Several members of the EAHAD Physiotherapists Network attended and presented at the World Confederation for Physical Therapy (WCPT) Congress 2019, the profession’s leading global meeting in Geneva in May 2019. More than 5000 colleagues from 131 countries attended the 3-day congress to hear global perspectives showcasing the best in physiotherapy research and practice. As well as raising the profile of haemophilia care for physical therapists through peer-reviewed presentations, they participated in a “Indaba” session on haemophilia. Indaba is a meeting and inspiration zone where delegates can meet informally to discuss a topic without the traditional barrier between a speaker and the audience. The session highlighted that treatment for people with haemophilia is “more than just factor” and physiotherapy has enormous benefits where access to clotting factor treatment is limited.
The EAHAD Physiotherapists Committee presented the results of the recent pan-European survey of the scope of practice of physiotherapists involved in the care of people with haemophilia in Europe. The survey found that there is substantial diversity between countries and, in particular, that there is marked variability in access to physiotherapy treatment and the autonomy of physiotherapists to make independent assessment and treatment decisions. It recommends that establishing a European network of physiotherapists is needed in rare conditions such as haemophilia to define the scope of practice and role for physiotherapists as well as developing training and competency frameworks together with mentorship programmes to enhance provision and quality of care and improve patient outcomes.
David Stephensen presented the results of a recent feasibility randomised controlled trial of a muscle strengthening programme for children with haemophilia. The feasibility RCT recruited 75% of eligible participants with 100% follow-up rate. Participants reported feeling satisfied with the group they were allocated and understood the logic of randomisation and needing a control arm of the trial. Adherence to the intervention was 100% in the first ten weeks and 62.5% during the last two weeks. Although efficacy was not the aim of this study, muscle strength of ankle plantar flexors and knee extensors, distance walked in six-minutes and time taken to ascend and descend 12 steps improved in children receiving the intervention compared to those who did not.
Merel Timmer presented the results of her study identifying phenotypes of movement behaviour within persons with haemophilia and the clinical characteristics between those phenotypes. Three phenotypes of movement behaviour were identified in persons with haemophilia. Most persons with haemophilia were sedentary. The “bikers and runners” had a better joint health and experienced less limitations in activities than the “walkers” and “sedentary” persons. The “walkers” perceived fewer limitations in activities than the “sedentary” but had comparable joint health. The results of the study subscribe the importance of assessment of movement behaviour as a total, as opposed to using a single parameter, in clinical practice and in scientific research. Furthermore, the results indicate that the regular walking and less sitting is feasible and beneficial for persons with haemophilic arthropathy.