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INTRODUCTION: Physical activity (PA) is influenced by numerous factors, and the literature describing why people with haemophilia (PWH) are physically active or not is inconclusive. AIMS: To investigate factors associated with PA (mean min/day in light (LPA), moderate (MPA), vigorous (VPA) and total PA, and proportion meeting World Health Organization (WHO) weekly moderate-to-vigorous (MVPA) recommendations) among young PWH A. METHODS: Forty PWH A on prophylaxis from the HemFitbit study were included. PA was measured using Fitbit devices and participant characteristics were collected. Potential factors associated with PA were investigated by univariable linear regression models for continuous PA outcomes, and descriptively for teenagers meeting/not meeting WHO MVPA recommendations only, because all except one adult met PA recommendations. RESULTS: Mean age (n = 40) was 19.5 years (SD 5.7). Annual bleeding rate was nearly zero and joint scores were low. We found an increase of four min/day in LPA (95% confidence interval (CI) 1-7) per year increase in age. Participants with 'Haemophilia Early Arthropathy Detection with Ultrasound' (HEAD-US) score ≥1 engaged in mean 14 min/day less MPA (95% CI -23.2 to -3.8), and 8 min less VPA (95% CI -15.0 to -0.4) compared to participants with HEAD-US score 0. Teenagers who met PA recommendations had slightly better joint status compared to those who did not meet recommendations. CONCLUSION: These findings indicate that presence of mild arthropathy does not affect LPA but may have a negative impact on PA of higher intensities. Early start of prophylaxis may be an important determinant of PA.

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INTRODUCTION: Limited evidence exists on objectively measured habitual physical activity (PA) of young people with haemophilia (PWH). AIMS: To compare different outcomes of objective PA between young PWH A and controls using a commercial activity tracker. METHODS: We enrolled males aged 13-30 years with moderate and severe haemophilia A, without inhibitors on regular prophylaxis. PA was measured with the activity tracker Fitbit Charge 3 for 12 weeks. Control group data was obtained from ≈60,000 Fitbit users, matched on age, sex and measurement period. PA variables [steps, intensities, volume, activity types, exercise frequencies and proportion meeting the World Health Organization's moderate-to-vigorous PA (MVPA) recommendations] were compared between groups descriptively and using Welch's two-sample t-test and two-sample test of proportions. RESULTS: Forty PWH A were enrolled (mean age 19.5 years, 50% teenagers, 50% adults, three (7.5%) with moderate and 37 (92.5%) with severe haemophilia). Mean daily steps and minutes MVPA were similar between PWH and controls. PWH spent more time in light PA (mean 227 vs. 192 min/day, P = .033) and exercised more frequently (mean 5.6 vs. 3.9 exercise sessions/week, P < .001). Among teenagers, 40% PWH and 8% controls reached MVPA recommendations, compared to 95% and 100% among adults. The most common type of PA was walking. CONCLUSION: This cohort of young PWH A on prophylactic treatment had PA levels comparable to controls. Still, a considerable proportion of teenagers did not meet the recommended weekly volume of MVPA, and we encourage clinicians to have a particular focus on promoting PA for this group.

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INTRODUCTION: Measurement of physical activity (PA) using commercial activity trackers such as Fitbit devices has become increasingly popular, also for people with haemophilia (PWH). The accuracy of the Fitbit model Charge 3 has not yet been examined. AIMS: To compare the Fitbit Charge 3 against the research-grade accelerometer ActiGraph GT3X-BT in measuring average daily steps and minutes spent in different PA intensities. METHODS: Twenty-four young PWH wore a wrist-worn Fitbit Charge 3 and hip-worn ActiGraph GT3X-BT simultaneously for seven consecutive days in free-living conditions. Correlation of and differences between the devices for daily averages of PA parameters were assessed using Pearson's correlation coefficient and paired t-test, respectively. Agreement between devices was assessed using Bland-Altman plots. RESULTS: Twenty participants (mean age 21.8) were included in the analyses. We found moderate to high correlations between Fitbit and ActiGraph measured daily averages for all PA variables, but statistically significant differences between devices for all variables except daily minutes of moderate PA. Fitbit overestimated average daily steps, minutes of light, vigorous and moderate-to-vigorous PA. Bland-Altman plots showed a measurement bias between devices for all parameters with increasing overestimation by the Fitbit for higher volumes of PA. CONCLUSION: The Fitbit Charge 3 overestimated steps and minutes of light, moderate and moderate-to-vigorous PA as compared to the ActiGraph GT3X-BT, and this bias increased with PA volume. The Fitbit should therefore be used with caution in research, and we advise users of the device to be cognizant of this overestimation.

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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.

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INTRODUCTION: European guidelines on the care of haemophilia recommend ready access to a range of services provided by a multidisciplinary team of specialists including physiotherapy. However, the scope of physiotherapy provided is unknown. METHODS: The Physiotherapists Committee of the European Association for Haemophilia and Allied Disorders (EAHAD) conducted a web-based survey to quantify the role and scope of practice of physiotherapists involved in haemophilia care. The survey was sent to more than 200 physiotherapists registered on the EAHAD database. Questions concerned their work practices including assessment and treatment activities and level of autonomy. RESULTS: Eighty physiotherapists from twenty-four European countries responded. Considerable heterogeneity exists in roles, responsibilities, and clinical practice of physiotherapists, particularly in access to and type of physiotherapy treatment provided, as well as the skill set and autonomy of physiotherapists to make independent assessment and treatment decisions. DISCUSSION: This pan-European survey establishes a context to support physiotherapy role development and professional identity. Key recommendations include the following: (a) establishing a pan-European network to support collaboration and education for physiotherapists working in haemophilia, (b) developing a core skills and capability framework to ensure person-centred approaches are central as well as working in partnership with those with the condition to maximize early recovery, support self-management and enablement in remaining active and independent, (c) regular training, standardized validation and maintenance of competency for assessment tools, (d) well-designed randomized clinical studies with larger numbers of participants from multiple sites should be the focus of future research.

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