1 Aim: To build a long-term, evidence-based programme for control of childhood blindness in Sudan. 1.10.2 General objectives: To provide useful data on causes of childhood blindness and available services for children eye care- in a comparison between a rural/semi-urban and an urban setting- to identify the gap in health services. To use the data of the study to inform the planers and policy makers to control childhood blindness in Sudan 1.10.3 Specific objectives: Specific objectives: To determine and compare the causes of childhood blindness among the students of Khartoum blind school and Gadarif blind school. To estimate and compare the magnitude of eye health services provided to children in the year 2006 by using the hospital records of the major eye hospitals in Khartoum state and the ophthalmic unit in Gadarif. 18

CHAPTER 2 19

MATERIALS AND METHODS 2.1 General consideration: The study was carried out in Khartoum as an urban setting and Gadarif (400 km southeast of Khartoum) as a rural or semi-urban setting. The study is a summer dissertation for partial fulfillment of a master degree in community eye health. It extended for six weeks from 22/07/2007 to 01/08/2007. The study consisted of two components: A descriptive, cross sectional survey in the only two blind schools in the country to collect information about the causes of SVI/ blindness and compare between them. A retrospective review of hospital data of the three major tertiary eye hospitals in Khartoum and the only one ophthalmic unit in Gadarif to assess the heath services available for children and compare between the two settings. 2.2 Recruitment of the study participants: There are only two blind schools in the Sudan, one in Khartoum- the capital) and the other one in Gadarif (400 km) south-east of Khartoum. All the students of both schools,who match with the inclusion criteria, were supposed to be recruited in the study. All the 18 students of Gadarif school were included in the study, but only 25(33%) of Khartoum school. That is because the school was supposed to start the new academic year- after the summer break- in the 20 th of June 2006. However there were many financial difficulties and mechanical problems involving the cars that transport the students. The school did not start until the 11 th of August 2007. As an alternative solution, contact by telephone was made with those whom telephone numbers had been recorded in the school. Arrangements were made to bring them to the school to collect the data, and to return 20

them home by the end of the day. Those who were not reached and included in the study were not living in Khartoum, or have no telephone contact addresses or were facing difficulties in movement due to heavy rains and floods that affected the whole country during that period. 2.3 Data collection: 2.3.1 Data collection team: It consisted of: A qualified ophthalmologist (clinical MD) to fill the questionnaire by consistent history taking and eye examination. A qualified optometrist (4-year Bachelor degree) to do visual acuity testing and refraction. 2.3.2 Method of data collection: 2.3.2.1 Blind school: Data was collected about each child by the ophthalmologist and recorded using the (ERCB). 2.3.2.2 Hospital data: Data about eye care services available for children was collected using a questionnaire that had been specifically designed and used for that reason before. The ophthalmologist filled the questionnaire by interviewing the medical directors and/or the ophthalmologists and the heads of the statistics departments in the hospitals. Theatre registration books were used to perform manual computing of the different types of paediatric surgeries done in 2006. 21

2.4 method of eye examination: Examinations were conducted in the schools for the blind. Each child was seen with one of the parents and/or his/her class teacher, 2.4.1 Visual acuity: Snellen E chart was used to measure visual acuity at a distance of six metres in an area that is well lit by day-light.. If the child normally wears spectacles for distance these were worn. The vision was tested for each eye separately, and then for both eyes together. Pin hole testing for improvement of vision was done. Refraction was done for all the study participants except in cases where the red reflex was not clear. The visual acuity examination methodology was kept uniform throughout the study to avoid measurement bias.. Low vision aids assessment was not done. Cycloplegia was not needed. 2.4.2 Functional vision and visual field: The assessment of functional vision was performed with both eyes together, and with spectacles if these are normally worn. Can see to walk around: was assessed by asking the student to walk between two chairs placed one-metre apart in a well-lit area. Can recognize faces: Was assessed by asking the student to recognize one of the teachers or one of his/her class- mates. Visual field was not assessed. 22

2.4.3 Anterior and posterior segment examination: Anterior segment examination was examined using a torch and a magnifying loupe. Intra- ocular pressure was not measured. Posterior segment examination was be performed after dilating the pupil, where indicated, using a direct ophthalmoscope. 2.4.4 Classification of causes: The classification system of (ERCB) was used to determine the main anatomical site and the aetiological category for each eye separately and then for the person by using the detailed definitions and criteria recommended in the (ERCB) coding instructions.[5] The causes were then classified into avoidable and non avoidable. 2.5 Inclusion criteria: Age should be less than 16 years (WHO definition of childhood).[5] Children who are blind or severely visually impaired; the presenting visual acuity (i.e. with glasses if they are normally worn) in the better eye should be less than 6/60.[5] Consent to participate in the study. 2.6 Ethical approval: Ethical approval was obtained from London School of Hygiene and Tropical Medicine ethical committee. Written consent to visit the school and examine the children was obtained from the principals of the schools in co-ordination with the local ministry of education correspondent. A simple and clear information sheet was explained for the children and a verbal consent obtained. Arrangements were done with a national NGO 23

hospital to provide glasses and surgery free of charge for those, recommended after the examination.. 2.7 Data management: Data was entered and checked using Epi-data, then data was exported to STATA-9 and analyzed using tests of significance (p values) at 95% level. 2.8 Limitations: The limited number of blind schools in Sudan. The timing of the study which was during the unexpectedly extended summer break of Khartoum blind school. Shortage of time that doesn t allow for follow-up of the optical and surgical recommendations to make sure that they were executed. Lack of data on evaluation of health care services for children. 2.9 Materials used in the study: Snellen E chart. Trial set. Trial frame. Retinoscope. Loupe. Torch. Direct ophthalmoscope. Mydriatic eye drop. Glasses. 24

CHAPTER 3 25

RESULTS 43 blind children were included in the study; 18(41.9%) of them representing all the students of Gadarif school and 25(58.1%) representing only (33.3%) of the 75 students of Khartoum school. 3.1 Age structure: The mean age in Khartoum school was 12.3 years (CI: 11.4-13.2) while the minimal age was 8 years and the maximal one was 15 years. The mean age in Gadarif school was significantly younger; 10.2 years (CI: 9-11.3) (p=0.002). The mean age for all the study participants was 11.4 (CI: 10.6-12.2). Figure 3; 1 shows the absolute and relative frequencies of the different age groups in the study participants. 3.2 sex distribution: In both schools the ratio of males to females was very high; in Khartoum school 18 (72%) of the study participants were males compared to 12 (66.7%) male students in Gadarif school. There was no significant difference between the two schools regarding this ratio (p=0.7). Figure 3; 2 shows the absolute and relative frequencies of the sex distribution in the study participants. 26

3.3 Ethnicity: The majority of students 20(80%) in Khartoum school were belonging to ethnicities originating from the north and the middle part of the country followed 5 (20%) by those from the western part. In Gadarif school the same picture predominates since ethnicities from north and the middle comprised 9(53%) followed by 4 (23.5%) from the west. Only one (5.9%) student belonging to the eastern-sudan ethnicities was studying in the school. The two schools were comparable regarding their ethnic structure and the difference between them was statistically insignificant (p=0.3). 3.4 Consanguinity: The parents of 13(54.2%) students in Khartoum school were first degree relatives compared to 9 (53%) in Gadarif school (p= 0.5). 10 (23%) of the study participants have at least one brother or sister affected by blindness. 3.5 Visual loss categories: In Khartoum blind school 1(4%) had no visual impairment compared to 1(5.6%) in Gadarif school. Visual impairment was higher 3(16.7%) in Gadarif school compared to 0(0%) in Khartoum school. Severe visual impairment was higher in Gadarif 2(11%) compared to Khartoum school 1(4%). Blindness was found in 23(92%) in Khartoum compared to 12(66.7) in Gadarif. The overall prevalence of blindness was 35(81.3%), severe visual impairment was 3(7%), visual impairment was 3(7%) and normal was 2(4.7%). The two schools were comparable and the difference between them was statistically insignificant (p=0.115). 27

Table 3; 1 shows the absolute and relative frequencies of the categories of visual loss in the study participants according to school. Table 3; 1 Absolute and relative frequencies of the categories of visual loss in 43 Sudanese children attending two blind schools WHO category Level of vision No(%) Gadarif school No(%) Khartoum school No(%) Total No impairment > 6/18 1(5.6) 1(4) 2(4.7) Visual impairment <6/18 6/60 3(16.7) 0(0) 3(7) Severe visual <6/60 3/60 2(11) 1(4) 3(7) impairment Blind <3/60 NPL 12(66.7) 23(92) 35(81.3) Can not test 0(0) 0(0) 0(0) Total 18(100) 25(100) 43(100) 3.6 Navigational vision: Of those children who were blind or severely visually impaired, 9 (35.5%) of Khartoum school students compared to 10 (71%) of Gadarif school students, had navigational vision, being able to walk unaided between two chairs placed one metre apart in a well lit room. The difference between the two schools was statistically significant (p=0.01) 3.7 Visual field: It was too difficult to test the visual fields in almost all of the study participants. 3.8 Other physical and mental disabilities: There was no other physical or mental disability detected in any of the study participants. 28

3.9 Previous eye surgery: 18(32%) out of 56 eyes had a history of previous eye surgery in Khartoum school compared to 12(40%) out of 30 eyes in Gadarif school. Cataract was the most frequent type of surgery in both Khartoum 5(27.8) and Gadarif 9(75%) regarding eyes. The two schools were comparable regarding the different types of surgeries done and the difference between them was statistically insignificant (p=0.2 for the right eye, p=0.4 for the left eye) Table 3; 2 shows the absolute and relative frequency of the different types of previous eye surgery in each school. Table 3; 3 Absolute and relative frequency of the different types of previous eye surgery out of 86 eyes of 43 Sudanese children attending two blind schools: Type of surgery No (%) Gadarif school No (%) Khartoum school No (%) Total Glaucoma 0(0) 5(27.8) 5(16.7) Cataract 9(75%) 5(27.8) 14(46.7) Corneal graft 1(8.3%) 1(5.6) 2(6.7) Retinal detachment 0(0) 2(11) 2(6.7) Repair after trauma 2(16.7) 5(27.8) 7(23.4) Total 12(100) 18(100) 30(100) Figure 3; 3 shows the absolute and relative frequency of the different types of previous surgeries in the 86 eyes of all the study participants. 29

3.10 The anatomical site of abnormality: Considering the 38 pupils who were blind or severely visually impaired, the two schools were comparable and the difference between them was statistically insignificant (p=0.1). Retina/optic nerve lesions were the commonest 12(31.6%) followed by whole globe lesions 9(23.7%). and pathologies where the globe appears normal 8(21.1%). The lens causes were seen in 7(18.4%) cases. Amblyopia due to uncorrected high refractive errors (whole globe) was the commonest anatomical subcategory 8(21.15) followed by retinitis pigmentosa (retina) 7(18.4%), aphakia(lens) 6(15.7%), and glaucoma (whole globe) 4(10.5%). Corneal opacification and phthisis bulbi were uncommon; each accounting for only 2(5.2%) cases. The absolute and relative frequencies of the anatomical site of abnormality leading to severe visual impairment and blindness is shown in table 3; 4. Table 3; 4 Absolute and relative frequencies of the anatomical site of abnormality leading to severe visual impairment and blindness in 38 Sudanese children attending two blind schools Site of abnormality No (%) No (%) No (%) Khartoum school Gadarif school Whole globe 8(33.3) 1(7.1) 9(23.7) Cornea 1(4.2) 1(7.1) 2(5.2) Lens 3(12.4) 4(28.6) 7(18.4) Retina 4(16.7) 4(28.6) 8(21.1) Optic nerve 4(16.7) 0(0) 4(10.5) Globe appears normal 4(16.7) 4(28.6) 8(21.1) Total 24(100) 14(100) 38(100) 30

The two schools were comparable regarding the frequencies of the subcategories of the anatomical site of abnormality leading to severe visual impairment and blindness (p=0.4) The absolute and relative frequencies of the subcategories of the anatomical site of abnormality leading to severe visual impairment and blindness is shown in table 3; 5. 31

Table 3; 5: Absolute and relative frequencies of the subcategories of the anatomical site of abnormality leading to severe visual impairment and blindness in 38 Sudanese children attending two blind schools Anatomical cause No (%) Khartoum school No (%) Gadarif school No (%) Total Whole globe Phtisis 2(8.3) 0(0) 2(5.2) Anophthalmos 1(4.2) 0(0) 1(2.8) Microphthalmos 0(0) 0(0) 0(0) Buphthalmos/ Glaucoma 3(12.5) 1(7.1) 4(10.5) Removed 0(0) 0(0) 0(0) Disorganized 2(8.3) 0(0) 2(5.2) Subtotal 8(33.3) 1(7.1) 9(23.7) Cornea Scar 0(0) 0(0) 0(0) Opacity 1(4.2) 1(7.1) 2(5.2) Dystrophy 0(0) 0(0) 0(0) Subtotal 1(4.2) 1(7.1) 2(5.2) Lens Cataract 0(0) 1(7.1) 1(2.7) Aphakia 3(12.5) 3(21.4) 6(15.7) Subtotal 3(12.5) 4(28.6) 7(18.4) Retina Retinitis pigmentosa 3(12.5) 4(28.6) 7(18.4) Retinal detachment 1(4.2) 0(0) 1(2.7) Subtotal 4(16.7) 4(28.6) 8(21.1) Optic nerve Atrophy 4(16.7) 0(0) 4(10.5) Subtotal 4(16.7) 0(0) 4(10.5) Globe appears normal Amblyopia 4(16.7) 4(28.6) 8(21.1) Refractive errors 0(0) 0(0) 0(0) Subtotal 4(16.7) 4(28.6) 8(21.1) Grand total 24(100) 14(100) 38(100) 32

3.11 Visual improvement following refraction: In Khartoum school, the visual loss categories remain the same after refraction. Figure 3; 4 shows the changes in visual loss categories after refraction. The difference between the two schools was statistically significant (p=0.002). 3.12 Aetiology of visual loss: The two schools were comparable regarding the main aetiology of blindness/svi and the difference between them was statistically insignificant (p=0.5). The commonest aetiology was the hereditary factors 12(31.6%) but the specific mode of inheritance couldn t be determined in any of them. The aetiology was unknown in the majority of cases 23 (60.5%). This idiopathic proportion (60.5%) was broken as follows: uncorrected high refractive errors leading to amblyopia 17(44.7%), cataract 4(10.5%), and glaucoma 2(5.3%). Trauma was the only childhood factor, it was encountered in 3(12.5%) of cases. There were no cases attributed to measles. Rubella was suspected in 3(12.5%) cases and measles was suspected in 1(2.6%) case. The absolute and relative frequencies of the definite aetiological categories of severe visual impairment and blindness in the study population are shown in table 3; 6. 33

Table 3; 6 Absolute and relative frequencies of the definite aetiological categories of severe visual impairment and blindness in 38 Sudanese children attending two blind schools Aetiological category No (%) No (%) No (%) Khartoum school Ghadarif school Hereditary disease 6(25) 6(42.9) 12(31.6) Intrauterine factor 0(0) 0(0) 0(0) Perinatal factor 0(0) 0(0) 0(0) Childhood factor 3(12.5) 0(0) 3(7.9) Unknown 15(62.5) 8(57.1) 23(60.5) Total 24(100) 14(100) 38(100) The two schools were comparable regarding the aetiological subcategories of visual loss. The difference between them was statistically insignificant (p=0.7). The absolute and relative frequencies of the subcategories of the definite aetiology leading to severe visual impairment and blindness in 38 the study population is shown in Table 3; 7. 34

Table 3; 7 Absolute and relative frequencies of the subcategories of the definite aetiological site of abnormality leading to severe visual impairment and blindness in 38 Sudanese children attending two blind schools Aetiological l cause No (%) Khartoum school No (%) Ghadarif school No (%) Total Hereditary Chromosomal 0 (0) 0 (0) 0(0) Mitochondrial 0 (0) 0 (0) 0(0) Autosomal dominant 0 (0) 0 (0) 0(0) Autosomal recessive 0 (0) 0 (0) 0(0) X- linked 0 (0) 0 (0) 0(0) Cannot specify 6 (25) 6 (0) 12(31.6) Subtotal 6 (25) 6(42.9) 12(31.6) Intrauterine factor Rubella 0(0) 0(0) 0(0) Toxoplasmosis 0(0) 0(0) 0(0) Others 0(0) 0(0) 0(0) Subtotal 0(0) 0(0) 0(0) Perinatal/ neonatal factor R.O.P 0(0) 0(0) 0(0) Cerebral hypoxia 0(0) 0(0) 0(0) Ophthalmia neonatorum 0(0) 0(0) 0(0) Others 0(0) 0(0) 0(0) Subtotal 0(0) 0(0) 0(0) Postnatal/infancy/chilhoood Vitamin Deficiency 0(0) 0(0) 0(0) Measles 0(0) 0(0) 0(0) Trauma 3(12.5) 0(0) 3(7.9) Others 0(0) 0(0) 0(0) Subtotal 3(12.5) 0(0) 3(7.9) Can t determine(idiopathic) Cataract 2(8.3) 2(14.3) 4(10.5) Glaucoma/Buphthalmos 1(4.2) 1(7.1) 2(5.3) Abnormality since birth 12(50) 5(35.7) 17(44.7) Subtotal 15(62.5) 8(57.1) 23(60.5) Grand total 24(100) 14(100) 38(100) 35

3; 13 Avoidable causes of blindness: Distribution of the different avoidable causes of blindness in the tow schools and the total study population is shown in table 3; 8. Table 3; 8 The absolute and relative frequency distribution of the avoidable causes of blindness in 38 Sudanese children attending two blind schools. Avoidable cause No (%) Khartoum school No (%) Ghadarif school No (%) Total Preventable Trauma 3(12.5) 0(0) 3(7.9) Amblyopia 4(16.7) 4(28.6) 8(21.1) Subtotal 7(29.2) 4(28.6) 11(29) Treatable Cataract 3(12.5) 4(28.6) 7(18.4) Glaucoma 3(12.5) 1(7.1) 4(10.5) Subtotal 6(25) 5(35.7) 11(29) Total 13(54.2) 9(64.3) 22(57.9) Non avoidable causes 11(45.8) 5(35.7) 16(42.1) Grand total 24(100) 14(100) 38(100) 3.14Actions needed: There was a statistically significant difference in both optical (p=0.006) and surgical actions needed. 3.14.1 Khartoum school: 6 (24%) students were referred for low vision aids assessment. Only one (4.2%) student was transferred to join general stream education. No glass was prescribed and no one was referred for surgery. 36

3.14.2 Gadarif school: Glasses were prescribed and arranged for 6 students (33.3%). Surgery was arranged for 2 (11%) students; one with cataract and the other with posterior capsule opacification. 5 (27.8%) were recommended to join general stream. 3.15 Services available for children: 3.15.1 Outpatient attendants and their clinical presentations: It was not possible to obtain reliable data from hospital records regarding the number of the outpatient attendants and their different presentations. 3.15.2 Frequency and types of surgery performed: 3.15.2.1 Surgical operations in Khartoum: The absolute and relative frequency distribution of the different types of surgical operations done for children in the three major tertiary eye hospitals of the Khartoum state in year 2006 is shown in table 3; 9. 37

Table 3; 9 The absolute and relative frequency distribution of the different types of surgical operations done in the three major tertiary eye hospitals of the Khartoum state in year 2006 for children Type of surgery Makka eye Walidain eye Khartoum Total Hospital hospital eye hospital No (%) No (%) No (%) No (%) Cataract 550(65.1) 282(33.4) 13(1.5) 845(100) Squint 191(77.3) 16(6.5) 40(16.2) 247(100) Glaucoma 91(77.1) 25(21.2) 2(1.7) 118(100) Trauma (repair) 38(45.2) 4(4.8) 42(50) 84(100) Enucleation 27(93.1) 0(0) 2(6.9) 29(100) Dachryocystorhinostomy 18(69.2) 4(15.4) 4(15.4) 26(100) Corneal graft 6(66.7) 0(0) 3(33.3) 9(100) Ptosis 23(100) 0(0) 0(0) 23(100) Retinal detachment 0(0) 2(100) 0(0) 2(100) Total 944(68.3) 333(24.1) 106(7.7) 1383(100) Cataract was found to be the most common surgery done for children in Khartoum state 845(60%) followed by squint 247(18%), glaucoma 118 (9%) and trauma 84(6%). Corneal grafting was done only for 9(1%). The relative frequency distribution of the different types of surgery done for Sudanese children in the three major eye hospital in Khartoum in 2006 is shown in figure 3; 5. 38

3.15.2.2 Surgical operations in Gadarif: There was no facility for paediatrics surgical eye services in 2006 in Gadarif eye department due to difficulties with paediatrics anaesthesia. The children who needed surgery were to be referred. 3.16 Other services for children: In Gadarif eye unit there were no dedicated services for children. In Khartoum each of the three hospitals has a dedicated squint clinic that provides medical and surgical services. There is no trained paediatrics ophthalmologist. There is only one paediatrics/oriented ophthalmologist who has done a 3-month training course in Pakistan. He is working in Walidain hospital and he started a paediatric ophthalmology clinic there. However only some surgeons in his hospital refer childhood cataract cases to his clinic. In Makka hospital, there is one senior skillful surgeon who is dedicated to do the childhood cataract surgeries and all cases are referred to him. He got no paediatrics ophthalmology training but he has a good surgical experience. Both of these two surgeons are now doing posterior capsulectomy and anterior vitrectomy as a primary procedure in the management of childhood cataract. There are no nurses or optometrists or anaesthetists who are trained in paediatrics ophthalmology. However, many general anaeshetists have a very good experience in paediatrics anaesthesia. Khartoum eye hospital is the only hospital that has a dedicated paedierics ward and the only one that receives traumatic eye emergencies throughout the 24 hours. There is low vision services arranged with Hong Kong centre, and it is run by a senior optometrist who got a training course in low vision aids in Pakistan. All of the three hospitals participate in cataract eye camps which are run as outreach activities for adults. All of the hospitals participate in 39

the training of ophthalmologists. There is a school for training of ophthalmic nurses in Khartoum eye hospital and another big one was constructed by Makka hospital but did not start training yet. There are no community-based rehabilitation programme related to ophthalmology, but there is a school screening programme which is run by two hospitals. Two of the three hospitals are equipped with the majority of instruments required for paediatrics ophthalmology. Two out of the three hospitals have well access for a phakic glasses and intra-ocular lenses suitable for young children. 40

Fig 3;1 Absolute and relative frequency distribution of the age categories of 43 Sudanese students attending two blind schools 15, 35% 12, 28% 7-9 Yrs 10-12 Yrs 13-15 Yrs 16, 37% 41

Fig 3, 2Absolute and relative frequency sex distribution in 43 Sudanese children attending the two blind school in the country 13, 30% male female 30, 70% 42

Fig 3.3 Absolute and relative frequency of the different types of previous surgeries in 86 eyes of 43 sudanese children attending the blind schools 7, 23% 5, 17% glaucoma cataract corneal graft retinal detachment repair following trauma 2, 7% 2, 7% 14, 46% 43

Fig 3.4 Frequency changes in visual loss categories following refraction of 18 Sudanese children attending Gadarif blind school 14 12 10 8 6 4 2 0 Normal VI SVI Blind Before refraction After refraction 44

Absolute and relative frequency distribution of the differnet types of eye surgeries done for Sudanese children in Khartoum in 2006 23, 2% 29, 2% 9, 1% 2, 0% 84, 6% 26, 2% 118, 9% 247, 18% 845, 60% Cataract Squint Glaucoma Trauma (repair) Enucleation Dachryocystorhinostomy Corneal graft Ptosis Retinal detachment 45

46

CHAPTER 4 47

DISCUSSION 4.1 Strengths and weaknesses of the study: Using the blind schools to identify the causes of childhood blindness has the advantage of collecting data from a larger number of blind children by a single examiner using a standard method of data collection within a relatively shorter period of time and with minimal expenses. [12] Requirement for medical/surgical management, optical correction and low vision therapy can also be assessed.[13] A rapport is built between the schools and the different ophthalmic bodies carrying out the study. Children with multiple disabilities, pre-school age children, those who have died, girls, those from lower socio-economic groups, and those from rural communities are likely to be under-represented in schools for the blind compared with population-based studies.[12] All the study participants came from an urban setting, males were predominant and no additional disability was demonstrated. Non avoidable causes of blindness are likely to be over-represented in blind school. [14] The number of the study participants (18 in Gadarif and 25 in Khartoum) is very small; therefore the power and precision of the study is considerably weakened.[15] Reduced precision produces wider confidence intervals that tend to overlap; therefore the comparison between the two school tended to be statistically insignificant in the majority of situations. [16]Furthermore only 25(33 %) of the 75 Khartoum blind school students has been included in the study because there was an unusual delay in starting the new year because of financial problems. All attempts to solve the problem by the author were 48

in vain. The number recruited was by obtaining the addresses of the students and arranging for their examination with their families. People who have addresses in the school and who responded are likely to have a care seeking behaviour that is different from those who do not. They are expected to have better care of their children regarding compliance with preventive as well as curative measures in the past and the future. Therefore over-representation of non avoidable causes would be expected. The rains and floods in Khartoum during the study period decreased the response further. These facts further increase the selection bias in the study. There is also some element of information bias since the children and their parents might not be very much aware about many important facts in the past medical/surgical history. Although operating theatre records tend to be more reliable, data collected from hospital might introduce information bias. This data is sometimes inaccurate, incomplete and of poor quality.[17] 4.2 Age structure: The mean age in Khartoum school was 12.3 years (CI: 11.4-13.2), while the mean age in Gadarif school was significantly younger; 10.2 years (CI: 9-11.3). There was statistically significant (p=0.002) age difference between the two schools. The children who responded in Khartoum tended to be from higher classes of the school. Gadarif school has been established only four years ago and therefore its students were younger. This age difference might affect comparison since younger age groups would reflect the near past. 49

4.3 sex distribution: In both schools the ratio of males to females was very high; in Khartoum school 18 (72%) of the study participants were males compared to 12 (66.7%) male students in Gadarif school. There was no significant difference between the two schools regarding this ratio (p=0.7). This may reflect the higher value accorded to males in both the urban and rural Sudanese societies as well as the possibility that male children are more prone to blinding disorders. This has also been demonstrated in similar studies carried out in Ethiopia[18] and Bangladesh.[14] 4.4 Ethnicity: The majority of students 20(80%) in Khartoum school were belonging to ethnicities originating from the north and the middle part of the country followed 5 (20%) by those from the western part. In Gadarif school the same picture predominates since ethnicities from north and the middle comprised 9(53%) followed by 4 (23.5%) from the west. Although Gadarif is situated in the eastern part of Sudan, only one (5.9%) student belonging to those eastern- Sudan ethnicities was studying in the school. These findings reflect that the majority of ethnicities- like those from the south and east are underserved in the Sudan even in the capital Khartoum; there are only two blind schools with a capacity of not more than 100 students for the whole country. Further more many rural Sudanese families prefer to send their blind children to religious schools to become Imams in the future. Cost and lack of awareness might be an important barrier. However further research is needed to understand the reasons. 50

4.5 Consanguinity: The parents of 13(54.2%) students in Khartoum school were first degree relatives compared to 9 (53%) in Gadarif school (p= 0.5). The data might reflect the strength of the traditions that disfavor marrying to non relatives, and that they are still operating even in the urban community of Khartoum. Consanguinity is so much related to hereditary causes of blindness in Arabic [1, 4, 19] and Indian communities.[20] 10 (23%) of the study participants have at least one brother or sister affected by blindness. This greatly, increases the socioeconomic burden on these families, especially if some of these children have additional disabilities.[1] 4.6 Visual loss categories: In Khartoum blind school 1(4%) had no visual impairment compared to 1(5.6%) in Gadarif school. Visual impairment was higher 3(16.7%) in Gadarif school compared to 0(0%) in Khartoum school. Many studies of the blind school identified children with a presenting vision which is normal or visually impaired, who are supposed to join normal education[21, 22]. This might be explained in many ways; poor people can get free shelter and food in blind schools, those with unilateral unsightly blind eyes may escape the psychological trauma they may face in normal schools.the presence of such students was more pronounced in Gadarif 4(22.3%) than in Khartoum school 1(4%), what reflects the little educational experience and lack of training of the teaching staff in Gadarif. Unfortunately some teachers are just interested in increasing the number of the students to secure their teaching jobs. They are not aware about and not active enough to find and recruit real blind children from the community. 51

The proportion of children with SVI/blindness 38(88.3%) was less than that reported for Ethiopia (92.2%)[18] and south eastern Nigeria (95.8%)[23] but more than that reported for Malawi (83.9%), Uganda (76.5%) and Kenya (66.3%) [24]. The two schools were comparable, and the difference between them was statistically insignificant (p=0.115). 4.7 Navigational vision: Of those children who were blind or severely visually impaired, 9 (35.5%) of Khartoum school students compared to 10 (71%) of Gadarif school students, had navigational vision. Therefore there is a considerable place for the use of the optical and non-optical low vision services in both school. Low vision services are not available in Gadarif. Although they are now available in Makka hospital in Khartoum, neither of the teachers nor of the students of Khartoum school was aware about them. Therefore provision of the service is not only by making at available, but also by bridging the gap to reach those who need it. 4.8 Other physical and mental disabilities: There was no other physical or mental disability detected in any of the study participants. Absence of additional disability was a condition regarding acceptance in both schools. Those with blindness and additional disabilities are more under-served in Sudan. However their recruitment is so demanding and seems to be unrealistic at the present, taking into account the miserable situation of the scarce blind schools in Sudan. 52