Diabetic Retinopathy in the Katherine Region of the Northern Territory
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l4.n,aj DIABETIC RETINOPATHY IN THE KATHERINE REGION OF THE NORTHERN TERRITORY by Nandor Jaross Department of Public Health A thesis submitted as part of the requirements for the degree of Doctor of Philosophy at the University of Adelaide, South Australia January,2003 Declaration This thesis contains no materialwhich has been accepted for the award of any other degree or diploma in any university or tertiary institution and, to the best of my knowledge and belief, contains no material previously published or written by another person, except where due reference is made in the text. I give consent to this copy of my thesis, when deposited in the University Library, being available for loan and photocopying. 15th of January 2OO3 N Jaross N Jaross PhD Thesis Acknowledgements I began this research 15 years ago when I started to provide ophthalmic services to Aboriginal people in the Top End of Australia, This thesis is only one of the outcomes of the association with remarkable men and women who selflessly gave their time and energy to be my partners in the journey that led to better vision in Aboriginal communities in the Top End and Lower Top End of Australia. This thesis summarizes part of the information from my clinical work in the Top End which, hopefully, will lead to a better understanding and control of diabetic retinopathy in Aboriginal people. It is impossible to mention all of the organisations and individuals to whom I am grateful for their support during this proiect. I wish to acknowledge the support of the following organisations (in alphabetical order) and individuals (in chronological order): Australian Defence Forces Christian Blind Mission International Commonwealth Department of Health Department of Public Health, University of Adelaide Driver Primary School (Northern Territory) Department of Ophthalmology, Royal Adelaide Hospital Menzies School of Health Research Northern Territory Aboriginal Eye Health Committee "Sunrise" Rotary Club of Darwin Territory Health Services Wurli-Wurlinjang Health Center. I also acknowledge the support received from the rural nursing staff, including the team of nurses in Katherine District Hospital, the Aboriginal N Jaross ilr PhD Thesis people of the Northern Territory and the team of volunteers providing administrative assistance to the Mobile Eye Unit. It was a humbling experience the way my patients accepted me as part of their community. For this, I am most grateful. The meetings I attended with community elders and with community government councils opened my eyes to a different understanding of the world we live in' Beyond the unsung heroes providing health care in the Northern Territory I owe specialthanks to certain individuals whose support not only lifted my spirit when the going became tough, but their insight into Aboriginal health greatly helped the establishment and completion of the project. Sr Mike Mizen and Eddy Vigantes who were instrumental in setting up the rural eye services in Katherine region. Mr Bill and Mrs Loretta Grimster who, with their team of volunteers, provided invaluable administrative support for the mobile eye unit. Sr Moira McOreesh, Sr Sue Walker and Sr Kelly Humphryis from Katherine District Hospital without whom the Mobile Eye Unit could not have fulfilled its mission. Marion Scrymgeour and the Aboriginal Health Workers in the Wurli- Wurlinjang Health Center, who whole-heartedly supported the activities of the unit. ln the clinical activities in the Top End and Lower Top End (Katherine Region) | owe special thanks to Dr M.l Mahmood, the head of ophthalmic services in the Royal Darwin Hospital. He was always there to help when service requirements of the population were overburdening my shoulders. N Jaross IV PhD Thesis The change in attitudes of health professionals towards accept¡ng the need for laser therapy in Aboriginal communities was greatly due to my associate superuisor, Dr Henry Newland. ln the Top End he spoke about the need for laser treatment in Aboriginal communities at the Spring meeting of the Aboriginal Eye Health Committee in 1989. Without the changing attitudes towards diabetes and its ocular complications in the Northern Territory the KRDRS could have never been carried out. I cannot speak highly enough of the Dept of Public Health and my main supervisor, Assoc Prof Philip Ryan. After some turbulent years in my life this department provided a safe heaven for me to complete my studies. The atmosphere generated by the academic, research and administrative staff in the department promoted personal and professional growth beyond imagination. Assoc Prof Ryan demands high standards from everyone, himself included. He was supportive in every aspect of my life during my candidature. My association with him as my supervisor did not only involve lengthy discussion about topics relevant to the thesis, or countless hours of his time to teach me how to think and write scientifically (or exchanges of emails at night or early hours in the morning) but discussions that made me a wiser person at the end of the candidature. I only wish I could be a superuisor to my prospective students as he was to me. I am grateful to Professor Janet Hiller for the chance she gave me to further my studies. ln her "Epidemiological Research Methods" course not only issues relating to research were taught, but also, the most controversial issues relating to the "health of the public" could be openly discussed. N Jaross V PhD Thesis The support of the administrative staff in the department, Linda Code, Florence Kalambokas, Angela Noble and Emma Steggles is also acknowledged. While not my supervisor, the help received from Dr Elizabeth Elliot, Lecturer in the Department of Public Health is greatly appreciated. During my candidature it was my privilege to serve as the postgraduate student representative. During this time friendships were formed that will accompany us during our lives. I am grateful for the friendship formed with students in the department, in particular (in alphabetical order) Tessa Hillgrove, Natasha Howard, Henry Jones, Luise Ledet, Ellie Rosenfeld and Cindy Stern. And finally, this thesis could have never been completed without the support of the "Massada family" (the community of my children's school); without the love, kindness and support of my daughters, Katalin and Marianna Jaross and my mother, Eva Jaross. N Jaross VI PhD Thesis Abstract Diabetes has reached epidemic proportions among Aboriginal Australians (Daniel et a|2002). This thesis presents results from the Katherine Region Diabetic Retinopathy Study (1993 -1996). These results provide the first detailed information on the basic epidemiology of diabetic retinopathy and impaired vision in an Aboriginal diabetic population. Results of the Katherine Region Diabetic Retinopathy (KRDRS) show that while on the basis of overall prevalence alone, diabetic retinopathy may not seem as major a complication in Aboriginal communities as in the general Australian diabetic population, the highest reported prevalence of clinically significant macula edema (CSME) in Australia, and vision-threatening retinopathy (VTR) prevalences similar to or higher than in the Newcastle Study of Diabetic Retinopathy (NSDR) (Mitchell 1980) suggest othenruise. This is especially so if prevalences are adjusted for previous laser treatment. On the basis of the annual incidence rate the progression of diabetic retinopathy may seem to be slower than in the non-Aboriginal community in Australia, however the much higher incidence of VTR compared to the NSDR suggest otherwise. More so, since the time since diagnosis of diabetes in subjects and the observation period in the KRDRS was much shorter than in the NSDR (Mitchell 1980, 1985, 1990). The prevalence of blindness in the Aboriginal diabetic population of the KRDRS was as high as in the non-Aboriginal Australian population approximately 30 years older (Newland 1996, Taylor 1997, Wang 2000). The major cause of impaired vision, monocular and binocular blindness was cataract, just as it was in Taylor's report 25 years ago in an Aboriginal N Jaross vlt PhD Thesis Australian population (Taylor 1977). Data from the KRDRS also show that impaired visual acuity, irrespective of whether ocular pathologies other than diabetic retinopathy are present, is a poor indicator of diabetic retinopathy, maculopathy, CSME or VTR. On the basis of results from the KRDRS annual screening for diabetic retinopathy in Aboriginal communities is recommended. The method of screening selected must allow case identification to be followed by treatment. The individual needs of Aboriginal communities together with the spectrum of ocular pathology must also be considered. Analysis of the KRDRS study populations in 1993 and 1996 shows that the burden on ophthalmic services will increase. The geographic and cultural environment of the people and the epidemiology of the disease in Aboriginal communities present health service planners and clinicians with substantial challenges related to surveillance, treatment and follow-up. N Jaross viii PhD Thesis TABLE OF CONTENTS DECLARATION lt ACKNOWLEDGEMENTS iti ABSTRACT vii TABLE OF CONTENTS ix LIST OF FIGURES xiii LIST OF TABLES xiii LIST OF ABBREBVIATIONS xxi Chapter 1 1.0 lntroduction 1-1 Chapter 2 2-1 2.0 Objectives of the study 2-1 Chapter 3 3-1 3.0 Literature review 3-1 3.1 The epidemiology of diabetes in the Aboriginal and Torres Strait lslander community 3-1 3.2 Overview of diabetic retinopathy 3-6 3.2.1 Diabetic retinopathy in AboriginalAustralian