How does the use of novel therapeutics with enhanced haemostatic protection influence symptoms, decision-making processes, and self-management when treating a bleed in people with haemophilia A? A qualitative study

In the past 50 years, therapeutic interventions for haemophilia A have witnessed significant advancements, with extended half-life factor VIII concentrates, non-factor based haemostatic therapies, and gene therapy, now available. The natural history of ‘well managed’ severe and moderate haemophilia A has changed to such an extent that the current definition of a joint bleed may no longer provide clinical relevance, nor be a symptomology recognised by some people with haemophilia. Given the advances in haemostatic treatments, and their influence on the evolution of the natural history of haemophilia A, there is an imperative to better understand how haemophilia healthcare professionals and people with haemophilia A of all severities decide bleeding is happening and when to instigate treatment. A better understanding of the sensory, cognitive, and emotional experiences, and resultant behaviours associated with bleed identification and treatment will aid haemophilia healthcare professionals to better educate and support people on these treatments for haemophilia.