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Haemophilia treatment has seen great advances in recent years with an accompanied reduced risk of physical activity (PA) related bleeds. Based on its known health benefits, people with haemophilia (PWH) are currently encouraged to regularly engage in PA. However, this may not always translate to increased levels of PA. In this narrative review we aim to provide a brief overview of what is currently understood regarding PA levels and influences for the three broad age groups of children and adolescents, adults and older adults. We also provide recommendations for members of the haemophilia team on important aspects related to promotion of PA in their clinical practice. We highlight that PA behaviour is multifactorial and that many PWH still have limited access to adequate care. Whilst some still face unique challenges to being more physically active, overall, the barriers and facilitators to activity are very similar to that of the general population. [ABSTRACT FROM AUTHOR]

Introduction: Although sports participation is advocated in people with haemophilia (PWH), detailed data concerning sports participation in Dutch PWH is lacking. Aim: to assess sports participation in Dutch PWH (6‐65 years) compared to the Dutch general population (GP). Methods: Data from a nationwide, cross‐sectional study in PWH were analysed. Sports participation (type, duration, frequency) was assessed by the Modifiable Activities Questionnaire (MAQ), limitations in activities using the (Paediatric) Haemophilia Activities List ((Ped)HAL). Sports in the two highest categories according to the National Hemophilia Foundation classification were considered high‐risk sports. Groups were compared using Chi‐square testing. Results: A total of 524 Adult PWH (median age: 45 (IQR: 30–55); 37% severe) and 126 paediatric PWH (median age: 11 (IQR: 8–14); 52% severe) were included. Sports participation was higher in adults (70%) than the GP (58%) and similar to the GP in children (PWH: 68%, GP: 72%). High‐risk sports participation decreased with age in PWH: from 65% (6‐12 years) to 17% (50‐65 years), which was also observed in the GP. Sports participation in children was independent of severity (non‐severe: 67% vs. severe: 65%; P = 0.97), but not in adults (non‐severe: 75%, severe: 62%; P < 0.01). Non‐severe PWH played more high‐risk sports than severe PWH: children at 65% vs. 48% (P = 0.05), adults at 25% vs. 15% (P = 0.07). Discussion: These results suggest that sports participation in PWH was comparable to the GP. Sports participation was dependent of haemophilia severity in adults. Children were more involved in high‐risk sports than adults. More studies on sports‐related injury‐risk are needed for adequate counselling. [ABSTRACT FROM AUTHOR]

In the Dutch haemophilia population, the distribution of patients with severe haemophilia is approximately 50%.1 This could lead to selection bias, as more adherent and more active patients are likely more prone to complete these questionnaires. A total of 267 participants with haemophilia A or haemophilia B who used prophylaxis completed both questionnaires and were included in the analyses. Keywords: adherence; compliance; Haemophilia; physical activity; sport EN adherence compliance Haemophilia physical activity sport e402 e405 4 06/14/21 20210501 NES 210501 Patients with severe haemophilia (PWH) lack clotting factor VIII or factor IX activity (<1 IU/dl) and are at risk of spontaneous bleeds in joints, soft tissue and muscles.1 In the Netherlands, regular replacement therapy (prophylaxis) to prevent bleeding and subsequent joint damage is a standard treatment.1 This replacement therapy consists of intravenously self-administered clotting factor concentrate 2-3 times/week, usually started before the age of 3 years.1 In young children, parents generally perform these injections. [Extracted from the article]

In recent years, sports participation in Dutch patients with haemophilia (PWH) has been comparable to the general population (GP), especially in children.3,4 The recent COVID-19 pandemic has forced governments worldwide to take drastic actions. Physical activity (PA) in general and sports participation in particular have been promoted for years for their positive effects on human health.1 This applies to both healthy persons and persons with congenital, chronic diseases, such as haemophilia.2 Because of these positive health effects, PA and sports participation have been advocated by haemophilia physicians since the introduction of prophylactic infusions in the 1970s and 1980s. Despite an abundancy of literature regarding exercise strategies during, and return to sports after the COVID-19 pandemic, we were only able to identify three studies on the effects of the social restrictions on sports. [Extracted from the article]

Background:  Little is known on how sports participation affects bleeding risk in hemophilia. This study aimed to examine associations between sports participation, factor VIII (FVIII) levels and bleeding in persons with hemophilia A., Methods:  In this observational, prospective, single-center study, persons with hemophilia A who regularly participated in sports were followed for 12 months. The associations of patient characteristics, FVIII levels, and type/frequency of sports participation with bleeding were analyzed by repeated time-to-event modelling., Results:  One hundred and twelve persons (median age: 24 years [interquartile range:16-34], 49% severe, 49% on prophylaxis) were included. During follow-up, 70 bleeds of which 20 sports-induced were observed. FVIII levels were inversely correlated with the bleeding hazard; a 50% reduction of the baseline bleeding hazard was observed at FVIII levels of 3.1 and a 90% reduction at 28.0 IU/dL. The bleeding hazard did not correlate with sports participation. In addition, severe hemophilia, prestudy annual bleeding rate, and presence of arthropathy showed a positive association with the bleeding hazard., Conclusion:  This analysis showed that FVIII levels were an important determinant of the bleeding hazard, but sports participation was not. This observation most likely reflects the presence of adequate FVIII levels during sports participation in our study. Persons with severe hemophilia A exhibited a higher bleeding hazard at a similar FVIII levels than nonsevere, suggesting that the time spent at lower FVIII levels impacts overall bleeding hazard. These data may be used to counsel persons with hemophilia regarding sports participation and the necessity of adequate prophylaxis., Competing Interests: O.V. has received speakers fees from Novo Nordisk and received research support from Bayer. M.H.C. has received investigator-initiated research grants over the years from the Netherlands Organization for Scientific Research (NWO), the Netherlands Organization for Health Research and Development (ZonMw), the Dutch “Innovatiefonds Zorgverzekeraars,” Baxter/Baxalta/Shire, Pfizer, Bayer Schering Pharma, CSL Behring, Sobi, Biogen, Novo Nordisk, Novartis, and Nordic Pharma, and has served as a steering board member for Roche and Bayer. All grants, awards, and fees go to the Erasmus MC as institution. M.O.K. received grants from Bayer, Roche, and Merck. R.A.A.M. reports grants from Bayer, grants from Shire, grants from Merck Sharpe Dome, grants from CSL Behring, other from Bayer, other from Shire, outside the submitted work. K.F. has received speaker's fees from Bayer, Baxter/Shire, Sobi/Biogen, CSL Behring, Octapharma, Pfizer, and Novo Nordisk, and has performed consultancy for Bayer, Baxter, Biogen, CSL Behring, Freeline, Novo Nordisk, Pfizer, Roche, and Sobi. She and/or her institution has received research support from Bayer, Pfizer, Baxter/Shire, and Novo Nordisk. The remaining authors declare no competing financial interests. All unrestricted research grants, awards, educational grants, and consultancy fees have been forwarded to the respective institutions., (The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/).)