Stephensen D1,2,3, Bladen M4, Carroll L5, Drechsler W6, Lowery D7, Pellatt-Higgins T7, Saloniki E7, Hashem F7
1East Kent Hospitals University NHS Trust, Haemophilia and Thrombosis Centre, Canterbury, United Kingdom, 2Royal London Hospital, Haemophilia Centre, London, United Kingdom, 3Canterbury Christ Church University, Allied Health Department, Canterbury, United Kingdom, 4Great Ormond Street Hospital NHS Trust, Haemophilia Centre, London, United Kingdom, 5Haemophilia Society UK, London, United Kingdom, 6Kings College London, Department of Public Health Sciences, London, United Kingdom, 7University of Kent, Centre for Health Service Studies, Canterbury, United Kingdom
Background: It is well established that muscle weakness is associated with haemophilic arthropathy in adults and it is now apparent that muscle strength is reduced in children, prior to the onset of clinical arthropathy. Furthermore, muscle weakness is strongly correlated to muscle atrophy, reduced walking distances, slower ascent and descent of stairs, as well as reduced ankle joint motion, greater knee flexion motion and forces during walking.
Purpose: This qualitative study aimed to develop an optimal muscle strengthening exercise intervention for children, with input from academic experts and specialist physiotherapists, and most importantly in consultation with patients.
Methods: We conducted a modified Nominal Group Technique (NGT) focus group of 11 participants (7 specialist haemophilia physiotherapists, 2 paediatric musculoskeletal physiotherapists and 2 academic physiotherapists). The NGT meeting involved open discussion on features of the exercise intervention followed by anonymous rating of the key features using a prepared Likert scale, which was repeated after further discussion. The exercise programme was demonstrated to five boys with haemophilia and their parents. The parents and children were asked about 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 the information on the exercise programme. Parents and children were then asked questions about how they would feel about taking part in study testing the benefits of the exercises, issues around being allocated randomly into study groups, and then questions about what would encourage the children to continue on the exercise programme with discussions focusing upon types of rewards and incentivisation.
Results: Strong consensus from the physiotherapists indicated the exercise programme should be age accommodating and a minimum of 16 sessions; include exercises focused on strength, balance, proprioception, flexibility and mobility; include a motor learning component; include exercises for the lower limb kinetic chain, not just the ankle and include exercises for the intrinsic muscles of the foot. The parents acknowledged that the exercises would be difficult at the beginning, and the boys needed time to learn them. The families noted the best place for the intervention being carried out was at home and that twice per week would be achievable. The 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, otherwise their enthusiasm in continuing on the programme could decline. The parents noted 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.
Conclusion(s): Engaging clinicians and patients in partnership as part of the research process enhanced the design of an exercise intervention that is acceptable and potentially beneficial for children with chronic disorders.
Implications: 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.
Keywords: Haemophilia, Patient Involvement, Children
Funding acknowledgements: National Institute of Health Research, Research for Patient Benefit PB-PG-0125-36091
Purpose: This qualitative study aimed to develop an optimal muscle strengthening exercise intervention for children, with input from academic experts and specialist physiotherapists, and most importantly in consultation with patients.
Methods: We conducted a modified Nominal Group Technique (NGT) focus group of 11 participants (7 specialist haemophilia physiotherapists, 2 paediatric musculoskeletal physiotherapists and 2 academic physiotherapists). The NGT meeting involved open discussion on features of the exercise intervention followed by anonymous rating of the key features using a prepared Likert scale, which was repeated after further discussion. The exercise programme was demonstrated to five boys with haemophilia and their parents. The parents and children were asked about 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 the information on the exercise programme. Parents and children were then asked questions about how they would feel about taking part in study testing the benefits of the exercises, issues around being allocated randomly into study groups, and then questions about what would encourage the children to continue on the exercise programme with discussions focusing upon types of rewards and incentivisation.
Results: Strong consensus from the physiotherapists indicated the exercise programme should be age accommodating and a minimum of 16 sessions; include exercises focused on strength, balance, proprioception, flexibility and mobility; include a motor learning component; include exercises for the lower limb kinetic chain, not just the ankle and include exercises for the intrinsic muscles of the foot. The parents acknowledged that the exercises would be difficult at the beginning, and the boys needed time to learn them. The families noted the best place for the intervention being carried out was at home and that twice per week would be achievable. The 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, otherwise their enthusiasm in continuing on the programme could decline. The parents noted 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.
Conclusion(s): Engaging clinicians and patients in partnership as part of the research process enhanced the design of an exercise intervention that is acceptable and potentially beneficial for children with chronic disorders.
Implications: 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.
Keywords: Haemophilia, Patient Involvement, Children
Funding acknowledgements: National Institute of Health Research, Research for Patient Benefit PB-PG-0125-36091
Topic: Paediatrics; Musculoskeletal; Research methodology & knowledge translation
Ethics approval required: Yes
Institution: London - Fulham Research Ethics Committee
Ethics committee: London - Fulham Research Ethics Committee
Ethics number: 17/LO/2043
All authors, affiliations and abstracts have been published as submitted.
