Thalassemia major - advantages of separate thalassemia unit with regards to awareness and compliance

ORIGINAL ARTICLE

THALASSEMIA MAJOR - ADVANTAGES OF SEPARATE THALASSEMIA UNIT WITH REGARDS TO AWARENESS AND COMPLIANCE

Sushant S Mane, Kavisha B Chaudhari, Ashok D Rathod, Asad Khan Pathan.

Department of Pediatrics, Grant Medical College, Sir J J Group of Hospitals, Mumbai, India.

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Abstract
Objective: To compare awareness amongst caregivers about thalassemia and the socioeconomic difficulties in routine management of these children in two tertiary care hospitals.

Methods: A cross-sectional study was conducted at two tertiary care government hospitals in Mumbai; one of which has a separate thalassemia unit for the management of thalassemics while the other hospital is treating thalassemic children along with the other routine paediatric cases. A total of 51 patients between 2 to 12 years were enrolled; 25 of which were from the hospital having thalassemia unit and 26 from hospital without a separate unit. Their caregivers were compared for the level of awareness and difficulties in their routine management using a pre-designed questionnaire.

Results: All caregivers were aware about the basic concept of thalassemia; however only 15.4% from hospital without a thalassemia unit were aware about the major complications of the disease like short stature, skeletal abnormalities, cardiac and endocrine problems as compared to 36% from thalassemia unit. Only 37.9% from non-thalassemia unit had sent their immediate relatives for screening as opposed to 62.1% from thalassemia unit, 81.5% caregivers from non-thalassemic unit were irregular in giving iron chelation therapy as compared to only 18.6% from thalassemic unit. The average expense on each visit from a thalassemia unit was Rs.328 as compared to Rs.627 from non-thalassemia unit and 68.4% caregivers lost their daily wages from non-thalassemia unit hospital as compared to 31.6% from those in thalassemia unit.

Conclusion: Overall awareness and compliance to treatment of thalassemia is definitely better amongst caregivers in a separate thalassemia unit. Thus, there is a need for more of such units where comprehensive management, economic support and educational awareness for caregivers and patients with thalassemia is provided.

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