Accessibility measure for haemophilia patients: Study of anti-haemophilic factors availability in the Rhône-Alpes County, France

Introduction Haemophilia is a constitutional haemorrhagic disease, consecutive to a lack of protein of blood coagulation. The anti-haemophilic factors (AHF) used like haemophilia substitutive therapeutic are expensive medications and can only be delivered into hospital pharmacies. The cost of emergency stock can be a difficulty to their retention within the pharmacy. In 2016, 198 patients from Rhone-Alpes county, 144 haemophilia A and 54 haemophilia B, have been treated by AHF in the Centre Regional de Traitement de l’Hemophilie (CRTH), in Lyon. The aim of this study is to measure the accessibility to the AHF emergency doses in less than 30 minutes in Rhone-Alpes region and to have a better knowledge of accessible patients in case of emergency. Methods A questionnaire has been sent to the hospital pharmacies to know the available emergency doses. According to expert consultations, a 30 minutes delay for AHF, factor VIII (FVIII) for haemophila A, and factor IX (FIX) for haemophilia B, emergency treatment has been established. A Geographic Information System (GIS) has been used to model emergency doses accessibility, more precisely the Network Analyst functionality in ESRI ArcMap 10.4.1. The access times have been estimated from the road network speed limitations. Each patient has been geolocated thanks to his residential address. This geolocalisation allows the distinction between patients accessible in less or more than 30 minutes to AHF emergency doses. Results For FVIII, 45.6% of the region is accessible in less than 30 minutes and 30.5% for FIX when the necessary treatment dose is available. If every pharmacy presently disposing of AFH would have the necessary treatment dose, 50.3% of the region would be accessible for FVIII and 52.5% for FIX, a respective augmentation of 4.7% and 22% of medication servicing. Thus, 118 haemophilia A patients (82%) could be accessible for FVIII and 38 haemophilia B patients (70.4%) for FIX, with doses currently available. With the necessary treatment doses available in each pharmacy presently disposing of AFH, the ratio would be of 89.5% haemophila A patients for FVIII and 87% haemophilia B patients for FIX. Conclusion The main lesson is that a more efficient AHF management could be a major lever to improve the patient accessibility in case of emergency, in particularly for major haemophiliac. Accessibility measure is an innovative decision support tool in this case because it allows a territorial reflection of medication management. This study is a preliminary analysis and corroborates the interest to realize the same study in a larger geographic scale to have a better knowledge of haemophiliacs accessibility. At the national scale for example, it would be an efficient tool. In addition, this kind of analysis could be applied to some other pathologies of rare disease.