Clinicians should do more to encourage people with hemophilia to undertake regular physical activity and sporting activities, a panel of Italian experts has advised.
they wrote in a consensus paper published in Blood Transfusion.
Physical activity is not only recommended by the World Federation of Hemophilia for people with this bleeding disorder, but also recommended for everyone, depending on their age, by the World Health Organization.
People with hemophilia “are not exempt” from the WHO recommendations, noted Dr. Chiara Biasoli of the unit of transfusion medicine and Centre for Inherited Bleeding Disorders, Maurizio Bufalini Hospital in Cesena, Italy, and fellow expert panel members.
MEMO expert consensus project
To help clinicians decide when and how to recommend physical exercise to people with hemophilia, Dr. Biasoli and colleagues initiated the MEMO (Movement for Persons With Haemophilia) expert consensus project. The aim was to offer some clear practical guidance for routine practice.
The project began with a core group of 11 hemophilia experts meeting virtually in early 2020 because of the COVID-19 pandemic. The MEMO scientific committee, as they became known, formulated a set of consensus statements which they then put before members of the Italian Association of Hemophilia Centres, asking them to vote online on their level of agreement with each statement.
A modified Delphi approach was used to reach a consensus, with statements that scored 7 or higher on a 9-point rating scale moving forward into the next round of voting. A total of three voting rounds was made, which took into account the views of 40 experts, overall.
Overview of the MEMO consensus statements
The MEMO consensus statements cover three topic areas: the first four statements focus on the impact of hemophilia on movement, the next three give physical activity recommendations, and the final three look at choice and management of sporting activities.
Regarding the impact of hemophilia on movement, Dr. Biasoli and colleagues noted that “overweight and obesity are an increasing problem in PwH” and, due to their known association with poor physical health, urgently need to be addressed.
Perhaps “insufficient education by hematologists and other invoiced specialists” is at play, they suggested. Importantly, in children, “parents’ fears with consequent overprotection” may be contributing factors.
Not only is movement beneficial for improving joint function, they stated, but it’s also crucial to improving bone density and reducing the risk of joint bleeds.
Even people with inhibitors should be encouraged to be active more regularly, the expert panel said. This should of course be done with “particular caution and monitoring of the effectiveness of prophylaxis for the prevention of acute bleeding events, so that physical activity is conducted safely.”
The panel’s recommendations on sporting activities include the advice to work in a multidisciplinary team that involves hematologists, musculoskeletal specialists and specialists in sports medicine, with the latter helping decide on what sporting activity might be most appropriate. They also suggest that participation in sport should be encouraged from a young age, noting that the Canadian Hemophilia Society has issued some good tips in that regard.
Alongside the recommendations the MEMO expert panel has created four “pyramids of movement” to help clinicians visualize and discuss the recommendations with their patients.
“Physical activity can be considered as a low price intervention that can prevent/reduce the occurrence of chronic diseases and should be further encouraged,” Dr. Biasoli and fellow MEMO expert panel members concluded.
The members of the MEMO expert panel disclosed multiple financial ties with pharmaceutical companies, but none are relevant to the recommendations they made.