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International Hemophilia Training Center-Bangkok

Faculty of Medicine, Ramathibodi Hospital, Mahidol University

The World Federation of Hemophilia (WFH) has appointed the Faculty of Medicine, Ramathibodi Hospital, Mahidol University to be an International Hemophilia Training Center (IHTC)-Bangkok since 1984. Prof. Parttraporn Isarangkura was appointed as the Director from 1984 to 1998, followed by Prof. Vichai Aticharttakarn from 1999 to 2003 and Prof. Ampaiwan Chuansumrit from October 2003 up to now. IHTC-Bangkok is nationally and internationally recognized as a leading treatment center for both acquired and hereditary bloody disorders in Thailand. It is an multidisciplinary organization of 10 departments participating in this program. The following is the list of present organizing committee. 
 
Honorary Consultant 
            Prof.Emeritus Parttraporn Isarangkura, M.D., D.Sc.
            Prof. Vichai Aticharttakarn, M.D.
            Assoc.Prof. Sommart Keorochana, M.D.
 
Director:   Prof. Ampaiwan Chuansumrit, M.D.
 
Associate Director:    Assoc.Prof. Pantep Angchaisuksiri, M.D.
 
Member:         Assoc.Prof. Panyu Panburana, M.D.
                       Assoc.Prof. Pimpun Kitpoka, M.D.
                       Assist.Prof. Monratta Panuwannakorn, M.D.
                       Assist.Prof. Rawiwan Roongpraiwan, M.D.
                       Assist.Prof. Manas Soongprasit, M.D.           
                       Assist.Prof. Nongnuch Sirachainan, M.D.
                       Assoc.Prof. Rachanee Suwannuraks, M.Sc.
                       Dr. Chusak Kijkunasathian, M.D.
                       Dr. Monthon Suwannuraks, DDS.
                       Dr. Nantana Sriudomporn, DDS.
                       Miss Atchara Suebsangad, MNS.
                       Mr. Weerapong Puwongsaroch
                       Miss Wathinee Katchamart, MNS.
                       Miss Thitima Kriengkraiudom, B.Sc.
                       Miss Rujinee Chanruka, B.Sc.
                       Miss Somsong Juraitasanee, M.S.(Public Health), M.S.(Psychology Counseling)
                       Mrs. Srisupha Kaewprapan, B.Sc.
                       Mr. Werasak Sasanakul, B.Sc.
 
Objectives
            1.  Provide comprehensive hemophilia care for people with hemophilia from Thailand and other countries and provide consultation though the telephone, letter or email from patients themselves and/or their physicians.
            2. Provide training concerning management of patients with acquired and congenital bleeding disorder to the medical and paramedical professionals in Thailand and other developing countries.
            3.  Provide the accurate carrier detection for females at risk from known hemophilia families and prenatal diagnosis for obligate and proven carriers who are risk to have offspring with severe and moderate hemophilia.
            4.   Continue the research activity concerning acquired and hereditary bleeding disorder both in clinical and advanced molecular aspects.
            5.  Maintain regular communication with WFH and IHTC fellows and participate regularly in WFH activities, meeting and events.
 
Achievement
1. Education for the patients
            1.1  Educational materials in Thai language include book, brochure and CD which are easy to understand have been continuously produced
                     -     Patient and parent guidebook of hemophilia in the aspect of treatment and prevention
                           First edition               printed in Aug 1993
                           Second edition          printed in Aug 1996
                           Third edition              printed in May 2002
                           Fourth edition           printed in Jan 2006
 
                     -     Patient and Parent Guidebook

 

                     -     Brochures related to prevention and control of hemophilia

 
-     Living happily with hemophilia’ was written by Ekawat Suwantaroj, Kesanee Kuhathong, Ampaiwan Chuansumrit who are hemophilia patient, experienced nurse and physician in taking care of hemophilia patients. It consists of pictures and explanation in both Thai and English languages.
 
 

-   Patient record book
              First edition printed in 1993 
              Second edition printed in 2006

 
 
 
-    CD of management of hemophilia emphasizing on home care therapy and proper self care has been produced by Suttipong Srithonsok, Kesanee Kuhathong and Ampaiwan Chuansumrit who are hemophilia patient, experienced nurse and physician in taking care of hemophilia patient.

1.2       ‘Hemophilia Day’ is an educational day for patients with congenital and hereditary bleeding disorder such as hemophilia, von Willebrand disease, other coagulation factor defect and hereditary platelet dysfunction. It is a good opportunity for patient, parents, family member, medical and paramedical professionals from different hospitals to meet and discuss in order to achieve a favorable outcome of nearly normal life of patients. It was first organized at the Faculty of Medicine, Ramathibodi Hospital on April 30, 1995. After that, it was organized every 2 years and then every year as shown in Table 1. It has emphasized on different aspects as shown in Table 1. Finally, the early treatment program using factor concentrate has been accepted by the Director of National Health Security Office (NHSO, Soo Poo Soo Choo) Dr.Sanguan Nittayarumpong during the ‘Hemophilia Day’ on April 24, 2005.

 

Table 1. 'The list of topics discussed during the ‘Hemophilia Day'
            -     30 Apr 1995          Knowledge of hemophilia
            -     26 Apr 1997          Proper care for patients with bleeding disorder
            -     30 Apr 2000          Management of patients with hereditary bleeding disorder
            -     12 May 2002         What is new for hemophilia, hemophilia patient club and 
                                                therapy for better quality of life
            -     20 Apr 2003          Management of hemophilia in the present situation
            -     2 May 2004           Vaccination for patients with bleeding disorder
            -     24 Apr 2005          Quality of life for Thai hemophiliacs
            -     30 Apr 2006          Role of parents and patients with hemophilia in the “30 baht”
                                                national health service
            -     6 May 2007           Factor concentrate for patients under the National Hemophilia
                                                Coverage in Thailand
                                                               
            1.3    ‘Hemophilia Camp’ is a 1-2 day trip for hemophiliac patients with specific objectives. It is an advanced level to teach the parents and patients to cope with the bleeding disorder properly. The following is the list of activities during the ‘Hemophilia Camp’
                     -     21-22 October 2006 Sampran, Nakornpathom province
                                    Self care of hemophilia including self venuepuncture

 

 

-      4 November 2007 Dusit Zoo, Bangkok
                        Visiting the zoo for complicated hemophiliacs 

 

The next ‘Hemophilia Camp’ will be held on October 2008 at Phra Chulachomklao Royal Military Academy located at the foot of Khao Cha Ngok Nakhonnayok Province. It will recruit patients with hemophilia who experience proper self-care and self-infusion of factor concentrate to explore and experience some parts of military exercise under the closed supervision of medical and paramedical professionals.
 
2. Education for medical and paramedical professionals 
            2.1    Hemophilia training course for 4-6 weeks during January and February in each year for medical and paramedical professionals from Thailand and other developing countries. This course has been voted as one of two popular one of two popular training course of the WFH, Ramathibodi Hospital provides low cost accommodation. The cost of living in Bangkok is not very expensive. The public transportation is available in low cost. Thai people are very friendly and helpful. We are admired as the ‘Land of Smile’. Thailand is a peaceful land without any natural disaster such as snow, storm, tornado or earth quakes. Moreover, plenty of fruits and food are available in Thailand with low cost. There are several sightseeing attractive and historic places to visit. The clinical and laboratory services are simple, basic, unsophisticated with low-cost set up which benefits trainees from developing countries with similar limited resources, similar patient problem, and environment. The molecular diagnosis for the hemophilia patients has been set-up. The accurate carrier detection and prenatal diagnosis service are provided. Also, the computerized program written by Microsoft Access has been initially created at Ramathibodi Hospital for collecting patient’s data. It was subsequently used in the national registry of hemophilia in Thailand. The training also includes clinical and laboratory aspects of transfusion service at the hospital blood bank, National Blood Center, Thai Red Cross Society. The trainees have benefited from this aspect.
            The brief training curriculum is as follows
            Clinical activities: Patients with congenital and acquired bleeding disorders are referred to the IHTC-Bangkok at the Faculty of Medicine, Ramathibodi Hospital, Mahidol University An holistic approach to treat these patients has been routinely applied. Emergency and acute problem are treated properly. The long term management will be additionally planned to suit each patient individually in order to achieve a favorable outcome of nearly normal life. Accurate carrier testing and prenatal diagnosis will be provided for the family members. Laboratory activities: Routine hemostatic tests include assay of clotting factors I to XIII, inhibitors to FVIII & FIX, vWF antigen, ristocetin cofactor, protein C, protein S, antithrombin and platelet aggregation. Manual techniques and automated instruments are used. The in-house reagents and normal pooled plasma are prepared for routine service at low cost. An accurate bedside diagnostic kit for determining hemophilia A and B has been invented and distributed to the whole country. A molecular biology lab for carrier detection and prenatal diagnosis is part of the service.
            Research activity: Molecular genetics in hemophilia, sex selection, long term follow-up of hemophiliacs with cost-effective management.
            Multidisciplinary activities: The holistic approach requires the multidisciplinary experts from hematology, blood bank, orthopedics, rehabilitation, nursing, dentistry and social welfare. The followings are the ongoing activities.
                     -     Corrective surgery for hemophiliacs with chronic hemarthrosis, emergency surgery and complicated cases such as inhibitor, dental problem
                     -     Home care treatment for early bleeding episodes
                     -     Parental and patients’ education for self-care, venuepuncture and infusion of factor concentrate
                     -     Hemophilia camping
                     -     Hemophilia and other congenital bleeding education day
            After completing the training, the trainees always continue to collaborate with our center for reagents, lab techniques, organizing workshop and advice on developing hemophilia care and blood transfusion service in their hometown.
            The application of training is through the WFH. The following is the list of trainees from Thailand and other developing countries.
                     -     Dr.Rajan Singh, Director National Blood Center from Nepal during January-February 1986 (8 weeks).
                     -     Mr.GK Thepa from Nepal during 17 January-14 March, 1989 (8 weeks).
                     -     Assoc.Prof.Dacha Romcai from Department of Occupational Therapy, Faculty of Associated Medical Sciences, Chiang Mai University during 16-27 December 1991 (2 weeks).
                     -     Dr.Iswari & Mrs.Mariani from Indonesia during 3 May-11 June 1993 (6 weeks).
                     -     Dr.Joan Padre from the Philippines during 2 February-21 March 1997 (8 weeks).
                     -     Dr.Agi Harliani Soehardjo from Indonesia during 28 February-7 April 2000 (5 weeks).
                     -     Dr.Nguyen Thi Hong Nga, Dr.Tan Quoc Dung and Mr.Ban Minh from Vietnam during 25 February-5 April 2002 (6 weeks).
                     -     Dr.Kongkhum Sisouk, Mrs.Pathila Inthephavong, Dr.Panivone Saykosy from Lao, Ms.Naw Ivy Lwin, Ms.Tint Tint Oo, Dr.htun Lwin Nyein for Myanmar and Dr.Max Frans Jozef Mantic from Indonesia during 18 February-28 March 2003 (6 weeks).
                     -     Dr.Khaliun Neechin from Mongolia, Dr.Fatmah Khalfan Abdallah from Kenya and Dr.Malai Wongchanchailert from Prince of Songkla University, Songkla, Thailand during 17 January-25 February 2005 (6 weeks).
                    -     Dr.Chean Sophâl from Cambodia and Mrs.Bidhaya Rimal from Nepal during 14 January-29 February 2008 (7 weeks).  

2.2       Short course training for 2 days concerning ‘Management of patients with bleeding disorders’ including lectures and 5 workshops of dentistry, blood bank, rehabilitation, nurse and laboratory investigation have been periodically organized since 2000. It was organized at the University Hospitals, Regional Hospitals and Bangkok as follow:
                     -     7-8 October 2000 Ubon Ratchathani Regional Hospital
                     -     21-22 June 2001 Pissanulok Regional Hospital
                     -     2-3 August 2001 Chonburi Regional Hospital
                     -     10-12 February 2003 Nakornnayok Province
                     -     23-24 March 2004 Bangkok
                     -     28-29 July 2005 Chiengmai University
                     -     28 February-1 March 2006 Bangkok
                     -     26-27 April 2007 KhonKaen University
                     -     17-18 January 2008 Rachaburi Regional Hospital
                     -     22-23 May 2008 Nakornsithammarat Regional Hospital
            There are 200-250 delegates attending each conference. No registration fee is required. Moreover, educational materials of handouts or book are distributed free of charge.
            2.3    Production of textbook
            A text book of Pediatric Hematology was first published in 1978 with 250 pages. The revision in the second edition was published in 1987 with 644 pages followed by third edition with 786 pages published in 1995. It was written by Thai experienced physicians expressing the appropriate clinical practice guideline adjusted to suit Thai patients by using the limited health care resources cost-effectively.    

Also, the other two text books of “Hematology-Bangkok and Thrombotic Disorder” and “Clinical Practice Guideline for the Management of Patients with Bleeding Disorder in Thailand” were published in 2003 and 2006, respectively.

 

 

 

Reported by Prof. Ampaiwan Chuansumrit, M.D.
June 20, 2008

 

3.       Staff of the IHTC-Bangkok participate in several WFH conference or workshop held in all over the world.
4.       Staff of the IHTC have been invited as speakers in the international conference. Also, they also present their research study in either oral or poster presentation.
5.       The routine management for hemophiliacs at IHTC-Bangkok has been analysed for the survival, morbidity and mortality rates. The results reveal that treatment of early bleeding episodes at home or nearby hospital is the most effective management. This study has been used as an evidenced base for preparing the ‘Disease Management Program’ for chronic illness with high cost treatment of National Health Security Office. Starting in May 2006, patients less than 10 years of age receive 90,000 baht/yr while patients over 10 years of age receive 120,000 baht/yr for purchasing factor concentrate for treating early bleeding episode at home or nearby hospitals.
6.       A bedside diagnostic kit for accurately determining the status of hemophilia A and B has been invented in 2002. It won the first prize of ZLB Behring Grant 2004, ‘Simple thing great results’.
7.       A computerized program of hereditary bleeding disorders for installing patients’ medical record, pedigree tracking and carrier detection. It has been written by Microsoft Access and extended to be a national registry of National Health Security Office (NHSO) since 2006. In 2008, a program of nationwide hemophilia carrier registry is created as a extension program.
8.       The staff of IHTC-Bangkok continuously produce original articles related to bleeding disorders submitted to the international journal with peer review.