Development of a haemophilia physiotherapy intervention for optimum musculoskeletal health (Dolphin trial)

Abstract

Introduction: Haemophilic arthropathy is associated with muscle weakness and may be reduced prior to the onset of clinical arthropathy.Muscle weakness is strongly correlated to reduced walking distances, slower ascent and descent of stairs, and altered joint motion and forces during weight bearing activities. Our aim was to develop a muscle strengthening exercise intervention for children that could be tested in a randomised clinical trial. Methods: We conducted modified Nominal Group Technique focus groups with academic experts and specialist physiotherapists, and most importantly in consultation with patients. The exercise programme was demonstrated to five boys with haemophilia and their parents. Children and parents were asked; what they thought about the exercises and whether they could undertake them on a regular basis, where they thought the best place was for undertaking them, and how they would like to receive information on the exercise programme. They were also asked questions about how they would feel about taking part in a study testing the benefits of the exercises, issues around being allocated randomly into study groups, and what would encourage the children to continue on the exercise programme. Results: Strong consensus from physiotherapists indicated the exercise programme should include exercises focused on strength, balance, proprioception, flexibility and mobility, and a motor learning component. Families noted the best place for the intervention being carried out was at home and that twice per week would be achievable. Parents felt that in order to sustain interest and motivation, it was important to build in an incentive that would be valued by the child. They also said that in order to find out whether or not the exercise programme worked, they would not have a problem with their child being allocated into an intervention or usual care groups. Discussion/Conclusion: Engaging clinicians and patients in partnership as part of the research process enhanced the design of an exercise intervention ensuring it is acceptable and potentially beneficial for children with chronic disorders. The efficacy of a 24-session progressive exercise programme of stretching, strengthening, balance, proprioceptive and mobility using functional movement patterns is currently being tested in a randomised controlled trial