The multiple benefits of sport in haemophilia

Farrugia, Albert; Gringeri, A.; Mackensen, Sylvia von

doi:10.1111/hae.13496

Cited by 2 publications

(5 citation statements)

References 15 publications

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“…Advice about what activities children with haemophilia should avoid has changed in recent years, and many children are now allowed to take part in physical education lessons at school as long as they avoid contact sports such as rugby and hockey (Farrugia, Gringeri, & von Mackensen, 2018 ; Howell, Scott, & Patel, 2017 ). Any activities that may cause head injury need to be avoided at all costs, as intracranial bleeding represents one of the biggest risks.…”

Section: Resultsmentioning

confidence: 99%

Adherence to prophylaxis in adolescents and young adults with severe haemophilia A, a qualitative study with patients

Troop

Ryder

et al. 2018

Health Psychology and Behavioral Medicine

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Introduction: Reported levels of adherence to prophylaxis among young people with haemophilia (YPH) vary widely and are predominately based on estimations made by healthcare professionals and parents. Reasons for (non)adherence among YPH in particular have not been evidenced. Aim: to examine experiences in relation to prophylaxis with YPH themselves, and barriers and facilitators to their adherence. Methods: 11 Participants were recruited in five haemophilia centres across England and Wales. All patients who met the inclusion criteria (aged 12-25, diagnosed with haemophilia, on prophylaxis) were approached during a routine check-up appointment, and all participants who agreed to take part were interviewed. Interviews were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis. Results: Self-reported adherence to prophylaxis was good. Few participants admitted to intentionally skipping injections although they reported sometimes forgetting. However, due to the increasingly personalised and flexible approach to prophylaxis, adherence is not straightforward to define. Barriers to adherence included a busy lifestyle, dislike of the intravenous injection, venous access issues, anxiety or stress and being out of one's normal routine. Support was an important facilitator to adherence, including support from health professionals at the haemophilia centre as well as friends. Parents appear to be very involved with their child's haemophilia management, even after they leave home. Conclusion: What this study adds is that the increasingly flexible and personalised approach to managing prophylaxis in haemophilia may sometimes lead to confusion around treatment frequency and dosing. This may lead to accidental non-adherence, which is distinct from both skipping and forgetting. Advice from haemophilia teams may not always be consistent and is likely to be interpreted differently by different individuals. Some additional training and education of patients and their families to increase their knowledge and skills around prophylaxis may reduce this confusion and therefore is likely to improve adherence further.

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Section: Resultsmentioning

confidence: 99%

Adherence to prophylaxis in adolescents and young adults with severe haemophilia A, a qualitative study with patients

Troop

Ryder

et al. 2018

Health Psychology and Behavioral Medicine

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“…We identified 16 articles dealing with the performance of sports by PWH supervised by a physiotherapist. 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 In 1996, Buzzard 69 published for the first time a review dealing with sport in PWH. The review highlighted the need for PWH to start physical activity as soon as possible, encouraging them to continue it regularly.…”

Section: Resultsmentioning

confidence: 99%

“…Other studies and reviews have emphasized and summarized the multiple benefits that sport can bring to PWH if practiced with appropriate recommendations and programmes. 80 , 81 , 82 The timeline of physiotherapy evolution compared to the evolution of the haemophilia treatments is represented in Figure 2 .…”

Section: Resultsmentioning

confidence: 99%

“…We identified 16 articles dealing with the performance of sports by PWH supervised by a physiotherapist 67–82 . In 1996, Buzzard 69 published for the first time a review dealing with sport in PWH.…”

Section: Resultsmentioning

confidence: 99%

“…Like him, other top athletes with haemophilia have shown that by following specific programmes it is possible to practice sports at a high level without an increasing risk, thus encouraging to practice sports also the PWH who are not professional athletes. Other studies and reviews have emphasized and summarized the multiple benefits that sport can bring to PWH if practiced with appropriate recommendations and programmes 80–82 . The timeline of physiotherapy evolution compared to the evolution of the haemophilia treatments is represented in Figure 2.…”

Section: Resultsmentioning

confidence: 99%

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The evolution of physiotherapy in the multidisciplinary management of persons with haemophilia (PWH): A scoping review

et al. 2022

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Introduction:Haemophilia is a rare congenital bleeding disorder, and the most common manifestation is spontaneous bleeding in muscles and joints. Despite the benefits linked to recent and dramatic pharmacological advances at least in high income setting, many patients still develop musculoskeletal dysfunctions during their lifetime, which must be managed by physiotherapists in the frame of a multidisciplinary team. The aim of the scoping review is to map the available evidence by providing an overview on the past and present physiotherapy scenario in persons with haemophilia (PWH). Materials and methods: The review was conducted according to the guidelines of the PRISMA extension for scoping reviews. Scientific articles on physiotherapy and sport interventions for PWH published from 1960 up to September 2021 have been included. Search was conducted on the e-databases PubMed and PEDro without restrictions for the study design. Results: Sixty eight articles were included, 52 related to rehabilitation and preventive physiotherapy, 16 to sport. The results have been reported in chronological order and divided into two categories: (1) rehabilitation and preventive physiotherapy; (2) sport activities.Conclusions: This is the first scoping review on physiotherapy in haemophilia, based on the existing evidence on this topic which allowed us to underline how the role of the physiotherapist changed over time. Historically this specialist did intervene only after an acute bleed or surgical operation, but now he has a pivotal role in the multidisciplinary team that acts to improve from birth the quality of life of the PWH. His activity is also closely intertwined with sport promotion and supervision.

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The multiple benefits of sport in haemophilia

Cited by 2 publications

References 15 publications

Adherence to prophylaxis in adolescents and young adults with severe haemophilia A, a qualitative study with patients

Adherence to prophylaxis in adolescents and young adults with severe haemophilia A, a qualitative study with patients

The evolution of physiotherapy in the multidisciplinary management of persons with haemophilia (PWH): A scoping review

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