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Khon Kaen Hospital
Thailand

The Problem

Thalassemia is a major health problem in many Southeast Asian countries. Thailand alone has over 600,000 cases 1*, with only 10 hospitals that can offer effective treatment. Over 16 million Thais are carriers, so the outlook is very worrying.
The bone marrow of Thalassemia patients is ineffective in creating red blood cells. Without treatment, a child will develop a swollen abdomen, liver, and spleen. Body growth may be stunted, and they will suffer from anaemia, energy loss, and tiredness. Some patients die of heart failure. Without treatment, most patients die young.
If young children receive early treatment, 2*,3* they can lead normal lives, but unfortunately the majority do not have access to such care. This leads to many physical, mental and social problems. In many cases, 4*,5* young children suffering from Thalassemia can have abnormal physical appearance and must face social rejection because they look like children with HIV, leading to problems at home, school and in the community. Family members are also placed under stress in caring for their young children and many poor families face financial difficulty commuting to the health care center. 6*
The lack of early access to treatment can mean a lifetime of suffering and expense, not only for the patients themselves but also for their families and the people around them.
At the national level, the healthcare service is faced with lifelong care costs of over $ 300,000 per case. Effective treatment and care at an early age is of vital importance, but most healthcare providers are still unaware of the value and necessity of such early treatment, and even the government budget reflects the lack of importance given to Thalassemia.

Solution and Key Benefits

 What is the initiative about? (the solution)
The primary focus of this initiative, which started in 2007, a new medical service model for Thalassemia patients was to enable a positive change in attitudes towards Thalassemia, from both healthcare providers and patients. To change people’s attitudes, the initiative ’New Life, New Look, New Thalassemia patients.’ emphasized strengthening the knowledge base of the healthcare providers and giving them greater empathy with the patients.
This model is based on the belief that, with an effective treatment program, patients can have a good education (including university), and can live a successful and happy life. Rather than a social burden, they are seen as people who can contribute to society. With an improved attitude towards caring for Thalassemia sufferers, healthcare providers were able to make effective progress in providing early care for their patients.
As for the thalassemia patients and their families, it was vital to give them a greater understanding of their condition and help them to take a positive, pro-active role in treating the problem.
By emphasizing attitude and knowledge, the initiative was able to produce many positive changes in the early treatment of thalassemia patients. Healthcare providers had a greater sense of emotional, humanitarian attachment to the patients. Also, the patients and their families felt more empowered and in control of their situation.
On a wider level, the intervention was able create two powerful networks that could be used to improve the care of Thalassemia patients. The healthcare providers had greater understanding and ability in providing treatment, and the patients were able to create a support network for other sufferers and to spread their attitude and knowledge for the benefit of others.

Actors and Stakeholders

 Who proposed the solution, who implemented it and who were the stakeholders?
Khon Kaen Hospital itself proposed and implemented this initiative by the creation of the multi-disciplinary Thalassemia care team to streamline and promote effective prevention, promotion, treatment and rehabilitation for Thalassemia patients. This patient-centred, holistic approach to humanized health care was implemented by this team and involved relevant personnel from all hospital departments.
Various stakeholders were involved at all levels. Locally, Khon Kaen Hospital, Thalassemia patients and their families were all primary beneficiaries of the initiative. Both the hospital itself and the patients were able to act as role- models to create regional and national networks. At an international level, the initiative of KKH was able to promote greater understanding and awareness of Thalassemia through the CARE (Change Asia, Rescue the Earth) Project, thereby involving international stakeholders.

(a) Strategies

 Describe how and when the initiative was implemented by answering these questions
 a.      What were the strategies used to implement the initiative? In no more than 500 words, provide a summary of the main objectives and strategies of the initiative, how they were established and by whom.
The objective of this initiative was to provide Thalassemia patients with good quality of life, equitable treatment and a greater sense of human dignity. To provide humanized health care and genuine empowerment, using the 3L approach (Love, Lean, Life), the initiative was able to improve hospital management skills, reduce the number of stages in diagnosis and treatment, and provide greater access to care for Thalassemia sufferers. This was achieved in part by creating a multi-disciplinary. Thalassemia care team, empowering patients to cope more effectively with their illness, and increasing the knowledge and capacity of family members in caring for their children. The parents themselves were then able to act as role models and campaigners to improve community awareness of Thalassemia and empower more sufferers to gain access to treatment.
The 3L strategies of ‘Love, Lean and Life’ were vital to the success of the initiative. ‘Love’ enabled hospital workers, patients and family members to work together more effectively on a basis of mutual care, concern and affection. The hospital workers gained greater emotional attachment and understanding towards their patients while the patients themselves and their family members came closer together through a shared understanding of their problems in dealing with Thalassemia treatment. Young patients were able to become role-models to make positive changes to attitudes and knowledge in their communities. Youth camps involving young people suffering from other conditions such as autism, HIV, or disability, enabled them to come to terms with and accept their illness more easily. These camps also helped them to play a greater role in improving access to equitable health care in their communities.
The strategy of ‘Lean’ was implemented to streamline and improve the efficiency and effectiveness of health care for Thalassemia patients. The initiative used a holistic approach by creating a multi-disciplinary team composed of representatives from every hospital department involved in Thalassemia prevention, diagnosis, and treatment. The ‘Thalassemia care team’ then became a role model for other medium and small hospitals to replicate, thereby improving the provision of health care for thalassemia patients in their areas. This streamlined care team was eventually able to improve its technical capacity to provide a highly efficient one-stop-service for the patients. This clearly reduced a fewer stages in receiving initial diagnosis and treatment from 12 to only 2, and reduced the length of treatment from 2 days to only 6 hours.
The third strategy of ‘life’ referred to the improved living conditions of the patients who were empowered by this initiative. Their quality of life improved and in turn they were able to use their new attitudes and knowledge to improve quality of life not only for themselves but also for their families and communities. By becoming role-models they were able to bring new life and hope to other Thalassemia sufferers.

(b) Implementation

 b.      What were the key development and implementation steps and the chronology? No more than 500 words
In 2006, a survey of child health care admissions at Khon Kaen Hospital found that Thalassemia patients were being referred in large numbers from local hospitals. This survey also found that these patients and their families did not receive comprehensive, equitable treatment. They were also looked down on by others in their communities, and thereby as suffering from low self-esteem and lack of human dignity. For these reasons, Khon Kaen hospital decided to improve its systems of care and prevention for Thalassemia patients.
In 2007, Khon Kaen hospital created the Thalassemia care team, aiming to provide a holistic approach to humanized health care. This team was eventually able to provide a highly effective one-stop service, strengthening the whole process of Thalassemia diagnosis and treatment. As such this multi-disciplinary care team model was later replicated by other hospitals to create an integrated so-called Network care Model for Thalassemia treatment. At this time, patients and their families were benefiting from this improved service and were also gaining greater knowledge and awareness in dealing with Thalassemia.
In 2008-2009, some of these patients became involved as role models in promoting awareness of Thalassemia in local communities, as well as empowering themselves and others.
From 2010-2012, further initiatives to strengthen the Thalassemia care team and empower patients and families through the “Thalassemia Association” and various network activities.
From 2008, onwards, various steps were also taken to improve Thalassemia prevention. It was found that the percentage of carriers in the area increased from 30% to around 40%-50%. Lack of knowledge among local members was a major factor, limiting successful prevention of Thalassemia. Medical Specialist in this field were also in very short supply.
As a result, Khon Kaen Hospital’s Thalassemia care team had to take steps to improve their capacity for identifying Thalassemia cases. This was achieved by proactive management of existing resources, and greater technical ability in identifying potential Thalassemia cases, including swift and accurate DNA analysis.

(c) Overcoming Obstacles

 c.      What were the main obstacles encountered? How were they overcome? No more than 500 words
This initiative faced many obstacles before achieving its target of effective prevention, care and rehabilitation of Thalassemia patients.
At the national level, there was no real integrated vision of a comprehensive health care process for treating Thalassemia, This was overcome by creating the Thalassemia care team, to provide a multi-disciplinary approach to Thalassemia prevention and care.
Another major obstacle was the bias of medical training in Thailand towards the treatment of Western conditions and diseases. Thalassemia is only a major disease in certain Southeast Asian countries. There was a major lack of awareness and knowledge of Thalassemia, even among professional medical workers. This was overcome in part by the creation of the Thalassemia care team, which was eventually able to improve knowledge and awareness of Thalassemia among health care personnel at all levels.
Before this initiative, there were only 10 hospitals in Thailand providing treatment for Thalassemia. As a result, most patients were unable to access equitable treatment. The Khon Kaen Hospital Thalassemia Model was created to come to terms with this,thereby leading the development of a network of hospitals of all sizes, to prevent and treat Thalassemia effectively by using guidelines and working practices devised by the Thalassemia care team.
Another obstacle faced by the initiative was that Thalassemia had not been classified as an important disease, according the hospital plans. There was a lack of effective systems and methods of accountability. To overcome these obstacles the Thalassemia Centre was established and the strategies of ‘Love-Lean-Life’ were utilized to improve quality of life for Thalassemia patients and their families.
There was also a lack of technical resources for testing, diagnosis and treatment. Khon Kaen Hospital’s Thalassemia Centre has been collecting actively collecting research data to push for policy change at a national level in order to prioritise funding for effective testing and screening of Thalassemia. To date, certain budgets have been allocated to improve testing procedures and it is hoped that further pressure will lead to more funding to benefit thalassemia patients.

(d) Use of Resources

 d.      What resources were used for the initiative and what were its key benefits? In no more than 500 words, specify what were the financial, technical and human resources’ costs associated with this initiative. Describe how resources were mobilized
Effective use of resources was vital to the success of the initiative and emphasis was placed on human resources as the primary factor in implementation of the project.
The creation of the Thalassemia care team led to an improvement in the use of human resources within the hospital. Patients and their families directly benefitted from this initiative. This improvement in human capacity and resources played a vital part in reaching the objectives of the initiative.
As for financial resources, the initiative relied initially on the existing hospital budget allocation. However, to provide proactive, effective, equitable care, further financial resources were needed. The initiative was funded by the National Health Security Office (NHSO) and by local administrative organizations to help develop more efficient care prevention and treatment as well as improving network.
The key benefits from this initiative were many and varied, affecting stakeholders at all levels. Khon Kaen Hospital itself was a primary beneficiary, through the implementation of the Thalassemia care team. A highly efficient and equitable one-stop service was created for patients. In turn, some of these patients were able to act as volunteers and campaigners to help promote new awareness of Thalassemia in the local community. Programmes such as the ‘Five for One’ blood donation campaign were especially effective in enabling a greater supply of blood for transfusions. This had previously been a major problem in providing effective treatment.
Other hospitals in the region also benefited from the Khon Kaen Model of the Thalassemia care team were able to treat patients in their own hospitals, rather than referring all cases to Khon Kaen Hospital. These smaller hospitals were likewise able to improve the efficiency of their blood donation campaigns, thereby benefiting patients in their area.
Thalassemia patients themselves were direct beneficiaries of this initiative. They were empowered to become role model for others, thereby improving their sense of human dignity and self-esteem. A quality of life study using the WHO-QOL evaluation found that 52.94% of patients, who previously had low quality of life, were able to improve their lifestyle. Likewise, 45.10% of patients who had an average level of quality of life, were able to have better quality of life after the initiative.
The families and local people became closer, understood one another more and felt more confident in facing and dealing with the difficulties involved in caring for Thalassemia patients.The latter became role models in the community.
On a wider level, society as a whole benefited from a greater awareness about the causes and treatment of Thalassemia. People were able to participate more effectively through such activities as blood donation campaigns. Government and NGO organizations were also more motivated to provide funding for projects involving Thalassemia.
The country of Thailand itself also benefited by the development and empowerment of human resources, and by the creation of effective guidelines for the promotion, prevention, treatment and rehabilitation of thalassemia patients. In the long run, the country will benefit from the human and economic value of successfully treating young patients.

Sustainability and Transferability

  Is the initiative sustainable and transferable?
Thalassemia is a condition that requires lifelong, costly treatment. Regular transfusions and injections (chelation) are needed and it is vital that both treatment and prevention are carried out effectively.
To achieve sustainable and transferable models of Thalassemia treatment and prevention, the initiative placed great importance on patient-centred, humanized health care. Empowering Thalassemia sufferers and their families with the awareness and knowledge to cope with their condition was the most sustainable method of providing effective Thalassemia treatment. These patients then became role models to transfer their new awareness and knowledge to other families and communities.
Similarly, the Thalassemia care team was also a prime example of how the initiative created a sustainable and transferable model for other hospitals to replicate. The Khon Kaen Hospital Thalassemia Centre was likewise a sustainable and transferable model that could be implemented at the local, regional, national and international levels to provide equitable, integrated, holistic care and treatment for Thalassemia patients.
The creation of these best practice systems was at the heart of this initiative and these models represent the clearest example of how to provide sustainable and transferable care prevention and rehabilitation for Thalassemia patients and their families.

Lessons Learned

 What are the impact of your initiative and the lessons learned?
Many valuable lessons have been learnt throughout this initiative and the key elements for successful implementation were identified.
Of primary importance was the patient-centred care approach to providing effective treatment for Thalassemia sufferers. Empowering patients and their families through genuine participation led to the creation of effective role models to improve all aspects of Thalassemia care. Providing such ‘inner drive’ for the patients meant that the initiative was truly ‘of the patients, for the patients, and by the patients’. Communication between health care providers and patients became much more effective through mutual understanding, compassion and recognition of the difficulties faced by both parties. The sustainable and transferable nature of these patient role models also represented a valuable lesson in providing equitable treatment for thalassemia sufferers.
The initiative also provided many key lessons for health care providers. Humanized health care, through a multi-disciplinary team-based approach, was a vital element in the success of the initiative. The hospital was able to streamline its system, maximize the use of existing resources, and meet social needs in an accountable, responsible, transparent manner. This one-step service approach then became a sustainable and transferable methodology for providing greater prevention, treatment and rehabilitation for Thalassemia patients.
While there is still a long way to go in developing Thailand ’s core systems to prevent and control the spread of Thalassemia, the initiative has undoubtedly enabled health care policy makers to identify clearly the most sustainable and transferable elements in providing effective, equitable, high-quality care for Thalassemia patients and their families.

REFERENCES
1.Panich V, Pornpatkul M, Sriroongrueng W. The Problem of thalassemia in Thailand. Southeast Asian J Trop Med Public Health 1992; 23: 1-6
2.Monthana J , Piroj W, Wiriwan W, Rampin P. Treatment outcomes of Thalassemic Children using Regular Transfusion and Iron Chelation. J Khon Kaen Medical 2009; 33 (2):52-58.
3.Cappellini, N, Cohen, A, Eleftherion, A, Piga, A, & Porter, J. (Eds.). Guidelines for the clinical management of thalassemia.Nicosia, Cyprus: Thalassemia International Federation 2000
4.Anie, K.A., & Massaglia, P. Psychological therapies for thalassaemia.Cochrane Database System Review 2001; 3, CD002890.
5.Aydin, B,Yaprak, I, Akarsu, D, Okten, N, & Ulgen, M. Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatrica Japonica 1997, 39 (3): 354–357.
6.Suksiri P, Arunee J, Thawalwong R, Amornrat R. Lived Experiences of Mothers Caring for Children With Thalassemia Major in Thailand. JSPN 2007; 12 (1):13-23.

Contact Information

Institution Name:   Khon Kaen Hospital
Institution Type:   Government Agency  
Contact Person:   Dr. Monthana Juntharaniyom
Title:   doctor  
Telephone/ Fax:   +(66)43 336 789
Institution's / Project's Website:   +(66)86 312 3687
E-mail:   thalassemia.un@gmail.com  
Address:   54 Sri Chant Road, Nai Mueang
Postal Code:   40000
City:  
State/Province:   Khon Kaen
Country:   Thailand

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