Pietrobelli T, Skinner M. PROBE: Brazil data. (2024), POSTER ABSTRACT (PP-165). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016
Introduction
The Brazilian Haemophilia Federation (FBH) carried out a campaign to increase responses to the PROBE (Patient Reported Outcomes, Burdens, and Experiences) questionnaire, which collaborates with the World Haemophilia Federation and was integrated into myWBDR and GTR. To have robust data on the quality of life, treatment and daily life of people with Haemophilia A and B. The data collected is intended to be used in FBH advocacy actions, to improve Public Policies in Brazil.
Methods
PROBE has real-life data from patients, which is why FBH has been a partner in the study since 2018 and has a specific response link that allows you to know the state where the person lives and the distance from their home to the HTC. The information collected by PROBE allows FBH to hold meetings with government authorities and propose improvements for the treatment of people with haemophilia in all 27 federative units in Brazil.
Results
PROBE has 679 contributions to the questionnaire in Brazil. With 321 people with Haemophilia A, 49 with Haemophilia B, 35 carriers and 274 people without coagulopathy, this last group is considered a comparative group for quality of life. Considering 405 people with Haemophilia A, B and carriers, 168 have Severe Haemophilia and 45 Moderate. Around 65% undergo treatment at home and 28% go tothe HTC for treatment. 75% perform 2–3 infusions per week and only 2.25% infuse daily. 41.75% do not have chronic pain and 58.25% admit to living with chronic pain, of which 85% have chronic pain in the target joints.
Conclusions
PROBE data shows a good cross-section of people with Haemophilia A, B and carriers. Brazil has free treatment through the Public Health System, which is an example for the world and, even so, there are windows of improvement that should be taken advantage of. With this data, FBH will work to improve Public Policies with government authorities to improve access to treatment and quality of life.
Disclosures
Mark Skinner: Band Therapeutics, Bayer, BioMarin, CSL Behring, Novo Nordisk, Pfizer, Roche/Genentech, Sanofi, Takeda, Vega Therapeutics.
View Poster: PP_165_WFH2024
