nhms_2019.pdf

Non-Communicable Diseases: Risk Factors and other Health Problems 247 Child Functioning

National Health and Morbidity Survey 2019 Technical Report − Volume I 248 Child Functioning Contributors to this section: Chan Ying Ying, Noor Ani Ahmad, Rajini Sooryanarayana, Nor’Ain Ab Wahab, Rasidah Jamaluddin, Norazizah Ibrahim Wong, Noor Safiza Mohamad Nor, Salimah Othman, Yusniza Mohd Yusof Introduction Children with disabilities are among some of the most marginalised groups in society. They face institutionalisation, abandonment or neglect. Their disabilities also place them at a higher risk of physical abuse, and often exclude them from receiving proper nutrition or humanitarian assistance during emergencies [1]. The World Health Organization (WHO) estimates that there are 93 million children (or 1 in 20; 5.1%) aged 0 to 14 years living with moderate or severe disabilities worldwide, of which 13 million (0.7%) have severe disabilities [2]. The prevalence of child disabilities in low- and middle- income countries varies from 0.4% to 12.7% depending on the study and assessment tools [3]. Global child disability data are generally non-comparable as it uses different tools, methodologies and disability definitions. In order to address this need, The United Nations Children’s Fund (UNICEF) and The Washington Group on Disability Statistics (WG) have developed a new tool to measure child functioning and disability. The tool assesses functional difficulties in different domains including hearing, vision, communication/ comprehension, learning, mobility and emotions of children aged 2-17 years based on their parents’ / guardians’ perception. In line with the United Nation’s Sustainable Development Goals (SDG) and the “Leave no one behind” core principle of the SDG agenda, the UNICEF/WG Child Functioning Module was included in the National Health and Morbidity Survey (NHMS) 2019 to collect information on child functioning and disability in the Malaysian population. As the UNICEF/WG Child Functioning Module was used for the first time in this national survey, the instrument underwent forward-backward translation of the English version into the Malay language and cognitive interview testing among parents / guardians of children aged 2-17 years according to the WG standard guidelines [4,5] prior to the actual survey, in order to make it suitable to be used in NHMS 2019 among the Malaysian population. Objectives

1. To determine the prevalence of overall functional difficulty (functional difficulty in at least one domain) among children aged 2-17 years in Malaysia by socio- demographic characteristics
2. To determine the prevalence of use of assistive devices among children aged 2-17 years Methods Both English and Malay versions of the UNICEF/WG Child Functioning Module were used to measure functional difficulties among children aged 2-17 years. The UNICEF/WG Child Functioning Module comprised of two questionnaires: • Questionnaire for age 2-4 years (16 questions) • Questionnaire for age 5-17 years (24 questions) For the purpose of analysis, data for children aged 2-17 years were analysed as a whole in this survey. “Overall functional difficulty” was reported as the final outcome and was defined as functional difficulty in at least one domain. The questionnaires were administered to parents / guardians with children aged 2-17 years via face-to-face interviews by trained research assistants. Variable Definition Functional difficulty in individual domain is defined as follows: • for children aged 2-4, the definition includes “a lot of difficulty” or “cannot do at all” for questions in a particular domain, and “a lot more” for the question on controlling behaviour. • for children age 5-17, it includes “a lot of difficulty” or “cannot do at all” for questions in a particular domain, and “daily” for the questions on anxiety and depression.

Non-Communicable Diseases: Risk Factors and other Health Problems 249 Findings The prevalence of overall functional difficulty (functional difficulty in at least one domain) among children aged 2-17 years in Malaysia was 4.7% (95% CI: 3.91, 5.71). The prevalence was higher in rural areas [5.4% (95% CI: 3.87, 7.42)] compared to urban areas [4.5% (95% CI: 3.57, 5.66)], but the difference was not statistically significant. Children from older age groups (10-17 years) [5.8% (95% CI: 4.54, 7.44)] reported a higher prevalence compared to children from younger age groups (2-9 years) [3.6% (95% CI: 2.71, 4.88)]; however, the difference was not statistically significant. There were also no significant differences across sex, parent’s marital status and household income group. The prevalence of overall functional difficulty was found to be higher among children whose mothers who had no formal/ primary education [6.2% (95% CI: 4.41, 8.66)] compared to children whose mothers who had tertiary education [2.7% (95% CI: 1.51, 4.66)], but the difference was not statistically significant. Our findings showed that children from households whose heads of household had no formal / primary education [5.7% (95% CI: 3.98, 8.15)] had a significantly higher prevalence of overall functional difficulty compared to children from households whose heads of households had tertiary education [1.9% (95% CI: 0.91, 3.77)]. Regarding the use of assistive devices among children aged 2-17 years, the prevalence of wearing glasses, using hearing aids, and using equipment or received assistance for walking were 11.3% (95% CI: 9.53, 13.43), 0.8% (95% CI: 0.50, 1.19), and 0.5% (95% CI: 0.29, 0.81) respectively.
Conclusion The national prevalence of overall functional difficulty among children aged 2-17 years (4.7%) is comparable to the global prevalence of childhood disability (5.1%). For the first time, the use of UNICEF/WG Child Functioning Module in the NHMS 2019 was able to provide reliable baseline data on functional difficulties among children in Malaysia which is internationally comparable. Ultimately this information will be important for the designing of strategies to improve the development and well-being of children in Malaysia. Recommendations Functional difficulties occurring in children should be further studied to determine their health needs. Awareness and care for this population should be strengthened and extended to parents or guardians especially those with low education levels. Healthcare providers should be adequately trained to detect risk factors and early signs of child disability, be able to manage appropriately and have adequate resources to ensure the success of disability health. References 1. United Nations International Children’s Emergency Fund (UNICEF). Children and young people with disabilities fact sheet, 6 (May 2013). Available at: https://www.unicef.org/disabilities/files/Factsheet_A5__ Web_NEW.pdf 2. World Health Organization (WHO) & World Bank. World report on disability, 2011. WHO, Geneva. Available at: https://www.who.int/ disabilities/world_report /2011/report.pdf 3. Maulik PK, Darmstadt GL. Childhood disability in low- and middle- income countries: Overview of screening, prevention, services, legislation, and epidemiology. Pediatrics, 2007; 120: S1-S55. 4. The Washington Group on Disability Statistics. Methodology: Translation of the Washington Group Tools. Available at: http://www. washingtongroup-disability.com/wp-content/uploads/2016/12/WG- Document-3-Translation-of-the-Washington-Group-Tools.pdf 5. The Washington Group on Disability Statistics. Methodology: Cognitive testing interview guide. Available at: http://www.washingtongroup- disability.com/wp-content/uploads/2016/01/appendix3_cognitive_test. pdf

National Health and Morbidity Survey 2019 Technical Report − Volume I 250 Table 18.1: Prevalence of Overall Functional Difficulty (At Least One Domain) Among Children Aged 2-17 Years in Malaysia by Socio-Demographic Characteristics (n=4,576) Sociodemographic
Characteristics Count Estimated
Population Prevalence
(%) 95% CI Lower Upper MALAYSIA 201 362,601 4.7 3.91 5.71 Location Urban 117 253,184 4.5 3.57 5.66 Rural 84 109,416 5.4 3.87 7.42 Sex Male 99 186,105 4.9 3.77 6.27 Female 102 176,496 4.6 3.57 5.90 Age Group (Years) 2–9 90 140,027 3.6 2.71 4.88 10–17 111 222,573 5.8 4.54 7.44 Ethnicity Malaya 140 237,280 4.8 3.87 6.01 Chinese 9 19,620 1.7* 0.71 4.07 Indian 12 19,190 4.8* 2.48 9.14 Bumiputera Sabah 25 47,244 8.3 4.52 14.63 Bumiputera Sarawak 8 28,317 7.7 3.83 14.75 Others 7 10,950 4.1 1.74 9.25 Parent's Marital Status Single / Widow(er) / Divorcee 24 38,622 4.3 2.60 7.14 Married 174 320,869 4.8 3.90 5.89 Mother's Education Level No Formal / Primary education 57 117,809 6.2 4.41 8.66 Secondary Education 106 187,618 4.9 3.84 6.29 Tertiary Education 34 49,423 2.7 1.51 4.66 Table 18.2: Prevalence of Use of Assistive Devices Among Children Aged 2-17 Years in Malaysia (n=4,576) Domain of Assistive Devices Count Estimated
Population Prevalence
(%) 95% CI Lower Upper Wear Glasses 403 933,208 11.3 9.53 13.43 Use Hearing Aid 37 63,410 0.8 0.50 1.19 Use Equipment or Receive Assistance for Walking 24 40,200 0.5 0.29 0.81 Sociodemographic
Characteristics Count Estimated
Population Prevalence
(%) 95% CI Lower Upper Head of Household’s Education Level No Formal / Primary education 53 103,226 5.7 3.98 8.15 Secondary Education 106 193,761 5.5 4.21 7.04 Tertiary Education 25 32,601 1.9 0.91 3.77 Household Income Group Less than RM 1,000 24 59,604 6.8 3.99 11.29 RM 1,000 - RM 1,999 47 85,670 6.0 4.23 8.42 RM 2,000 - RM 3,999 77 118,390 5.0 3.66 6.72 RM 4,000 - RM 5,999 25 48,636 3.9 2.24 6.59 RM 6,000 - RM 7,999 14 24,427 3.4 1.56 7.28 RM 8,000 - RM 9,999 8 14,865 4.1 1.93 8.35 RM 10,000 and above 6 11,009 1.7 0.64 4.66 Household Income Quintile Quintile 1 42 93,858 6.2 4.20 9.06 Quintile 2 54 85,977 5.7 3.94 8.16 Quintile 3 44 68,736 4.7 3.14 6.92 Quintile 4 33 63,729 3.9 2.45 6.20 Quintile 5 28 50,300 3.3 1.85 5.68 Household Income Category Bottom 40% 151 260,995 5.3 4.22 6.57 Middle 40% 40 80,826 3.8 2.44 5.94 Top 20% 10 20,780 3.5 1.89 6.24 *Prevalence with high RSE, interpret with caution a - Malay includes Orang Asli Non-Communicable Diseases: Risk Factors and other Health Problems 251 Epilepsy

National Health and Morbidity Survey 2019 Technical Report − Volume I 252 Epilepsy Contributors to this section: Fong Si Lei, LeeAnn Tan, Lim Kheng Seang, Nabilah Hanis Zainuddin, Raymond Azman Ali, Santhi Datuk Puvanarajah, Suganthi Chinnasami, Tee Sow Kuan Introduction The national prevalence of epilepsy is a strong indicator reflecting the magnitude of epilepsy in the country, which indicates the number of people requiring treatment. Malaysia is one of only two countries in the Southeast Asia region which has no national epilepsy prevalence estimates to-date. Reliable estimates of the prevalence of epilepsy is important to determine the treatment gap of epilepsy in Malaysia in order to guide adequate and appropriate allocation of resources to reduce this gap effectively; they also serve as a useful baseline for future epidemiological studies on epilepsy. Although the World Health Organization (WHO) estimates that 8 out of 1000 have this disease [1], the prevalence of epilepsy varies among countries and is usually higher in developing countries. The lifetime prevalence of epilepsy in Asia varied from 1.5 to as high as 14.0 per 1000 population in Asian populations [2,3]. A 1993 study in Singapore showed an epilepsy prevalence rate of 3.8 per 1000 population [4] while in 1997, Kun et al reported lifetime prevalence of 4.9 per 1000 population by the age of 18 years old through screening of Singaporean male residents prior to their enlistment for military service [5]. Cambodia, in its first ever door-to door survey in Prey Veng province, revealed a lifetime prevalence of 5.8 per 1000 population [6]. Thailand and Laos have comparable epilepsy prevalence rates of 7.2 and 7.7 per 1000 population respectively [7,8]. Farther afield, the prevalence of epilepsy was found to be much higher in Latin America, with a lifetime prevalence of 17.8 per 1000 population [9]. Similarly, high rates were also observed in sub-Saharan Africa with an age-dependent prevalence, ranging from as low as 3.1 per 1000 population in those older than 60 years to as high as 11.5 per 1000 population among those aged 20 to 29 years [10]. The prevalence of epilepsy in Western countries was estimated to be 6 per 1000 population [2,11]. Objective The objective of the study is to determine the prevalence of epilepsy in Malaysia. Methods N.B. The Epilepsy module used a different sample than the rest of the modules in Volume I of this report. Please refer to Volume II (Healthcare Demand) — General Findings for further details on the sample characteristics applicable to this module. The screening questionnaire used is a validated screening instrument for the ascertainment of epilepsy adapted from Ottman et al [12], which was translated into Malay and subsequently validated by Fong et al [1]. The questionnaire was administered to eligible respondents of all ages in NHMS 2019. Each question has three categories of response (Yes, No, Possible) that covers the spectrum of possibility of having symptoms suggestive of epilepsy. A “Yes” or “Possible” response is considered a positive response while a “No” response is considered a negative response. The definition for a positive screen and suspected epilepsy employed in this report is a positive response to either Question 2 (Other than the seizures you had because of a high fever, have you ever had, or has anyone ever told you that you had, a seizure disorder or epilepsy?) or Question 3A (Other than the seizures you had because of a high fever, have you ever had, or has anyone ever told you that you had, a seizure, convulsion, fit or spell under any circumstances?) . This particular definition yielded a sensitivity of 85.8% and a specificity of 96.6% in the aforementioned validation study by Fong et al [1]. Findings According to the definition employed in this study, the overall prevalence of epilepsy in Malaysia (based on initial screening) is 1.7% (95% CI: 1.35, 2.02). There was a higher prevalence observed among those who were single [2.3% (95% CI: 1.81, 2.99)] compared to those who were married. A higher prevalence was observed among those aged 10-19 years [2.9% (95% CI: 1.90, 4.43)] and those belonging to households in the B40 income group [1.8% (95% CI: 1.46, 2.32)]. Non-Communicable Diseases: Risk Factors and other Health Problems 253 Conclusion The prevalence of epilepsy in Malaysia (based on initial screening) is slightly higher than that reported in the rest of the Asian countries. One of the possible reasons includes the use of the present definition of a positive screen i.e. a positive response to either Question 2 (epilepsy excluding febrile seizure) or Question 3A (a seizure, convulsion, fit or spell under any circumstances excluding febrile seizure), as utilised in this report. With this definition, we may have included additional patients with acute symptomatic seizures who do not fulfil the International League Against Epilepsy (ILAE) 2014 Operational Clinical Definition of Epilepsy. Furthermore, the prevalence is only based on the screening questionnaire, which subsequently will require diagnostic confirmation by a neurologist. In addition, various international studies on the prevalence of epilepsy used different screening questionnaires which were skewed towards generalised epilepsy rather than ours, which covers a broader symptomatology to include both generalised and focal epilepsy. Otherwise, our prevalence should be comparable to other Asian countries. Last but not least, differences in aetiology of epilepsy for example, increased risk of endemic central nervous system infections: neurocysticercosis, Japanese encephalitis, tuberculosis and human immunodeficiency virus (HIV) infection, can explain the higher prevalence in less developed countries.   Recommendations

1. To raise awareness on epilepsy by introducing it at the school level.
2. To reduce the stigma of epilepsy through public health talks/radio talk shows, delivered by neurologists.
3. To educate the general public on the simple safety measures they can take, when encountering someone who is having a seizure, while waiting for first responders to the scene.
4. To reduce treatment gap via public awareness campaigns on the availability of treatment at hospitals and determining national policies on resource allocations for the various treatment options.
5. To periodically conduct estimations of the national prevalence of epilepsy with the aim of monitoring the impact of such improved policies, to reduce the treatment gap over time. References

Fong S-L, Lim K-S, Tan L, Aris T, Khalid RA, Ali RA, et al. Validation of Malay brief screening instrument for ascertainment of epilepsy. Epilepsy Behav. 2019 Aug 1;97:206–11. 2. Mac TL, Tran D-S, Quet F, Odermatt P, Preux P-M, Tan CT. Epidemiology, aetiology, and clinical management of epilepsy in Asia: a systematic review. Lancet Neurol. 2007 Jun;6(6):533–43. 3. Trinka E, Kwan P, Lee B, Dash A. Epilepsy in Asia: Disease burden, management barriers, and challenges. Epilepsia. 2019;60(S1):7–21. 4. Puvanendran K. Epidemiology of epilepsy in Singapore. Ann Acad Med Singapore. 1993 May;22(3 Suppl):489–92. 5. Kun LN, Ling LW, Wah YW, Lian TT. Epidemiologic study of epilepsy in young Singaporean men. Epilepsia. 1999 Oct;40(10):1384–7. 6. Preux P-M, Chea K, Chamroeun H, Bhalla D, Vannareth M, Huc P, et al. First-ever, door-to-door cross-sectional representative study in Prey Veng province (Cambodia). Epilepsia. 2011 Aug;52(8):1382–7. 7. Asawavichienjinda T, Sitthi-Amorn C, Tanyanont W. Prevalence of epilepsy in rural Thailand: a population-based study. J Med Assoc Thail Chotmaihet Thangphaet. 2002 Oct;85(10):1066–73. 8. Tran D-S, Odermatt P, Singphuoangphet S, Druet-Cabanac M, Preux P-M, Strobel M, et al. Epilepsy in Laos: knowledge, attitudes, and practices in the community. Epilepsy Behav EB. 2007 Jun;10(4):565–70. 9. Burneo JG, Tellez-Zenteno J, Wiebe S. Understanding the burden of epilepsy in Latin America: a systematic review of its prevalence and incidence. Epilepsy Res. 2005 Sep;66(1–3):63–74. 10. Paul A, Adeloye D, George-Carey R, Kolčić I, Grant L, Chan KY. An estimate of the prevalence of epilepsy in Sub–Saharan Africa: A systematic analysis. J Glob Health. 2012 Dec; 2(2). 11. Yemadje L-P, Houinato D, Quet F, Druet-Cabanac M, Preux P-M. Understanding the differences in prevalence of epilepsy in tropical regions. Epilepsia. 2011 Aug;52(8):1376–81. 12. Ottman R, Barker-Cummings C, Leibson CL, Vasoli VM, Hauser WA, Buchhalter JR. Validation of a brief screening instrument for the ascertainment of epilepsy. Epilepsia. 2010 Feb;51(2):191–7. 13. Abdul Manan MM, Várhelyi A. Motorcycle fatalities in Malaysia. IATSS Res. 2012 Jul 1;36(1):30–9.