OBJECTIVES: Assess adherence to the treatment protocol for Phenylketonuria through the TPValue platform, overseeing the adoption of standards outlined by the Clinical Protocols and Therapeutic Guidelines (PCDTs) using the TDABC method.

METHODS: Using an approach that combines TDABC, an activity-based costing technique, with TPValue, a management support platform, we mapped the care journey as stipulated by the PCDT and the value journey (JAV-RARAS) for Phenylketonuria, quantifying the time and resources associated with each stage of treatment. By utilizing TPValue, we organize the collected data in a structured manner, thus simplifying the analysis of processes.

RESULTS: The results indicate that diagnostic, treatment, and resource activities often do not align with what is proposed by the protocol. TDABC indicates an allocation of 98.9% to medicines and 1.1% to non-medicines, while the PCDT assigns 100% to medicines. The percentage allocation of resources throughout the patient journey also exhibits significant variations. In the PCDT, 95.8% of resources are allocated to treatment, 0.66% to diagnosis, and 3.2% to follow-up. According to TDABC, the allocation is 1.94%, 93.1%, and 4.74%, respectively. The origin of the resources differs, with the PCDT indicating that 97.7% of the resources come from the patient himself, 1.08% from the Center, and 1.14% from the SUS, while TDABC shows 95.9%, 3.05%, and 1.02%, respectively.

CONCLUSIONS: The application of TDABC via TPValue provides a real perspective on the daily practice in treating Phenylketonuria compared to the PCDT. This approach can reshape PCDTs, enabling more precise and efficient management of resources and the journey of rare diseases.