Improving the value of healthcare delivered requires accurate cost information, which can be challenging for rare diseases. We report direct costs of patients with OI using the TDABC methodology.

This research is part of a nationwide observational study to assess the “Value of Healthcare Journey for Patients With Rare Diseases” in SUS. Patient journey and economic data was collected for the actual clinical practice in each medical center enrolled in the project. We set the starting point of disease and map a patient’s path in the healthcare journey, including treatment, exams, procedures and appointments needed. Unit cost, time and amount of resources to perform each activity, such as human resources, materials and medicines, was assessed, disregarding indirect costs. Here we present preliminary results for OI. We considered medical centers from different regions of Brazil. The results are presented in terms of percentage and/or mean and its standard deviation (SD).

Three medical centers completed the data collection. The average [SD] cost of a one year journey of a patient diagnosed with OI is BRL 16,308.07 [11,005.21] (USD 2,886.91 [1,948.36]) per center. Activities with greater cost are medicines, with an average cost of BRL 11,919.47 [12,629.45] (USD 2,109.76 [2,235.52]), followed by materials and human resources, with an average cost of BRL 2,881.91 [3,311.57] (USD 509.92 [585.84]) and BRL 1,506.70 [1,300.46] (USD 266.54 [230.24]), respectively. When assessing the moment of a patient’s journey, the percentage of appointments, diagnosis, treatments and follow-up were 11.2, 25.8, 32.5 and 30.5, respectively. Only 3.3 percent of consumed resources were external to the center (out-of-pocket or private insurance).

The TDABC can efficiently draw the processes and costs associated with it. Medicines are the main driver of annual costs for OI patients in the SUS. This study was funded by the National Council for Scientific and Technological Development – CNPq and the Ministry of Health of Brazil – MoH.