PB0529 - Out-of-pocket expenditure incurred during treatment of Hemophilia at a government facility in North India

Monday, June 24, 2024

13:45 – 14:45 ICT

Room: Exhibition Hall

Co-Author(s)

VR

VRINDA RAWAT

Nursing Officer
Post Graduate Institute of Child Health, Noida
NOIDA, Uttar Pradesh, India
DP

DINESH PAL

Senior Nursing Officer
Post Graduate Institute of Child Health, Noida
delhi, Delhi, India
MS

Manju Singh

COUNSELOR
POST GRADUATE INSTITUTE OF CHILD HEALTH
Noida, Uttar Pradesh, India
RG

Ritu Gupta

DOCTOR
AIIMS DELHI
NEW DELHI, Delhi, India
NR

Nita Radhakrishnan

Additional Professor
Post Graduate Institute of Child Health, Noida
Noida, Uttar Pradesh, India
AP

Archit Pandharipande

Assistant Professor
Post Graduate Institute of Child Health
Noida, Uttar Pradesh, India
ss

shruti saxena

senior Resident in department of pediatric hematology oncology
Post graduate institute of child heath noida
greater noida, Uttar Pradesh, India
EB

Eby P. Baby

Pediatric hematology oncology Fellow
PGICH NOIDA
Noida, Uttar Pradesh, India

Presenting Author(s)

SS

Savitri Singh

Professor, Department of Pathology
Post Graduate Institute of Child Health
Noida, Uttar Pradesh, India

Background: In India, most patients with hemophilia have access to free investigations, clotting factor concentrates and physiotherapy. Despite this, there are significant financial challenges for families that compromise care

Aims: The study evaluated the out-of-pocket expenditure for families with hemophilia to understand the challenges they face.

Methods: The institute provides factor assays, inhibitor screen, Bethesda assay and clotting factor support to patients free of cost. A nominal cost for bed and investigations if patient needs admission. The out-of-pocket expenditure incurred by families for travel, wage loss and other medicines was calculated. The questionnaire was prepared by using CHESS as a guidance document and was piloted and pretested before finalization. Institutional ethics approval was received.

Results: The center caters to >800 children with hemophilias and inherited bleeding disorders. Of these parents of 250 consecutive patients who attended the outpatient service between 2022-2023 and consented were interviewed. 38% belonged to lower and 36% to upper-lower social strata. 40% families had to travel >100 kms to reach the center for each bleed. 5.6% reported that their ward’s education could not be continued and 46% reported frequent interruption in school due to the disease. 66% reported an impact on education of the sibling as well. 38% parents were daily-wage earners. 61% reported having an expenditure of INR 500/- to reach the center and for each bleed estimated loss of earnings ranged from INR 500-5000/- despite free treatment. 85% reported loss of income to caretaker for each bleed and 87% reported moderate-extreme financial stress. 69% of families reported impact on family economics including food and education. 95% did not have access to insurance.

Conclusion(s): Despite free factor concentrates, there is significant impact on family economics. These need to be factored in while calculating health economics in the setting of hemophilia