Apsara Boadas is a haemophilia researcher based at the National Centre of Haemophilia, Banco Municipal de Sangre DC, Caracas, Venezuela. In 2018 Apsara published (along with a number of respected co-authors) a paper entitled Haemophilia care in Latin America: Assessment and perspectives. The paper was published in the leading journal ‘Haemophilia’. (Haemophilia 2018 Nov;24(6):e395-e401. doi: 10.1111/hae.13607.Epub 2018 Aug 24).
The study concluded that in most countries, there is a central organization for haemophilia care supported by local groups. The existence of a national registry of people with haemophilia (PWH) was verified in eight countries. Centres of integrated care are located in large cities. In the majority of countries, there was no evidence of the participation of multiple actors in the decision-making. The supply of factor concentrates presents constraints, although the study reported supply as adequate in half of the countries. In most countries, home treatment is available under special conditions. In most countries, there are restrictions on the use of prophylaxis. The coordination of specialized and emergency services depends on each centre. Unrestricted treatment of inhibitors is performed in most countries. In all countries, there are human resources training programmes; however, clinical and health services researches are not widely developed.
The information was obtained through a questionnaire designed according to the PHCE and answered by specialists in mid-2016. The countries included were as follows: Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Mexico, Panama, Dominican Republic and Venezuela.
A cornerstone for improvement in the care of Latin American haemophilia patients is to document patient and public involvement and engagement (PPIE) in the disease including the experience of patients receiving haemophilia care in a region where, according to Apsara and co-workers there are constraints in supply of factor concentrates, no involvement of multiple actors in decision making and where clinical and health services are not widely developed, all of which are critical in terms of PPIE.
CHESS LATAM is designed to collect PPIE data via participating physicians. Having PPIE at the core of the BOI methodology leads to improved opportunity for innovative health economic analysis that in turn leads to robust data that can be used in the market access and care planning environments.
The tables below detail sample achieved to date across phase 1 markets: Argentina, Brazil, Columbia, Chile, and the target sample for phase 2 markets: Mexico, Peru, Ecuador, CAC, Uruguay (CRF = clinical record form, data completed by the participating physician, PPIE = data submitted by the participating patient).
For more information on the research programme and subscription opportunities to participate including benefiting from and contributing to the analytical output – please contact Alison Rose firstname.lastname@example.org – Alison can discuss individual interest in participation and can also arrange a presentation explaining the methodology in depth and sharing examples of analysis published from the original CHESS programmes in Europe and United States.