Impact of Dedicated Thalassemia Day Care Services: Pediatric Hematologist's Perspective.

Background: Thalassemia is a chronic condition which has psychosocial impact on children and their caregivers. To ensure appropriate medical management and social support, it is important that these children are enrolled in a proper day care centre led by a haematologist or trained paediatrician. This study assesses the impact of dedicated thalassemia day care services in lives of patients with thalassemia. Material and Methods: Retrospective analysis of qualitative and quantitative data of children in Thalassemia Day care centre (established in March 2020) of a Pediatric hospital in Mumbai, India was done. A team comprising of hematologist, counselor, staff nurses, social worker, porters and blood bank technician was appointed. A total of 88 children with Thalassemia who were initially taking treatment in general wards were enrolled. Transfusion guidelines to maintain pre-transfusion hemoglobin between 9 and 10.5 g/dl were prepared. Better hematocrit of blood, fresh blood and leucodepletion filters were provided to all. Iron overload status was checked by serum ferritin and T2* MRI periodically and chelation optimized. Steps to strengthen primary and secondary prevention of thalassemia were taken. NGOs were engaged to assist patients socially and financially. Results: Thalassemia day care centre (TDC) started in March 2020 with 88 registrations and as of March 2023, we are supporting 157 patients. Baseline pre-transfusion Hb was available for only 64/88 (72%) and ferritin levels in 62/88 (70%) patients prior to TDC as rest were not following up with hematologist. Amongst 66 patients, pre transfusion hemoglobin improved from mean of 8.2 g/dl (6.5-10.6 g/dl) (pre TDC) to 9.5 g/dl (8-10.6 g/dl) (post TDC). No patient has acquired a blood transmitted viral infection in these 3 years. Mean serum ferritin levels were 3285 ng/ml amongst 63 patients pre TDC and 3870 ng/ml amongst 88 patients post 3 years of TDC. HLA typing camps helped us in identifying 14 sibling matches, out of which 9 underwent successful Bone marrow transplant. As primary prevention strategy, 201 anemic pregnant females were screened and 8 carrier mothers were identified. For secondary prevention, 15 couples underwent antenatal screening to prevent birth of a child with thalassemia. Team also ensured psychosocial well-being of families, which is reflected in the positive feedback given by patients post 3 years of day care. Seven CMEs or awareness programs have been conducted by the team to spread awareness. Conclusion: With a dedicated centre, we are now able to provide appropriate healthcare to patients which has helped in improving their hemoglobin as well as iron overload status. Children and families now have a more friendly and comfortable environment for taking transfusions.