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Annual Report of the Diabetes in Children and Adolescents Registry

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Annual Report of the Diabetes in Children and Adolescents Registry 2nd ANNUAL REPORT OF THE DIABETES IN CHILDREN AND ADOLESCENTS REGISTRY 2006 -2008 EDITORS: Fuziah Md Zain Janet Hong Yeow Hua Wu Loo Ling Fatimah Harun Rahmah Rasat Muhammad Yazid Jalaludin Mohamad Adam Bujang Premaa Supramaniam 2nd ANNUAL REPORT OF THE DIABETES IN CHILDREN AND ADOLESCENTS REGISTRY 2006-2008 Editors Fuziah Md Zain Janet Hong Yeow Hua Wu Loo Ling Fatimah Harun Rahmah Rasat Muhammad Yazid Jalaludin Jamaiyah Haniff Jaya Purany Stanley Ponniah Mohamad Adam Bujang Premaa Supramaniam DiCARE is funded by a grant from: Ministry of Health, Malaysia (MOH) Malaysian Paediatric Association (MPA) Malaysian Endocrine and Metabolic Society (MEMS) Published by: Diabetes in Children and Adolescents Registry, Malaysia 1st Floor, MMA House 124, Jalan Pahang 53000 Kuala Lumpur Malaysia. Telephone : (603) 40443060 Direct Fax : (603) 40443080 E-mail : [email protected] Website : www.acrm.org.my/dicare Important information: This report is copyrighted. It may however be freely reproduced without the permission of the Diabetes in Children and Adolescents Registry. Acknowledgement would be appreciated. Suggested citation is: Fuziah Md Zain, Janet Hong Yeow Hua, Wu Loo Ling, Fatimah Harun (Eds). 2nd Report of Diabetes in Children and Adolescents Registry (DiCARE) 2006-2008. Kuala Lumpur 2012. This report is also published electronically on the website of the Diabetes in Children and Adolescents Registry at: www.acrm.org.my/dicare ISSN ………………..1985-4900 October 2012 © Diabetes in Children and Adolescents Registry, Malaysia Publisher: Clinical Research Centre Ministry of Health, Malaysia Kuala Lumpur 2012 FOREWORD As the Chairperson and Principal Investigator of Diabetes in Children and Adolescent Registry (DiCARE), I present the second report of the DiCARE database. This report is an analysis of 408 patients with diabetes from 34 hospitals in Malaysia in year 2006-2008. It is the collaborative effort of hospitals under the Ministry of Health (MOH) Universiti Kebangsaan Malaysia Medical Centre (UKMMC), University Malaya Medical Centre (UMMC) and Clinical Research Centre. The registry will be later expanded to involve all general hospitals nationwide as well as private and army hospitals. The case report form (CRF), the notification form and the annual census form were reviewed after the first technical report was published to further simplify data collection. It includes personal profile of patients, their clinical presentation, duration and type of diabetes, management, complications and outcomes. The result of this registry will be presented in the executive summary. On behalf of DiCARE, we express our sincere appreciation for the writing effort and commitment of all those who were involved in this registry including the hospital staff concerned. During the conduct of this data collection, we continued to identify limitations that required improvement. It was unfortunate that DiCARE was suspended from 2008- 2009 due to financial constraint but was revived in 2011. We then successfully conducted two workshops in March and November 2011 to train new source data providers for data collection. Subsequently, we have seen an encouraging increase in the number of participation from more MOH hospitals. Results presented in this report may not reflect our national data as the participation is still not nationwide. Finally, we hope that we will still continue to provide comprehensive and ongoing database that will enable us to improve the quality of diabetes care among the young in Malaysia. Dr Fuziah Md Zain Chairperson & Principal Investigator On behalf of DiCARE Study Group ACKNOWLEDGEMENT The Diabetes in Children and Adolescents Registry (DiCARE) thank the following individuals: Our source data providers who are paediatricians, physicians, staff nurses and medical assistances from the government and university hospitals, for their commitment, hard work and timely data submission The Paediatrics and Internal Medicine departments, Ministry of Health hospitals The Paediatrics and Internal Medicine Departments, University hospitals Clinical Research Centre, Kuala Lumpur Most importantly, our special thanks to all members of the expert panels for their expertise and for devoting their valuable time and effort in preparing, analyzing, writing and editing the various chapters. Finally, we acknowledge the continuous commitment and contribution of the registry office staff to DiCARE. Special appreciation goes to Ms Anuar ‘Alawiah Othman, the Registry Manager, Mr Kamarul Zaman Zakarsi, Ms Nurul Naquiia Kamaruzaman, Ms Arina Mohamad, Ms Samirah Taufiq, Ms Noor Akma Hassim, Ms Tee Chin Kim, Mr Naren Kumar A/L Surendra, Ms Safura Izyani Kamarudin and Ms Nurul Shuhada Mohd Ali for their assistance in report editing. We also thank all those whose names are not mentioned here for services rendered during data collection and data entry. THE DIABETES IN CHILDREN AND ADOLESCENTS REGISTRY (DiCARE) What Is It About and Rationale The Diabetes in Children and Adolescents Registry (DiCARE) is a Ministry of Health (MOH) supported registry whose aim is to collect information about diabetes mellitus in children and adolescents in Malaysia. It was officially launched on 30th August 2006 and was the first step towards establishing a national diabetes mellitus registry among children and adolescents. The objectives are to: 1. Determine the number and the time trend of diabetes mellitus in children and adolescents in Malaysia 2. Determine the socio demographic profiles of these patients to better identify high risk groups in our Malaysian population 3. Determine the number, evaluate and monitor the outcomes of intervention in terms of metabolic control and complications 4. Stimulate and facilitate research using this registry DiCARE is an ongoing real-time register of case series patients with various types of diabetes mellitus aged below 18 years seen in the participating Medical and Paediatric Clinics of the Ministry of Health hospitals and in the local university hospitals. The source data providers (SDP) first filled up the case report format (CRF) of notification and then the annual census CRF at the end of each year. The registry captured the required data via eDiCARE, a web-based case reporting system coordinated by the Clinical Research Centre, Hospital Kuala Lumpur. All diabetes cases among children and adolescent should be notified to this registry, and thereafter updated yearly at year end to monitor their diabetes control and complications. th DiCARE was piloted on 7 April 2006 in four centres, i.e. University Malaya Medical Centre (UMMC), Universiti Kebangsaan Malaysia Medical Centre (UKMMC), I Hospital Putrajaya (HPJ) and Hospital Kuala Lumpur (HKL). DiCARE was launched nationwide in August 2006 to act as a uniform data collection system and subsequently to provide a profile of diabetes in the young in this country. We published the 1st Annual Report of DiCARE 2006-2007 whereby 240 patients were reported. Their age ranged from 1.1 - 19.8 years, with no gender predominance (45.8% boys and 54.2% girls). The mean (SD) age at diagnosis was 7.7 (0.6) years old with mean (SD) duration of diabetes of 3.9 (0.5) years. In terms of ethnicity, Malays constituted 45.4%, Chinese 32.5% and Indians 19.2%. Of these patients, 69.2% (166/240) have type 1 diabetes mellitus (T1DM) and 17.5% (42/240) type 2 diabetes mellitus (T2DM) while 7.5% have other types of diabetes. The diagnoses were based on incidental, clinical and/or biochemical data. Most patients (80.4%) practised home blood glucose monitoring. At least once in the past one year, 66.7% patients were seen by dietitian, 50.0% by diabetes educator and 45.0% by ophthalmologist. However, only 10% patients carried a medic alert. The 2006 annual census on 185 patients revealed poor glycaemic control based on the reported mean HbA1c levels of 9.8%. Of these HbA1c level, 6.0% (3/50) T1DM patients and 20.0% (4/20) T2DM patients achieved target HbA1c of less than 7.5%. The first report’s sample size was small and would not represent the population. In addition, under reporting by the source data providers were a major problem, causing an underestimation of the incidence and prevalence of diabetes in the young. There can be various probable reasons for under reporting of cases and these include the lack of awareness, limited infrastructure or manpower to notify and submit year-end census. During the study period, some sections in the CRF that were found to be unclear or confusing were discussed among the co-investigators and were subsequently improved. With these objectives and findings, we hope that the registry will assist the policy makers in planning and improving diabetes care among the young in Malaysia. II Organization of DiCARE Sponsor Governance Board Expert Panel DiCARE Office CRC Technical Support Source Data Providers User group Sponsors : The DiCARE is sponsored by the the following organizations: Ministry of Health (MOH) Malaysian Paediatric Association (MPA) Malaysian Endocrine and Metabolic Society (MEMS) III DiCARE Governance Board (cum Expert Panel Members) 2006 –2008 Chairperson Dr Fuziah Md Zain Members Prof Dr Fatimah Harun Prof Dr Wu Loo Ling Dr Jamaiyah Haniff Dr Janet Hong Yeow Hua Assoc Prof Dr Rahmah Rasat Assoc Prof Dr Muhammad Yazid Jalaludin Dr Soo Thian Lian DiCARE Office Staff Registry Manager Ms Anuar ‘Alawiah Othman Registry Assistant Ms Noor Akma Hassim CRC Technical Support Staff Director Dr Goh Pik Pin Clinical Epidemiologist Dr Jamaiyah Haniff Dr Damenthi Nair Dr Jaya Purany
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