Abstract

Gianluca Vaccaro, Corsaro Lucio, Lorena Trivellato

Haemophilia is a hereditary, recessive Congenital Haemorrhagic Disease (CJD) that almost exclusively affects males. The management of the disease has undergone profound transformations with the development of replacement therapy, but until a few decades ago, it was unthinkable for people with haemophilia to carry out even common daily activities such as sporting activities, because of the risk of possible bleeding. Physical exercise is on the contrary nowadays strongly encouraged for this type of patient as it provides a number of benefits both on a strictly physical level and also non-physically as a means of socialization, independence and self-esteem. The survey described here is a cross-sectional sociological observational study involving 258 individuals with haemophilia, divided into regionally representative quotas of four age groups. The aim of the study was to find out the prevalence, type and frequency of physical activity practiced by people with haemophilia A and B and to assess the impact of the pandemic on the practice of physical activity and sport. In fact, the pandemic situation has had a strong impact on care pathways especially of chronic patients, and regular performance of sport and physical activities shows to be severely curtailed, with this representing an element of impairment to the quality of life of hemophiliacs. The survey focused on Patient-Reported Outcomes (PRO). The research showed the prevalence of physical and sporting activity among people with haemophilia, noting that more than half of the sample is engaged in moderate or intense activity, and 40% in actual sport. On the other hand, an experience reported in paediatric age groups is markedly reduced in comparison to other age groups. Relevant changes in these activities have been detected during the pandemic period, following which around 27% of those surveyed stopped practicing sport or intense physical activity. This research outlined a very concerning picture, as the situation described severely compromises the achievement of an optimal quality of life for these patients and needs to be monitored during the following years.