1. Detection & Referral of 4,221 Children with Cataract from Rural Bangladesh: Use of Key Informants by Child Sight Foundation in Bangladesh Detection & Referral of 4,221 Children with Cataract from Rural Bangladesh: Use of Key Informants by Child Sight Foundation in Bangladesh Mohammad A Muhit, Issa Mainuddin, Shehab Choudhury, Anwar Hossain, Johurul Islam Jewel, Clare Gilbert International Centre for Eye Health (ICEH), London School of Hygiene and Tropical Medicine, UK & Child Sight Foundation (CSF), Bangladesh

2. Introduction and aim: Globally, over 200,000 children are unnecessarily blind from cataract(1). Majority of cataract blind children live in developing countries, without being detected and referred for surgery. Early detection, referral and surgery is essential for good visual outcome. Over 1/3rd of all blindness in children in Bangladesh is due to cataract (2). The challenge is to find them early, and to develop a referral system. The aim of this paper is to describe a large scale program, which is based on a model of ‘community based action for detection and referral of cataract blind children’ from remote villages in Bangladesh. This community based programme and Key Informant Method (3,4) was developed and piloted by ICEH and used in Bangladesh and Malawi (5,6). Since 2003, CSF has been using the Key Informant Method in various districts of Bangladesh to detect and refer cataract blind children for sight restoring surgery. Data from 2005-7 are presented here. Introduction and aim: Globally, over 200,000 children are unnecessarily blind from cataract(1). Majority of cataract blind children live in developing countries, without being detected and referred for surgery. Early detection, referral and surgery is essential for good visual outcome. Over 1/3rd of all blindness in children in Bangladesh is due to cataract (2). The challenge is to find them early, and to develop a referral system. The aim of this paper is to describe a large scale program, which is based on a model of ‘community based action for detection and referral of cataract blind children’ from remote villages in Bangladesh. This community based programme and Key Informant Method (3,4) was developed and piloted by ICEH and used in Bangladesh and Malawi (5,6). Since 2003, CSF has been using the Key Informant Method in various districts of Bangladesh to detect and refer cataract blind children for sight restoring surgery. Data from 2005-7 are presented here.

3. Methods: Key Informant Method (KIM) utilizes trained volunteers for case detection of children with cataract. KIM is implemented by one project staff (CM- community mobilizer) in one sub-district (all age population 250,000 and child population 100,000) in 6 weeks. The CM trains 50-100 volunteer KI from each sub-district through half-day workshops (each workshop attended by 20 KI). After training, KI spend about 4 weeks to network and disseminate the information for case detection & list all blind children, including children who are blind from cataract. All identified children are examined in the sub-district by an ophthalmologist. Children, who have cataract, are referred to partner eye hospitals for cataract surgery. Methods: Key Informant Method (KIM) utilizes trained volunteers for case detection of children with cataract. KIM is implemented by one project staff (CM- community mobilizer) in one sub-district (all age population 250,000 and child population 100,000) in 6 weeks. The CM trains 50-100 volunteer KI from each sub-district through half-day workshops (each workshop attended by 20 KI). After training, KI spend about 4 weeks to network and disseminate the information for case detection & list all blind children, including children who are blind from cataract. All identified children are examined in the sub-district by an ophthalmologist. Children, who have cataract, are referred to partner eye hospitals for cataract surgery.

4. Blind Children in their home Empowering communities & key informants Health education Training on ‘how to identify a blind child’ Awareness campaign Schools Assessment, counselling & referral by mobile team Incurable Treatable Rehabilitation Eye hospital Community based eye care services for children Community Mobilizer for Child Sight Working with key informants, volunteers and other organisations to develop linkages and to overcome barriers.

5. Key Informant Training Flipchart

6. If the eye is damaged by trauma including red eye, swollen eye etc. If the child is born with ‘serious’ eye problem including white pupil, squint, nystagmus (continuous involuntary movement of the eye) etc. If the child develop serious eye problems (white pupil, nystagmus etc) anytime after birth If the child has difficulty in seeing things

11. Community leader NGO field-worker Government Officer School Teacher Local council Member Imam Health worker Who are the Key Informants volunteers Who are the Key Informants volunteers

12. How do the key informants work?

13. Activities at sub-district (Thana) level Entry and sensitization Volunteer Key Informant Training Identifying blind children

14. Activities at sub-district (Thana) level Entry and sensitization Volunteer Key Informant Training Identifying blind children

15. Eye examination of children at sub-district (thana) level Finding blind children from community

16. Eye examination of children at sub-district (thana) level

17. Providing eye examination services for children in the community Eye examination of children at sub-district (thana) level

18. Health education and counselling

19. Cataract blind children referred for surgery

21. Results: From 2005 to 2007, 8 field staff (community mobilizer) of CSF trained 12,097 volunteer key informants. Key informants identified a total of 14,232 blind children (VA worse than 6/60 in better eye), all were examined by ophthalmologists. Of them, 4,221 children had unoperated cataract in both eyes. Each community mobilizer was able to identify 593 blind children and about 175 cataract blind children every year. Each staff (CM) referred children for 350 cataract surgeries per year. This model program demonstrates that every paediatric ophthalmology unit may employ one full-time staff (CM) and ensure that at least 300 paediatric cataract surgeries are offered to children from remote & rural areas, every year. Results: From 2005 to 2007, 8 field staff (community mobilizer) of CSF trained 12,097 volunteer key informants. Key informants identified a total of 14,232 blind children (VA worse than 6/60 in better eye), all were examined by ophthalmologists. Of them, 4,221 children had unoperated cataract in both eyes. Each community mobilizer was able to identify 593 blind children and about 175 cataract blind children every year. Each staff (CM) referred children for 350 cataract surgeries per year. This model program demonstrates that every paediatric ophthalmology unit may employ one full-time staff (CM) and ensure that at least 300 paediatric cataract surgeries are offered to children from remote & rural areas, every year.

22. Discussion : Globally, cataract is the leading treatable cause of blindness in children. Recent data from various Asian & African countries indicate that there are thousands of children staying blind without knowing about the treatment and without accessing surgical services. Key Informant Method can be effectively used in rural communities in Asia and Africa to reach the most difficult to reach children and can ensure that children with cataract are detected early and referred promptly for cataract surgery. Moreover, community volunteer’s (key informant) training provides an opportunity to empower people with information and knowledge about eye diseases, so that they can help themselves by identifying and referring children with cataract. General increase of awareness and community participation can play a major role in sustaining the impact of key informants in reducing cataract blindness in children. Discussion : Globally, cataract is the leading treatable cause of blindness in children. Recent data from various Asian & African countries indicate that there are thousands of children staying blind without knowing about the treatment and without accessing surgical services. Key Informant Method can be effectively used in rural communities in Asia and Africa to reach the most difficult to reach children and can ensure that children with cataract are detected early and referred promptly for cataract surgery. Moreover, community volunteer’s (key informant) training provides an opportunity to empower people with information and knowledge about eye diseases, so that they can help themselves by identifying and referring children with cataract. General increase of awareness and community participation can play a major role in sustaining the impact of key informants in reducing cataract blindness in children.

23. Conclusions & implications: Bangladesh has an estimated 40,000 blind children, of which 12,000 cataract blind. Over 1/3 rd of these children have already been identified by this ongoing programme. It is expected that by using Key Informant Method, by 2010, all blind children will be identified and cataract blindness will be eliminated. Other countries with large population and high prevalence of childhood cataract may benefit from similar approaches. CSF is committed to ensure that all blind children, including children blind from cataract in Bangladesh, are identified and referred for services. CSF wishes to collaborate with eye hospitals like CEITC to bring high quality paediatric eye care to children living in rural Bangladesh Conclusions & implications: Bangladesh has an estimated 40,000 blind children, of which 12,000 cataract blind. Over 1/3 rd of these children have already been identified by this ongoing programme. It is expected that by using Key Informant Method, by 2010, all blind children will be identified and cataract blindness will be eliminated. Other countries with large population and high prevalence of childhood cataract may benefit from similar approaches. CSF is committed to ensure that all blind children, including children blind from cataract in Bangladesh, are identified and referred for services. CSF wishes to collaborate with eye hospitals like CEITC to bring high quality paediatric eye care to children living in rural Bangladesh

24. References: 1.Muhit, M.; Gilbert, C. A review of the epidemiology and control of childhood blindness Tropical Doctor, 2003; 33(4):197-201 2.Muhit, M. A., Shah, S. P., Gilbert, C. E., Foster, A. Causes of severe visual impairment & blindness in Bangladesh: A study of 1,935 children. Br J Ophthalmol. 2007. 91(8):1000-4. 3.Muhit M. 2007 Finding blind children: The Key Informant Method. J Comm Eye Health 2007 Jun;20(62):30-1. 4.Muhit, M. A., Shah, S. P., Gilbert, C. E., Hartley, S. D., Foster, A. 2007 The key informant method - a novel means of ascertaining blind children in Bangladesh. Br J Ophthalmol. 2007, 91(8):995-9 5.Kalua, K, Patel D, Muhit M, Courtright P. Effectiveness of Key Informant Method in Malawi. Eye. 2008, 1-3. 6.Kalua, K, Patel D, Muhit M, Courtright P. Causes of blindness among children identified through village key informants in Malawi. Cand J ophth. 2008, 43, 425-7. References: 1.Muhit, M.; Gilbert, C. A review of the epidemiology and control of childhood blindness Tropical Doctor, 2003; 33(4):197-201 2.Muhit, M. A., Shah, S. P., Gilbert, C. E., Foster, A. Causes of severe visual impairment & blindness in Bangladesh: A study of 1,935 children. Br J Ophthalmol. 2007. 91(8):1000-4. 3.Muhit M. 2007 Finding blind children: The Key Informant Method. J Comm Eye Health 2007 Jun;20(62):30-1. 4.Muhit, M. A., Shah, S. P., Gilbert, C. E., Hartley, S. D., Foster, A. 2007 The key informant method - a novel means of ascertaining blind children in Bangladesh. Br J Ophthalmol. 2007, 91(8):995-9 5.Kalua, K, Patel D, Muhit M, Courtright P. Effectiveness of Key Informant Method in Malawi. Eye. 2008, 1-3. 6.Kalua, K, Patel D, Muhit M, Courtright P. Causes of blindness among children identified through village key informants in Malawi. Cand J ophth. 2008, 43, 425-7. This programme was designed by ICEH; implemented by CSF and funded by Christian Blind Mission, Bank Asia, Sightsavers International and Muslim Aid UK Presented by Dr M A Muhit, at the 8 th General Assembly of the International Agency for Prevention of Blindness, Argentina 2008.