Compliance score as a monitoring tool to promote treatment adherence in children with thalassemia major for improved physical growth

BACKGROUND/HYPOTHESIS: Creeping monotony in the treatment provides minimal motivation for children with beta-thalassemia major, leading to noncompliance for adequate blood transfusions and iron chelation therapy. This study was envisaged to formulate a clinical compliance score and correlate the score with their linear growth velocity and weight gain. MATERIALS AND METHODS: A prospective longitudinal study among 30 thalassemia children aged between 1 and 18 years was conducted in the Department of Pediatrics, Tata Main Hospital (TMH), Jamshedpur, from July 2012 to January 2014. Relevant clinical information and investigations were recorded using a predesigned pro forma. Compliance score was calculated using pre-, post-transfusion hemoglobin and serum ferritin levels. The height velocity and weight gain were calculated. The same patients were re-assessed in January 2015. RESULTS AND DISCUSSION: Mean age of children was 10.18 ± 4.98 years. Forty percent were females. Using the scoring table, 33% were in good category of compliance while 4% had poor compliance. The mean height velocity was significantly higher in good compliance category as compared to average or poor score category in 2014 (P = 0.017). Good compliance score children continued to maintain higher height velocity during the 1-year follow-up (P = 0.02). Average weight gain was higher in good compliance category. CONCLUSION: This paper brings out a simple, regularly monitored scoring system to promote growth in thalassemia children through improved compliance to treatment, which incentivized them to maintain or improve their scores for better height velocity and weight gain. No such compliance score has been tabulated for thalassemia patients as of date.