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.