A Scoring System for the Assessment of Quality of Care in the Management of Transfusion Dependent Thalassemia

Objective: To identify criteria which can be used locally to assess the quality of care for thalassaemia patients, leading to quality improvement measures. In low-resource settings, there is often minimal support for services, and the investigations used in patient monitoring are very basic. In order to select standards which can serve quality assessment, consideration is given to what is available in most centres. Importance is given to the need for the local service provider to self-assess the quality of care according to evidence-based minimal standards. Methods: A search in the recent literature was performed to identify measures of quality care in thalassaemia, selecting those which can be used in resource-poor settings. They are then compared to the standards listed in internationally accepted guidelines. Results: Twelve criteria were selected based on the routine information recorded by most centres. These include the following: clinical criteria: mean age (excluding paediatric clinics), pre-transfusion Hb < 9 g/dL, serum ferritin, MRI availability, heart iron (where available) >20 ms, LIC (where available) <3 mg/kg dw, LIC > 15 mg/kg dw, combination chelation within the last year, and BMI < 18.5 kg/m2. Social criteria (for adults): completed tertiary education, married/cohabiting, and employed full or part-time. Each is assigned a score with a total range from 0 to 10. Conclusions: Annual scoring according to achievements allows service providers to compare with previous years and conclude which of the basic services need to be further upgraded to achieve quality improvement. Scoring also allows for comparison with standards published in international guidelines. The clear aim is to aim for higher scores each year, indicating better patient outcomes.