Setting up a Thalassemia Day-Care Centre: Comprehensive Care for Thalassemia Patients

1. How Do I Set Up a Thalassemia Day-Care Centre? Dr. AtulSonker Additional Professor Dept. Of Transfusion Medicine Sanjay Gandhi PGIMS, Lucknow

2. What Does a Thalassemia Major patient NEED??? I am a Thalassemia Patient !!!! THIS feeling is self-killing..alongwith severe distress and financial loss to the family Compassion The cost of supportive care & management: Rs 1,00000- 2,50000 / yr Comprehensive medical Management Anemia + Blood Transfusions Multi-Organ dysfunction Compliance with Medical Management • Factors responsible for poor compliance: • Distance from BTS • Long waiting for IPD • Cost of management

3. Introduction • Thalassemias represent the most common single-gene disorder causing a major public health problem in India. Thalassemia α-Thalassemia β-Thalassemia Thal. Major Thal. Intermedia Thal. Trait (Minor) Silent Carrier Transfusion Dependent Thalassemia(TDT)~150000 patients of Thal. Major In India.

4. Transfusion Dependent Thalassemia (TDT) • Effective management of thalassaemia syndromes by regular transfusion therapy and iron chelation ,has dramatically improved the quality of life. • Today, in the developed world, the life expectancy of patients with thalassemia varies between 25 and 55 years, mainly depending on compliance with medical treatment. • In India , the major obstacles in the management of Thalassemia are: • poor availability of proper medical care, • poor availability of Transfusion Therapy • poor compliance with chelation therapy

5. TDT :Magnitude of Burden in India !! • In the absence of National Registries of patients the epidemiological data is incomplete, and the precise burden of these disorders is unknown. • However, 10,000 to 15,000 babies with β-thalassemia major are born each year. • Around 1,50,000 patients with Thalassemia major. • It has been estimated that 2 million units of packed red cells needed for transfusion of thalassemia patients in the country per year [1,2].

6. Government move towards Management of Thalassemia Syndrome • The Ministry of Health & Family Welfare, Govt. of India has formulated a policy ( Aug 2018) aimed at informing and providing broad guidanceon prevention and management of Thalassemia syndrome. • The policy envisages provision of services for patients with hemoglobinopathies through a hierarchical infrastructure by strengthening existing public health facilities. • The policy recommends creation of a Hemoglobinopathy Unit in: • Government medical colleges • Tertiary care facilities • District level hospitals • Special thrust to develop advanced facilities required for comprehensive care for patients with thalassemia. To carry out therapy through Day Care Facility.

7. Government move towards Management of Thalassemia Syndrome….contd Scope of activities in a Day Care Facility of COE: • To provide safe and quality transfusion support. • Should have resources and personnel to counsel. • Provide and monitor chelation and supportive care • Should actively be involved in research and maintain databaseof patients and carriers in the region covered by it. • Should be active and provide round the year in-house and out-reach training programs. • It should be directly or indirectly involved in conducting and supervising screening programs in the region that it oversees. Creation of State Level “Centers of Excellence” (COE)

8. Establishment of a Day Care Transfusion Facility for TDT

9. Concept of Day-Care-Transfusion Center • Group of patients who require repeated transfusion of blood and blood components at regular intervals: • Thalassemia patients • And other patients suffering from aplastic anemia, hemophilia, leukemia, hematological diseases, or disorders • Time consuming procedural formalities for in-patient admission for getting transfusion therapy- • Daycare transfusion centers play the most vital role of providing blood transfusions and monitoring children suffering from thalassemia major (TDT). • All the TDT registered with daycare centers expect to receive comprehensive treatment in a systemic manner. Poor/ Non-compliance

10. Comprehensive care-program for Thalassemia patients

11. Setting-up a day care transfusion center • To deliver a state of the art medical treatment, therefore, keep up with the latest available technology in our field. • The adoption of standard procedures and protocols will always work very well. • How many patients are going to be catered by this day care facility? • How much is the potential to recruit more patients’ in-future? • It is important to find out the presence of an existing centre of the same hospital. Important points:

12. Resources required to start a day care center Resource Units • To perform Immuno-hematological work-up Laboratory Unit • Specialized nurse, usually acting as liaison between the patient and medical team Para-Clinical Staff Unit Multi-disciplinary Clinical Unit • TM Physician/ Hematologist / Pediatrician: • To supervise the provision of basic care to patient • Support Team: • Cardiologist • Endocrinologist • Hepatologist • Psychologist

13. Space & Other requirements • Day care facility should be placed away from the outdoor sources of noise with effective air-conditioning with attached wash rooms. • Easy access to the casualty or emergency section of the hospital. • Space requirements have been divided into following categories: • Nursing-cum-registration area • Consultation and Examination area • Pre-transfusion Blood sample collection area • Blood transfusion ward area • Blood transfusion ward area: • provided with Easy Chairs, book-shelves and small tables. • Medical equipment requirement: • Suction Apparatus: One suction apparatus for every eight beds • Oxygen cylinders: Two cylinders / 8 beds • Automated Hematological cell counter : For easy and reproducible pre-transfusion screening of patient’s parameters. • Management of Bio-hazard : For disposal of all biohazardous materials such as empty blood bags, soiled dressings ets.

15. Documents for Day Care Center • Referral Form: • From Clinician ( Hematologist / Pediatrician) • Written transfusion policies (Bed side Transfusion Practice): • Including maximum rate • Volume of transfusion • Protocol for transfusion reactions • Other necessary documentation: • For monitoring and follow-up of management to Thalassemia major patients. • Format for communicating : • State Government Authority (COE) • State body of Thalassemia Society (NGO)

16. Summary ?“Sense of Belongingness” • There is a sense of family within the TDT patients and slowly there is development of a close bond with many of these families. • Even some of them prompt to work as volunteer for the day care center. • At the day care facility, it is a easy to connect some of the newer families with veteran families to help guide them as well. • It is very rewarding to be able to educate and help families manage their TDT child’s complex care. • It is rewarding to watch a young adult, whom you have cared for since childhood, “graduate” to the adult world and successfully take ownership of their disease and manage their lives successfully.

17. References • Grow K, Vashist M, Abrol P, Sharma S, Yadav R. b thalassemia in India: current status and challenges ahead. Int J PharmPharmSci 2014;6:28 • Marwaha N. Whole blood and component use in resource poor settings. Biologicals 2010;38:68. • Draft Policy on Hemoglobinopathies, Ministry of Health & Family Welfare (NHM Division-Blood Cell),7th Aug 2018- F No.Z.28015/103/2017-BC (NHM-I)

18. Thank you