The Benzathine Penicillin G (BPG) reformulation preferences study – the importance of cultural awareness and appropriate governance concerning Rheumatic Fever related research in New Zealand

Abstract

Abstract Acute Rheumatic Fever (ARF) is the autoimmune condition caused by untreated group A streptococcal (GAS) infection of the throat and possibly skin. Repeated or severe untreated attacks of ARF can cause permanent heart damage known as rheumatic heart disease (RHD). ARF/RHD rates in the Pacific (Samoa, Tonga and Fiji) have been reported as being 5 times higher than that found in NZ. Pacific Peoples living in NZ currently comprise ~ 7% of the NZ population so prioritization of ARF/RHD prevention, treatment and management efforts within the Pacific region and NZ is warranted due to high incidence rates and migration between countries. As a GAS vaccine is not yet available, the most effective recommended preventative measure for ARF requires painful monthly injections of Benzathine Penicillin G (BPG) be given intramuscularly for 10 years. Known as secondary prophylaxis, the purpose is to prevent GAS infections that can lead to ARF and cause RHD. A reformulated BPG is desperately needed. To support the generation of a more appropriate BPG reformulation that encourages treatment adherence, this work explored the BPG reformulation preferences of predominantly Māori and Pacific children/teens in New Zealand currently receiving monthly BPG intramuscular injections, their families and healthcare providers. The appropriate governance, cultural leadership and guidance essential for this project work to progress safely by the research team was provided by Pasifika and Māori health researchers, leaders, representatives, scientists and academics with careful considerations integrated into the development of the software applications and into the research work.