TITLE: Health seeking behaviour, healthcare utilisation and

healthcare expenditure in children with thalassemia symp-

toms in Salem district, Tamil Nadu

INTRODUCTION: Hemoglobinopathies are an important national health burden in

India. Among other hemoglobinopathies, beta thalassemia is an important health
problem that receives little attention because of other competing priorities, such as
tackling the massive burden of protein energy malnutrition and communicable dis-
eases. In India, about 45 million thalassemia carriers and 15,000 children are born
with full-blown thalassemia each year[1]
Tamil Nadu, a state in south India, has a particularly high burden of thalassemia, with
a prevalence of 4% [2,3]. Thalassemia is a genetic, autosomal recessively transmit-
ted disease. The synthesis of hemoglobin is deficient and hence, children affected by
this disease have a severe form of anemia. Children affected by beta thalassemia ma-
jor need long-term and sustained life-saving treatment, in the form of regular blood
transfusion and iron chelation treatment.
NHM TN along with line departments has implemented screening of
Hemoglobinopathies (Sickle Cell Anaemia & Thalassemia) in adolescent children
studying in 10th, 12th standard and unmarried school dropouts above the age of 14 in
30 selected tribal blocks in 13 Districts since November 2017. The programme imple-
mented at a cost of Rs 216.00 lakhs in Dharmapuri, Salem, Krishnagiri, Namakkal,
Nilgiris, Coimbatore, Tiruvannamalai, Villupuram, Vellore, Thiruchirapalli,
Dindigul, Erode and Kanyakumari Districts in phased manner. The programme in-
volves primary screening with NESTROFT & SOLUBILITY TESTs are done with
the support of (TMORS) Tribal Mobile Outreach Services and final confirmatory di-
agnosis at 5 Government Medical College Hospitals with HPLC which is a highly
specific and sensitive equipment. The children are provided with genetic counseling
at District Early Intervention centers.
Establishment of Comprehensive Integrated Centre for Treatment of Hemophilia &
Hemoglobinopathies in 5 Government Medical College Hospitals namely:-
1. Institute of Child Health& Hospital for Children , Government Madras Medi-
cal College Hospital, Egmore, Chennai 8(Nodal Centre)
2. Government Dharmapuri Medical College Hospital, Dharmapuri
3. Government Rajaji Madurai Medical College Hospital, Madurai
4. Government Theni Medical College Hospital, Theni
5. Government Mohan Kumaramangalam Salem Medical College Hospital,
Salem
These facilities will be a 6 to 10 bedded day care centre to ensure adequate manage-
ment and to serve as a baseline of minimum monitoring that is needed for care of
these children & to prevent frequent school absenteeism among these children.
Since the mainstay treatment for Thalassemia is blood transfusion there is an addi-
tional risk of developing conditions due to chronic blood exposure such as transfu-
sion reactions,iron over load affecting various organs.
This study aims to inquisite the awareness among the population, health seeking be-
haviour and to look at the penetration of the schemes provided by the government
aimed at aiding children with hemoglobinopathies along with their associated health
expenditures. We notice that a large section of the people with thalassemia come
from low income and tribal communities usually living in remote hilly regions. The
study will also look at ways to bring health care facilities closer to the affected and
the communities which need them the most.

OBJECTIVES
• To evaluate the health seeking behaviour ,Healthcare utilisation and Healthcare ex-
penditure among children with thalassemia.
• To inquisite the Healthcare expenditure in children with thalassemia in
Salem ,Tamil Nadu.

METHODOLOGY:
Study setting: Salem district, Tamil Nadu
Study Population- children with thalassemia symptoms
Study tool: A Pretested semi structured questionnaire .
Study technique: Face to Face interview.

STUDY INSTRUMENTS:
SOCIODEMOGRAPHIC DETAILS It includes basic details regarding the subjects
MORBIDITY PATTERN
It includes questions like

• History of thalassic symptoms.

• Symptoms like breathlessness, fainting, bone deformity, growth retardation,
urine and skin colour change
 • Frequency of Hospital visits.

HEALTHCARE UTILIZATION
It includes questions like
• Medical policies or Medical Reimbursement taken.
• Amount of Money covered by the medical policies.
• Affordability and accessibility of the packed red blood cells.
• Satisfaction with the Healthcare system.

[1] Balgir RS. The burden of haemoglobinopathies in India and the challenges ahead.
Curr Sci. 2000;79(11):1536–47.
[2]Grow K, Vashist M, Abrol P, Sharma S, Yadav R. Beta thalassemia in India: cur-
rent status and the challenges ahead. Int J Pharm Pharm Sci. 2014;6(4):28–33.
[3]Suresh Babu TV, Shantaram M. An incidence of β-thalassemia in South
India–a review. Int J Res Pharm Biosci. 2016;3(5):1–6.
[4]Guidelines for the Standard Monitoring of Patients with Thalassemia: Report of
the Thalassemia Longitudinal Cohort
Venée N. Tubman, MD, MMSc,1 Ellen B. Fung, PhD, RD,2 Maria Vogiatzi, MD,3
Alexis A Thompson, MD, MPH,4 Zora R. Rogers, MD,5 Ellis J. Neufeld, MD PhD,1
Janet L. Kwiatkowski, MD, MSCE,6 and the Thalassemia Clinical Research Network