National Thalassaemia Screening Program , Malaysia

NATIONAL THALASSAEMIA SCREENING PROGRAM

CONTENT

PAGE 1. INTRODUCTION 1 2. THALASSAEMIA SITUATION IN MALAYSIA .........................................

33. NATIONAL THALASSEMIA SCREENING 3.1OBJECTIVES 33.2STRATEGIES

44. ETHICAL PRINCIPLES

75. MECHANISMS FOR IMPLEMENTATION

7 6. MONITORING AND EVALUATION

9 7. REFERENCESAPPENDICES

Appendix A: Guidelines for thalassemia screening at health clinic..

10

Appendix B:Guidelines for provision of comprehensive

care in pregnancy

16

Appendix C:Guidelines for Cascade screening for thalassaemia

index cases and carriers

18

Appendix D:Garis panduan Sambutan Hari Talasemia Antarabangsa..

20FLOW CHARTS / TABLES

Rajah 1 :Carta Alir Makmal Saringan Talasemia

(Peringkat Perkhidmatan Kesihatan Primer)22

Rajah 2 :Carta Aliran Penyaringan Cascade

(Peringkat Perkhidmatan Kesihatan Primer dan Sekunder)..23

Rajah 3 :Carta Aliran Penyiasatan Anaemia di kalangan Ibu Hamil

24

Jadual 1:Interpretasi Kombinasi Lazim Keputusan Makmal

dan Kaunseling Pasangan258. ACKNOWLEDGEMENTS..26NATIONAL THALASSAEMIA SCREENING

PROGRAMME

1.INTRODUCTION

1.1 Thalassemia and abnormal heamoglobins are the most common genetic disorders world wide. It is estimated that over 300,000 affected children are born each year, most with sickle cell disease, while 60,000 70,000 are born with beta thalassemia major.1.2 In Thalassemia, the normal in formation of red blood cells is affected. This is due to reduced synthesis of globin chains resulting in ineffective erythropoesis, chronic hemolysis and anemia.1.3 Defective genes can be inherited from either parents. There are two main types of thalassaemia, alpha or beta. Clinically, it can manifest as thalassaemia minor (carrier) or thalassaemia major (patient). Most thalassemia minors or carriers are not aware of their genetic status because the clinical signs are not well defined. They will only know after undergoing blood tests. Likewise a child with thalassaemia major will appear normal at birth. However, the signs and symptoms of anemia will begin to develop from 3 months onwards and will progress chronically. 1.4 Although being carrier of the thalassaemia trait has no adverse health effects, if a carrier has a child with another carrier, every pregnancy will have a 25% risk of producing a thalassaemia major, 50% risk of producing a thalassaemia monir or carrier and 25% risk of producing a normal child. 1.5 Patients of thalassaemia major require, life-long blood transfusion to maintain haemoglobin levels of above 10 gm%. Patients also require regular chelation therapy to prevent the effects of iron accumulation, which has to be administered daily in high doses. Psychosocial support is important to help patients and parents cope with the physical demands of the disease. Provision of multidisciplinary care will prevent and manage complications in vital organs such as endocrine glands, liver and heart. The quality and quantity of treatment is directly linked to the patients quality and length of life. 1.6 Fatalities due to untreated or inadequately treated thalassaemia is high. There are currently no local data on survival studies in Malaysia, but early deaths due to complications are not uncommon observations in the local hospital practice. International studies on survival in thalassaemia major showed that survival ranges from 15 29 years for patients treated at various specialist centres in Europe. The major cause of death is due to cardiomyopathy secondary to iron accumulation in the heart. The other significant causes of death are infection and liver disease. 1.7 Thalassaemia in general constitutes a major public health problem as seen in countries with high prevalence of the condition. Developing a prevention programme is important in reducing the birth of blood transfusion dependent thalassaemia, in curbing the cost implications in the provision of optimal care for patients and in alleviating life-long socio economic burden on patients, families and government. The appropriate strategy for initiating any thalassaemia prevention programme depends on the local situation which includes cultural, religious and ethical practices. Therefore an effective thalassaemia service delivery is by integrating the services at all levels of health care so as to take full advantage of the existing resources and maximize efficiency. 1.8 Prevention is cost effective. Experiences from Cyprus, a country which has successfully reduced the thalassaemia prevalence indicated the cost of 8 weeks prevention was equivalent to the cost of 1 week treatment for thalassaemia population. Cost benefit analysis in the United Kingdom, Sardinia, Greece and Canada have shown that the cost of a nationwide thalassaemia prevention programme are trivial compared with the benefits of reducing treatment cost. In United Kingdom, the estimated cost for comprehensive treatment of beta thalassaemia major ranges from 188,000 pounds to 226,000 pounds. 1.9 The approach to dealing with the thalassaemia problem is to prevent and control the birth of new cases. The World Health Organization recommended a comprehensive strategy combining best possible patient care with prevention through community information, carrier screening and counseling. In societies where prenatal diagnosis os available and possible, high risk couples request prenatal diagnosis and this approach greatly reduces the numbers of affected births.

2. THALASSAEMIA SITUATION IN MALAYSIA

2.1 Thalassaemia is the commonest inherited blood disorder in Malaysia. Even though the carrier rate is only at the level of 3-5%, intervention is important because of the impact of the disease and its treatment on the patients, families and nation. There are an estimated number of 120 350 babies born with thalassaemia major each year, and at one time there are more than 3,200 registered transfusion dependent patients. This number will cumulatively increase every year posing enormous psychological, social and economic constraints not only to patients and families, but also to government in ensuring optimal care.2.2 In 2004, the Ministry of Health established the Thalassaemia Prevention and Control Programme with the objective to reduce morbidity and mortality among the thalassaemia patients; to reduce the prevalence of blood transfusion dependent thalassaemia cases and to create awareness regarding thalassaemia. These will be achieved through strategies such as optimal patient care, adequate and safe blood supply, screening for carries and provision of genetic counseling, provision of prenatal diagnosis, adequate laboratory support, health promotion, development of a National Thalassaemia Patient Registry, interagency collaboration and cooperation, and research and development. 3. THE NATIONAL THALASSAEMIA SCREENING PROGRAMME

3.1 OBJECTIVES

3.1.1 General objective

To identify carriers of thalassaemia in order to assess the risk of an individual having a affected child and to provide information on the options available to avoid such eventuality. 3.1.2 Specific objectives a) To strengthen screening services for thalassaemia among siblings and other family members of index case (cascade screening)

b) To provide screening for thalassaemia in targeted population

c) To provide public education on thalassaemia

d) To provide genetic counseling services at primary health care level

e) To upgrade and expand screening and diagnostic laboratory services

f) To plan and develop prenatal diagnostic services

3.2 STRATEGIES

3.2.1 Strengthening of cascade screening of index case

Cascade screening, also known as inductive screening or extended family testing refers to the heterozygotes testing of relatives of known cases and carriers of thalassaemia. In many countries, this approach has shown to be feasible and has resulted in high pick up rate. It is a powerful means of improving the effiency of carrier identification. This family centred approach is currently being practiced in hospitals providing management of thalassaemia patients in Malaysia. For every case of thalassaemia major detected it is recommended these relatives be tested for carrier status:

Parents and siblings

Uncles and aunties from both fathers and mothers sides

First cousins from both fathers and mothers sides

Voluntary testing of relatives can be done at the respective hospital where the index case is managed or referred to health clinic of choice. It should be free of charge. Relatives identified as carriers should be given genetic counseling. 3.2.2 Target screening

Target screening is restricted to a particular population group or groups. All screening activities should be carried out on a voluntary basis and free of charge.

i) Adolescents and young adults screening

Screening will be offered to all adolescents and young adults, preferably before they are married. In many countries screening of school students above the age of 16 years has been successful without any apparent psychological or social harm, and despite the time lapse between screening, information and pregnancy, the information was well conserved and resulted in testing of the partner. Those detected as carriers will have their parents and siblings screened. Settings that will be utilized for screening are :

Schools school settings have the advantage of reaching a majority of the population and is able to provide increased options to those identified as carriers (i.e. not to marry another carrier.) Screening in schools will be limited to high prevalent areas and will be expanded in phases in tandem with the capacity and capability of primary health care services, namely the school health and laboratory services. A national roll out will be done incrementally.

Camps adolescents and young people in camps such as the Pusat Latihan Khidmat Negara camps and others will be screened.

Health clinics adolescents attending Adolescent Health Clinics will be screened.

ii) Comprehensive care for pregnant women

Women detected for anaemia in early pregnancy will be investigated for thalassaemia. It is to ensure proper and evident-based management of patients, while preparing them on current and subsequent pregnancies. 3.2.3 Training

Genetic counseling is a process of providing information to at-risk individuals, couples an families about a genetic condition in particular information about the diagnosis, recurrence risk, burden of the disorder and the various reproductive options together with helping the families coming to terms with the issues in non-directed manner. A National Training Module for Thalassaemia Counsellors has been developed, and regular training has been conducted since 2006. Teams of health care providers at every state comprising of pediatricians, obstetricians, physicians, family medicine specialists, school health team members, medical assistants, nurses and counselors have been trained using the above module. Echo training is encouraged at state and district level.

3.2.4 Health promotion

Health education and promotion have taken careful reference to local cultural, religious and social factors. Printed materials in 4 main languages are available in Malaysia and there has been initiatives to develop them in dialects for minority groups in Sabah. A national plan of action has been developed since 2005 which include amongst others, the development of health education materials for use in hospitals, health clinics and public campaigns and the recognition of the International Thalassaemia Day as an official national event for public and professional education. The latter activity enhanced collaboration with academic, professional bodies and non government organizations such as thalassaemia societies. Since 2006, thalassaemia is included in the in-service training of science teachers throughout Malaysia.

3.2.5 Strengthening of laboratory services for screening and diagnosis

The parameter to identify carriers is the means corpuscular haemoglobin or MCH, where it is agreed that a values of less than 27 picogram indicates the need for further investigation. Health clinics providing screening services are equipped with hematology analyzers and trained medical laboratory technicians. At the secondary level, automated High Performance Liquid Chromatography (HPLC) and Gel Electrophoresis are made available at designated hospitals laboratories, namely Hospital Pulau Pinang, Hospital Sultanah Bahiyah Alor Setar, Hospital Kuala Lumpur, Hospital Sultanah Aminah Johor Bahru, Hospital Tg. Afzan Kuantan, Hospital Raja Perempuan Zainab II Kota Bahru, Hospital Queen Elizabeth Kota Kinabalu and Hospital Umum Sarawak. Futher confirmation can be made at Institute for Medical Research and Hospital Kuala Lumpur where molecular studies are available.

3.2.6 Development of prenatal diagnostics services

Prenatal diagnosis is any diagnostic procedure used to determine whether a foetus has a genetic abnormality. There is a need to strengthen prenatal diagnosis services for provide options for families with thalassaemia.

3.2.7 Development of monitoring and surveillance system

i) Health Clinic :

Monitoring of screening activities are captured in the existing records in health clinics

Rekod Harian Beban Kerja Klinik Kesihatan RHBKKK/101/2007. This will provide a record of the number of screening tests done daily by respective health care provider at the clinic. Compilation will be done by the senior assistant medical officer

Rekod Keputusan Makmal Saringan Talasemia ST/101/M/2008. This will provide a record of clients by name, date and results based on 3 groups: HB normal MCH>27 pg; Hb normal MCH 27 pg. The record is the responsibility of the respective medical laboratory technician.

Rekod Susulan Saringan Talasemia ST/101/K/2008 a registration of clients screened positive (i.e. MCH below 27 pg) and results of subsequent tests. This record is the responsibility of the respective Family Medicine Specialist or Medical Officer in-charge.

Reten Saringan Talasemia ST/201/K/2008 untuk 6 bulan This is a 6 months summary made by clinic/district/state. It provides the number of tests done and results based on 3 groups: HB normal MCH>27 pg; Hb normal MCH 27pgHb-normal;

MCH27pgHb-low;

MCH27pg

MengandungTidak Mengandung

*Sila catit samada calitan darah (blood smear) dilakukan atau tidak **Sila catitkan samada sample darah dihantar ke hospital atau tidak untuk ujian lanjut.

ST/101/K/2008

REKOD SUSULAN SARINGAN TALASEMIA

Bil.NamaNo. K.P.AlamatTel.JantinaUmurEtnikTarikh hantar HPLCTarikh terima keputusanKeputusan*Tarikh kaunseling ( / HbE Tal)

*Kod keputusan:1. Bukan Pembawa -Talasemia

**Ujian lanjut seperti ujian molekular.

2. Pembawa -Talasemia

3. Pembawa HbE

4. Lain-lain nyatakan

ST/201/M/2008RETEN KEPUTUSAN MAKMAL UNTUK SARINGAN TALASEMIA

Klinik/ Daerah/Negeri

Januari hingga Jun / Julai hingga Disember Tahun :

BulanJantinaKeputusan (Bilangan)

Bilangan kes yang disahkan

Hb normal;

MCH > 27 pgHb normal;

MCH 27pgHb low;

MCH 27pg

LPJumlah

1234567

Nota : Kolum 3 = kolum 1 + kolum 2Jumlah dalam kolum 3 = kolum 4+5+6

APPENDIX B GUIDELINES FOR PROVISION OF COMPREHENSIVE CARE IN PREGNANCY

STRATEGIES

ACTIVITIESACTIONS BY:INDICATORS

1. Health promotion and health education

2. Blood testing.

(Please refer to Rajah 3 and Jadual 1 for algorithm)

3. Monitoring and evaluation

i) Health talk in antenatal clinics pertaining to anemia in pregnancy

ii) Development of pamphlet/poster on maternal health

Full Blood Count to be carried out for all pregnant women at first booking as part of routine blood test. Counseling of couples should be carried out if the results are abnormal.

Antenatal mother

Result Full Blood Count (FBC)

If MCH > 27pg and other blood indices normal, mother will go for normal follow-up If MCH is 27pg, mothers blood will be tested for haemoglobin analysis and iron studies. At the same time, to take husbands blood for FBC

Husband

Result FBC:

If husbands MCH is normal (> 27pg), there will be no follow up for the husband

If husbands MCH is low ( 27pg), his blood will be tested for haemoglobin analysis and iron studies.

Results of blood test:

Please refer to Jadual 1 for subsequent actions.

For couples with abnormal blood results should be referred to O&G specialist for further management and counseling.

Recording of screening activities :i) Rekod Keputusan Makmal Saringan Talasemia

(ST/101/M/2008)

ii) Rekod Susulan Saringan Talasemia

(ST/101/K/2008)

Reporting of screening activities:

i) Reten Saringan Talasemia (ST/201/K/2008)

Public Health Nurse Health Education Division / Family & Health Development Division MOH

FMS/MO/ Public Health Nurse

FMS/MO

FMS/MO

FMS/MO

FMS/MO

Medical Laboratory Technicians

FMS/MO/MA/SN

MA/SN --

100% of pregnant women at 1st booking must do Full Blood Count-

-

-

APPENDIX CGUIDELINES FOR CASCADE SCREENING FOR THALASSAEMIA INDEX CASES AND CARRIERS

STRATEGIES

ACTIVITIESACTIONS BY:INDICATORS

1.Health Promotion All index cases that have been diagnosed must be registered in the National Thalassaemia Registry.Counseling to patients and their parents regarding thalassaemia, treatment, prognosis and risks.

Encouraging parents to disseminate the information on thalassaemia to other close relatives.

Hospitals

-Specialist

-Medical Officer

-Counselor

-Geneticist

(if available) 100% patients and their parents to be given counseling

2.Blood investigation :

i) Father, mother and siblings of index cases

(first degree relatives)

ii) Uncles, aunties and cousins Refer Figure 2 for the flow process on cascade screening.Hospital/ Health Clinics/ Thalassaemia Federation of Malaysia

-Specialist

-Medical Officer

-Counselor

-Health Education Officer

-Trained staff nurse

Medical assistants Number of first degree relative that have been screened (target 100%)

-

Laboratory

Screening tests and confirmatory tests

- Medical lab technician

- Hematologist / Patologist

3.Monitoring and evaluation Recording screening activities through:

i) Rekod Keputusan Makmal Saringan Talasemia (ST/101/M/2008)

ii) Rekod Susulan Talasemia

(ST/101/K/2008)

iii) Rekod Harian Beban Kerja KIinik Kesihatan RHBKKK/101/2007

(for health clinics only)

Reporting screening activities through :

i) Reten saringan talasemia (ST/201/K/2008)

Medical lab technician

Specialist/Medical Officer

Medical assistant/ Trained staff nurse

Medical assistant/ Trained staff nurse

-

APPENDIX D GARISPANDUAN SAMBUTAN HARI TALASEMIA ANTARABANGSA

PENDAHULUAN

Talasemia adalah sejenis penyakit genetik yang mengganggu pembentukan sel-sel darah merah yang normal. Pesakit talasemia menghasilkan sel darah merah yang mudah pecah atau musnah dalam darah. Kekurangan sel darah merah yang normal akan menyebabkan pesakit tersebut sering kelihatan pucat disebabkan paras hemoglobin yang rendah.

Di Malaysia, talasemia merupakan masalah kesihatan yang besar kerana dari beberapa kajian yang telah dijalankan menunjukkan bahawa kadar pembawa gen talasemia adalah di dalam lingkungan 3 hingga 5 peratus atau 1 dalam 20 orang rakyat Malaysia. Dengan itu, dianggarkan seramai 600,000 hingga 1 juta orang rakyat Malaysia adalah pembawa gen ini.

Walau bagaimanapun, talasemia merupakan satu-satunya penyakit genetik yang telah terbukti boleh dicegah dan dikawal sekiranya mendapat sokongan padu daripada masyarakat. Kejayaan program pencegahan dan kawalan talasemia adalah pendidikan kesihatan yang berterusan dengan sokongan dari semua pihak.

Oleh sebab itu, Hari talasemia Antarabangsa akan disambut pada 8 Mei setiap tahun bagi mengukuhkan lagi aktiviti penyebaran maklumat dan pendidikan kesihatan mengenai talasemia serta menyedarkan masyarakat mengenai penyakit ini.

OBJEKTIF

i. Meningkatkan kesedaran dan pengetahuan masyarakat umum mengenai penyakit talasemia, cara pencegahan dan pengawalannya.

ii. Menggalakkan kumpulan sasar menjalani ujian talasemia

iii. Menggalakkan ibubapa member keizinan/kebenaran anak remaja mereka menjalani ujian talsemia.

iv. Mencegah berlakunya diskriminasi terhadap pembawa gen talasemia

v. Mewujudkan rasa tanggungjawab dan tindakan masyarakat terhadap penyakit talasemia di mana setiap individu mempunyai peranan yang perlu dimainkan bagi menyelesaikan masalah ini. AKTIVITI PERINGKAT KEMENTERIAN DAN NEGERI Kumpulan Sasar:

1. Ibubapa 2. Remaja 16 tahun ke atas

3. Golongan dewasa muda

4. Adik-beradik kepada pembawa talasemia

5. Golongan professional

6. Petugas kesihatan

Cadangan Aktivit:

1. Seminar/Kursus

2. Forum awam

3. Ujian saringan talasemia dan kaunseling

4. Pameran kesihatan

5. Kajian pengetahuan, sikap dan tingkahlaku (KAP Study)

6. Kempen derma darah

7. Penglibatan media

8. Lain-lain aktiviti untuk pesakit talasemia dan ibubapa seperti aktiviti riadah.

KERJASAMA PINTAR

Kementerian Kesihatan Malaysia samada di peringkat ibupejabat atau negeri perlu menjalinkan kerjasama pintar dengan Persekutuan Pertubuhan Talasemia Malaysia dan juga Persatuan Talasemia Negeri serta badan-badan professional yang lain seperti Malaysian Association of Pediatric Haematology & Oncology (MASPHO), Malaysian Pediatric Association (MPA) dalam melaksanakan aktiviti-aktiviti berkaitan dengan talasemia bagi mencapai objektif yang telah digariskan. PENILAIAN AKTIVITI

Laporan mengenai aktiviti sambutan Hari Talasemia Antarabangsa peringkat negeri perlu disediakan oleh Pegawai Pendidikan Kesihatan Negeri untuk menilai keberkesanan aktiviti yang telah dilaksanakan. Laporan yang telah lengkap hendaklah dihantar melalui laman web Infosihat (http://www.infosihat.gov.my/)

PENUTUP

Aktiviti semasa sambutan Hari Talasemia Antarabangsa ini adalah sebahagian daripada wadah untuk mencapai objektif seperti yang telah digariskan. Program ini amat wajar dilaksanakan bagi mendedahkan kepada masyarakat tentang penyakit talasemia dan kepentingan menjalani ujian saringan talasemia.

Rajah 1

9.1 Carta Alir Makmal Saringan Talasemia

(Peringkat Perkhidmatan Kesihatan Primer)

Ada

Rajah 2

9.2 Carta alir Penyaringan Cascade

(Peringkat Perkhidmatan Kesihatan Primer dan Sekunder)

Rajah 3

Carta Alir Penyiasatan Anemia Dikalangan Ibu Hamil

Jadual 1: Interpretasi Kombinasi Lazim Keputusan Makmal & Kaunseling PasanganBil.keputusanTindakan

(Catatan)

Ibu hamilSuami

1.Kekurangan FerumKekurangan FerumRawatan

2.Pembawa (-talasemianormalKaunseling (tiada anak akan mendapat talasemia intermedia)

3.normalPembawa (-talasemia

4.Pembawa (-talasemiaPembawa (-talasemia* Kaunseling segera (kemungkinan mendapat anak talasemia intermedia atau hydrop fetalis)

5.Pembawa (-talasemiaNormal

Kaunseling (tiada anak akan mendapat talasemia intermedia atau talasemia major)

6.normalPembawa (-talasemia

7.Pembawa (-talasemiaPembawa (-talasemia*Kaunseling segera (kemungkinan mendapat anak talasemia major)

8.Pembawa Hb varian (contoh pembawa HbE)

normalKaunseling (tiada anak akan mendapat talasemia intermedia)

9.normalPembawa Hb varian (contoh pembawa HbE)

10.Pembawa Hb varian (contoh pembawa HbE)Pembawa Hb varian (contoh pembawa HbE)Kaunseling (kemungkinan mendapat anak homozygous Hb varian)

11.Pembawa Hb varian (contoh pembawa HbE)

Pembawa (-talasemia*Kaunseling segera (kemungkinan mendapat anak talasemia intermedia)

12Pembawa (-talasemiaPembawa Hb varian (contoh pembawa HbE)

13.Pembawa (-talasemiaPembawa (-talasemia

Kaunseling (tiada anak akan mendapat talasemia intermedia atau talasemia major)

14.Pembawa (-talasemiaPembawa (-talasemia

* berkemungkinan memerlukan diagnosa prenatal

ACKNOWLEDGEMENTS

MEMBERS OF THE NATIONAL TECHNICAL COMMITTEE

FOR NATIONAL THALASSAEMIA SCREENING AND PREVENTION PROGRAM

Advisors:

Dato Dr. Narimah Awin (until December 2006)

Director

Division of Family Health Development

Ministry of Health Malaysia

Dr.E.G. Palaniyappan (until November 2007)

Director


Ministry of Health Malaysia

Working group for Policy Development and Guidelines for National Thalassaemia Screening & Prevention Program (alphabetical order) Dr. Abu Hassan Shaari Abdul Kadir

Senior Principal Assistant Director

State Health Office, Kelantan

Puan Aina Mazwim Mohd. Radzi

Counselor

Penang General Hospital

Dr. Aslinda bt Hj. Ahmad

District Health Officer

Jasin Health Office

Puan Besah Gasar

Health Sister

Batu Pahat District Health Office, Johor

Cik Boon Kim Kiew

Medical Laboratory Technician

Timur Laut Health Office, Penang

Puan Fitamah bt Mahmood

Health Sister

PKD Kuala Terengganu

Dr. Hamimah bt Saad

Family Medicine Specialist

Putrajaya Health Clinic

Encik Abdul Wahab Zakaria

Medical Assistant

Shah Alam Health Clinic

Prof. Dr. A. Rahman A. Jamal

Director & Consultant Pediatrician

UKM Medical Molecular Biology Institute

En. Balan A/L N.S. Menon


Seberang Jaya Health Clinic, Penang

Puan Bibah Bulat

Health Matron

Nursing Unit, Ministry Of Health

Dr. Faridah bt Abu Bakar MCH Officer

State Health Office, Perak

En. Frankie OBrian


PKD Keningau Sabah

Dr. Hishamshah b. Mohd. Ibrahim

Consultant Paeditrician

Pediatrics Institute, Hospital Kuala Lumpur

Dr. Iskandar Firzada b. Osman Family Medicine Specialist

Jaya Gading Health Clinic, Kuantan, Pahang

Dr. Keng Wee Teik

Consultant Pediatrics & Geneticist

Hospital Kuala Lumpur

Dr. Maimunah Bt. Fadzil

O&G Specialist

Hospital Melaka

Dr. Mymoon Bt Alias

Deputy Director


Ministry of Health

Dr. Rachel Koshy

Division of Family Health Development Ministry of Health

Puan Rasilah Ramli

Health Matron Penang

Dr. Rokiah Mohd

MCH Officer

State Health Office Penang

Dr. Rozita Hod


Ministry of Health

Dr. Samihah Mohd Shariff

Medical Officer

School Health Team Penang

Dr. Selva Kumar a/l Sivapunniam

Paedriatrician

Hospital Tg. Ampuan Afzan Kuantan

Sinnappan a/l Anthony

Medical Assistant

Green Town Health Clinic

Puan Jenny Lee Poh Lean

Staff Nurse

Penang General Hospital

Cik Lily Teresa


Tanglin Health Clinic

Dr. Mohd. Daud Che Yusof


State Health Office, Johor

Prof. Madya Dr. Narazah bt. Mohd Yusoff

Universiti Sains Malaysia

Raja Mohamad b. Raja Kadir

Medical Assistant

Pengkalan Chepa Health Clinic

Dr. Redzal b. Abu Hanifah

District Health Office

Kota Belud Sabah

Dr. Roshidah Hassan

Senior Consultant Pathologist

Patology Department, HKL

Dr. Safiah Bahrin


Ministry of Health

Dr. Sanidah Md Ali


Seri Kembangan Health Clinic

Dr. Siti Kamariah Ahmad


Bayan Lepas Health Clinic

Sinnasamy a/l Nallatamby


District Health Office Jasin Melaka

Dr. Soo Peng Yen Consultant Pathologist

Penang Hospital

Prof. Thong Meow Keong

Senior Consultant Peadiatric

Peadiatrics Department UM

Puan Victoria Ponnusamy



Ministry of Health

Dr. Zainuddin Mohd Ali

Disease Control Division

Ministry of Health

Secretariat

Puan Norani Awang

Cik Nor hayati Bt. Mustapa Kamal

Dr. Soo Thian Lian

Peadiatric Consultant & Head of

Department Hospital Likas Sabah

Dr. T.P. Baskaran

Consultant O&G

Hospital Kuala Lumpur

Dr. Zabedah Baharudin


Johor

Prof. Madya Dr. Zarina Abd. Latif

Consultant Pediatrician Pediatrics Department, HUKM

Cik Nur Eliana Mohd Ariff

Puan Tumirah Swandi Ambil 2.5ml darah dalam tabung EDTA

Full Blood Count (FBC)

OPD

27pg

> 27pg

sediakan calitan darah periferi

beri tarikh temu janji kepada klien

Tiada tindakan lanjut

Hantar ke hospital untuk analisa Hb:

1. calitan darah periferi

2. keputusan FBC

3. baki darah dari FBC (tiub EDTA)

4. borang PER PAT 301 (lengkap diisi)

Tiada

Tiada

Disyaki kekurangan ferum

Definitive Diagnosis

Ya

1.Ujian status ferum

2.Rawatan percubaan ferum

Ya

Ada

Teruskan rawatan

Rawatan berkesan?

Ya

Pembawa talasemia atau talasemia intermedia

Teruskan rawatan

Tidak

Kaunseling

Ya

Berikan kad status pembawa kepada pembawa beta-thal dan HbE

Kaunseling

Penyiasatan lanjut jika perlu

Tidak

Tidak

Ambil darah untuk analisa DNA

Keputusan definitif

Kes indeks Talasemia Major

Buat temujanji untuk ujian saringan kepada kumpulan sasar berikut:

Adik beradik + ibubapa kepada kes indeks

Sepupu dan ibubapa saudara kepada kes indeks

Di Peringkat Perkhidmatan Kesihatan Sekunder

Ambil darah untuk ujian berikut:

1. FBC dalam satu tiub

2. Hb analisis EDTA

3. ujian status ferum (sekiranya perlu)

Di Peringkat Perkhidmatan Kesihatan Primer

(sila rujuk carta alir 1)

Hantar ke makmal patologi hospital berkenaan bersama borang PER PAT 301 (diisi lengkap)

Definitive Diagnosis

Tidak

Ya

Ya

Tidak

Pembawa talasemia

Ambil darah untuk analisa DNA

Kekurangan ferum

Beri rawatan

Ya

Keputusan definitif

Tidak

Rawatan berkesan ?

Kaunseling

Tidak

Ya

1.Kaunseling

2.Penyiasatan lanjut jika perlu

Teruskan rawatan

Berikan kad status pembawa kepada pembawa beta-thal dan HbE

Ambil 10 ml darah dari ibu untuk ujian berikut:

FBC 1. status ferum ikut prosedur

2. VDRL sediada

3. ABO Group and RH

Keputusan FBC

MCH

> 27pg

27pg


Ambil darah dari suami untuk FBC

Berikan kad status pembawa kepada pembawa beta-thal atau HbE


Interpretasi kombinasi lazim keputusan makmal & kaunseling pasangan

(sila rujuk jadual 1)

Hantar baki FBC untuk Hb Analysis (bersama sampel (1,2 & 3) ke makmal hospital

> 27pg

27pg

(rujuk carta alir 1)

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Health & Medicine

National Thalassaemia Screening Program , Malaysia