Summary A Global Situational Analysis of Glaucoma Services and Management A collaborative project of the International Eye Research Network

(IERN) RESEARCH OBJECTIVES: 1) To describe the resources available for diagnosing and managing glaucoma. 2) To describe the socio-demographic details and the type and stage of glaucoma among consecutive, 20 newly diagnosed glaucoma patients presenting to various eye facilities in low and middle income settings. 4) To assess the extent to which patients accept and adhere to the treatment recommended by the ophthalmologist, and assess rates of follow up. 5) To use the results of this situational analysis to identify areas of need for programme development and future research in low and middle income settings. METHODS: Recruitment: Attempts will be made to increase membership of the ICEH Ophthalmologist Research Network to 100. As the case mix is likely to vary by service provider, ophthalmologists representing different service providers will be asked to participate (e.g. government; mission; private; military; nongovernmental/charitable). We aim to have representation from as many countries as possible and will focus on ensuring that more ophthalmologists are recruited from countries with larger populations in order to provide information that is as representative as possible. Data Collection: Two questionnaires will be sent to each participating member:

1. Online questionnaire to assess clinical care and resources:equipment available for diagnosis and whether it is functioning (for example availability of perimetry, gonioscope etc), facilities and access to treatments for glaucoma (for example access to adjunctive agents during surgery, information leaflets/disease counselling for patients)

2. Clinical questionnaire Inclusion criteria: consecutive adults aged 20 years or above who are newly diagnosed, definite glaucoma patients, i.e. no glaucoma suspects or ocular hypertensive individuals. Exclusion criteria: aged less than 20 years. The following information will be collected on eligible patients newly diagnosed with glaucoma: socio-demographic details: age, sex, literacy case seeking behaviour in terms of who/where they had already consulted presenting visual acuity using WHO categories for each eye cup:disc ratio, if visible IOP, if measured findings of gonioscopy, if performed extent of visual field loss, if assessed treatment indicated treatment offered, if different from above treatment accepted whether patient attended their first follow up, within 2 weeks of the time recommended All data recording forms will be pilot tested prior to commencing the study and translation of questionnaires for non English members into local language will be performed. Ethical considerations: Ethical approval for the study has already been obtained from the Ethics Committee of the London School of Hygiene and Tropical Medicine. Each participating eye centre will confirm that local approval has been gained before data collection starts. Written informed consent will be required from those patients newly diagnosed and entered into the study. This study will not affect the clinical care provided to the patient.

Page | 1 of 4

A Global Situational Analysis of Glaucoma Services and Management A collaborative project of the International Eye Research Network (IERN) International Centre for Eye Health London School of Hygiene and Tropical Medicine Keppel Street London RESEARCH OBJECTIVES: 1) To describe the resources available for diagnosing and managing glaucoma. 2) To describe the socio-demographic details and the type and stage of glaucoma among consecutive, 20 newly diagnosed glaucoma patients presenting to various eye facilities in low and middle income settings. 4) To assess the extent to which patients accept and adhere to the treatment recommended by the ophthalmologist, and assess rates of follow up. 5) To use the results of this situational analysis to identify areas of need for programme development and future research in low and middle income settings. BACKGROUND: 60 million people globally are estimated to have glaucoma, up to 8 million of whom are blind (VA <3/60 in the better eye) [1]. More than 95% of people blind from glaucoma live in countries in the developing world [2] [3] the majority of whom will not have been diagnosed or received treatment [4] [5]. On the other hand, most people living in high income countries enjoy early detection through opportunistic screening, high quality treatment and rigorous follow up. Unfortunately glaucoma has attracted comparatively little publicity or funding in the developing world [2], which means that this inequity is likely to be perpetuated. A significant positive step, however, has been the recent inclusion of glaucoma as a priority area for VISION 2020, the global initiative for the elimination of avoidable blindness [6]. The reality for many glaucoma patients in low and middle income countries is that they travel a long way to an eye unit only to be told by the ophthalmologist that their vision loss is untreatable and that it is their good eye which needs treatment. Treatment is frequently refused by the patient [7]. This is in contrast to their neighbour who was also blind but who had an operation (for cataract) which completely restored their sight. Very few studies have systematically explored the variation in the care pathways for people with glaucoma in low and middle income countries and to improve the current situation there is an urgent need for information which identifies gaps that need to be filled. For example one method of disease control is that assessment for glaucoma should occur in all adults attending eye units [6] [8]. The extent to which this is routinely performed is unknown. There is very little information on clinicians knowledge / training in glaucoma, nor on how they diagnose and manage glaucoma in different settings, or whether they have functioning diagnostic equipment. For example, a PubMed search using the MESH terms perimetry and Africa yielded only 8 papers in English since 1969. Although it is frequently assumed that surgical management is the first line treatment for OAG in most low income settings [9-10], anecdotal evidence suggests that surgeons frequently do not offer surgery, their training stresses cataract surgery and puts little emphasis on glaucoma [11] and they fear the complications and possibility of visual loss. Indeed, an ophthalmologist in Nigeria has advocated using a separate ward for glaucoma patients so that after trabeculectomy they are not disappointed with the visual results which they would be if in a ward with cataract patients (Dr S Kirupananthan, personal communication). In this epidemiological study, we aim to determine and map the variation in the socio demographic, clinical presentation and management of incident POAG and PACG glaucoma globally. Often the clinicians preferred treatment and what treatment is finally accepted by the patient varies. Follow up is also major issue in management [12] and this study will report on follow up of the newly diagnosed. Secondary aims are to systematically examine the resources and constraints for diagnosing and managing glaucoma in different centres around the world and explore the services that are provided. The primary focus of this study will be in middle/low income countries where evidence for advocacy purposes is urgently required and where control of visual loss from glaucoma poses the greatest challenges.

Page | 2 of 4

METHODS: Recruitment: Attempts will be made to increase membership of the ICEH Ophthalmologist Research Network to 100. As the case mix is likely to vary by service provider, ophthalmologists representing different service providers will be asked to participate (e.g. government; mission; private; military; nongovernmental/charitable). We aim to have representation from as many countries as possible and will focus on ensuring that more ophthalmologists are recruited from countries with larger populations in order to provide information that is as representative as possible. Data Collection: Two questionnaires will be sent to each participating member:

3. Online questionnaire to assess clinical care and resources:equipment available for diagnosis and whether it is functioning (for example availability of perimetry, gonioscope etc), facilities and access to treatments for glaucoma (for example access to adjunctive agents during surgery, information leaflets/disease counselling for patients)

4. Clinical questionnaire Inclusion criteria: consecutive adults aged 20 years or above who are newly diagnosed, definite glaucoma patients, i.e. no glaucoma suspects or ocular hypertensive individuals. Exclusion criteria: aged less than 20 years. The following information will be collected on eligible patients newly diagnosed with glaucoma: socio-demographic details: age, sex, literacy case seeking behaviour in terms of who/where they had already consulted presenting visual acuity using WHO categories for each eye cup:disc ratio, if visible IOP, if measured findings of gonioscopy, if performed extent of visual field loss, if assessed treatment indicated treatment offered, if different from above treatment accepted whether patient attended their first follow up, within 2 weeks of the time recommended All data recording forms will be pilot tested prior to commencing the study and translation of questionnaires for non English members into local language will be performed. Sample Size: As this is a descriptive study no formal sample size calculation is required. In order not to overburden IERN ophthalmologists and so maintain high quality data, it was decided that they each collect data on 20 consecutive newly diagnosed patients. Feedback from ophthalmologists in the network suggests that this is a feasible number. It is not possible to estimate the number of hospitals that will take part but as the response to the earlier cataract study was excellent we do not believe this to be a significant issue. Data Analysis: Network ophthalmologists will be asked to return completed data either via paper copy or via a specifically designed spreadsheet [Microsoft Excel]. The information from each ophthalmologist will be double entered into a specially designed database [Microsoft Excel]. The database will allow analysis of data by country, WHO region or type of hospital. All the study investigators will be responsible for ensuring accuracy in data entry/data validation/ data analysis and publication (preferably in an open access journal) and dissemination of results to the relevant bodies. Ethical considerations: Ethical approval for the study has already been obtained from the Ethics Committee of the London School of Hygiene and Tropical Medicine. Each participating eye centre will confirm that local approval has been gained before data collection starts. Written informed consent will be required from those patients newly diagnosed and entered into the study. This study will not affect the clinical care provided to the patient.

Page | 3 of 4

REFERENCES 1. Foster, A., C. Gilbert, and G. Johnson, Changing patterns in global blindness: 1988-2008. Community Eye Health, 2008. 21(67): p. 37-9. 2. Rotchford, A., What is practical in glaucoma management? Eye (Lond), 2005. 19(10): p. 1125-32. 3. Quigley, H.A., Number of people with glaucoma worldwide. Br J Ophthalmol, 1996. 80(5): p. 389-93. 4. Ntim-Amponsah, C.T., et al., Evaluation of risk factors for advanced glaucoma in Ghanaian patients. Eye (Lond), 2005. 19(5): p. 528-34. 5. Mafwiri, M., et al., Primary open-angle glaucoma presentation at a tertiary unit in Africa: intraocular pressure levels and visual status. Ophthalmic Epidemiol, 2005. 12(5): p. 299-302. 6. VISION 2020 Global Initiative for the Elimination of Avoidable Blindness: Action Plan 20062011, http://www.vision2020.org/documents/publications/Vision2020_report.pdf. 7. Quigley, H.A., et al., Long term results of glaucoma surgery among participants in an east African population survey. Br J Ophthalmol, 2000. 84(8): p. 860-4. 8. Thomas, R. and R.S. Parikh, How to assess a patient for glaucoma. Community Eye Health, 2006. 19(59): p. 36-7. 9. Bowman, R.J. and S. Kirupananthan, How to manage a patient with glaucoma in Africa. Community Eye Health, 2006. 19(59): p. 38-9. 10. Cook, C., Chronic glaucoma case finding and treatment in rural Africa: some questions and answers. Community Eye Health, 2001. 14(39): p. 43-4. 11. Egbert, P.R., Glaucoma in West Africa: a neglected problem. Br J Ophthalmol, 2002. 86(2): p. 131-2. 12. Kabiru, J., et al., Audit of trabeculectomy at a tertiary referral hospital in East Africa. J Glaucoma, 2005. 14(6): p. 432-4. 13. Foster, P.J., et al., The definition and classification of glaucoma in prevalence surveys. Br J Ophthalmol, 2002. 86(2): p. 238-42.

Page | 4 of 4