JAV-RARAS: Evaluation of Adherence to Clinical Protocol and Therapeutic Guidelines (PCDT) for Mucopolysaccharidosis Type 2 (MPS2) at Codajás Polyclinic - An Analysis of the Value-Based Care Journey
Author(s)
Camila C. Azevedo, MBA1, Marcelo E. Nita, MSc, PhD, MD1, Vania Mesquita Gadelha Prazeres, MSc, MD2, Luana Lopes, MSc1, Sabrina Santos, MD2, Dhallya Cruz, MD2, Myrianne Barbosa, MSc1, Thiago Godoy, MSc1, Temis Felix, MSc, PhD, MD3, Claudia Lorea, MSc, MD3, RARAS Study Group, MD3;
1MAPE Solutions, São Paulo, Brazil, 2Polyclinic Codajas, Manaus, AM, Brazil, 3Porto Alegre Clinical Hospital, Porto Alegre, Brazil
1MAPE Solutions, São Paulo, Brazil, 2Polyclinic Codajas, Manaus, AM, Brazil, 3Porto Alegre Clinical Hospital, Porto Alegre, Brazil
OBJECTIVES: The Clinical Protocol and Therapeutic Guidelines (PCDT) establish criteria for the diagnosis and treatment of specific diseases. This study aimed to map the care journeys of patients with Mucopolysaccharidosis Type 2 (MPS2) at the Codajás Polyclinic in Amazonas and compare them with the PCDT from the Ministry of Health. The comparison seeks to evaluate adherence to the protocol, identify discrepancies, and suggest improvements in care.
METHODS: The study "Value-Based Care Journey for Patients with Rare Diseases (JAV-RARAS)" is a national investigation that uses the Time-Driven Activity-Based Costing (TDABC) methodology to evaluate processes and costs associated with the management of 21 rare diseases. The research identified the actual annual costs of managing patients with MPS2 through interviews with healthcare professionals and analyses of administrative and care processes. The cost stipulated by the PCDT was calculated based on its definitions, allowing for a direct comparison.
RESULTS: The results showed that the care journey at the Polyclinic did not adhere to PCDT. The average annual cost recorded was $166,387.49, while the cost predicted by the PCDT was $68,918.73. The difference between the proposed treatment costs and those actually practiced was significant, with the average cost estimated by PCDT at $68,641.80, in contrast to $165,497.09 from the Polyclinic.
CONCLUSIONS: The preliminary analysis indicates that the current clinical practice is more costly than stipulated by PCDT. This discrepancy suggests that the needs of patients with MPS2 may not be adequately met. Thus, it highlights the importance of updating clinical protocols, monitoring adherence in real-time, and adapting them to patient demands to ensure quality medical care
METHODS: The study "Value-Based Care Journey for Patients with Rare Diseases (JAV-RARAS)" is a national investigation that uses the Time-Driven Activity-Based Costing (TDABC) methodology to evaluate processes and costs associated with the management of 21 rare diseases. The research identified the actual annual costs of managing patients with MPS2 through interviews with healthcare professionals and analyses of administrative and care processes. The cost stipulated by the PCDT was calculated based on its definitions, allowing for a direct comparison.
RESULTS: The results showed that the care journey at the Polyclinic did not adhere to PCDT. The average annual cost recorded was $166,387.49, while the cost predicted by the PCDT was $68,918.73. The difference between the proposed treatment costs and those actually practiced was significant, with the average cost estimated by PCDT at $68,641.80, in contrast to $165,497.09 from the Polyclinic.
CONCLUSIONS: The preliminary analysis indicates that the current clinical practice is more costly than stipulated by PCDT. This discrepancy suggests that the needs of patients with MPS2 may not be adequately met. Thus, it highlights the importance of updating clinical protocols, monitoring adherence in real-time, and adapting them to patient demands to ensure quality medical care
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR186
Topic
Patient-Centered Research
Topic Subcategory
Adherence, Persistence, & Compliance
Disease
SDC: Rare & Orphan Diseases