There is considerable common ground in paediatric orthopaedic conditions that affect the lower limb(s): deformity, joint stiffness, pain and impaired mobility are the usual problems associated with these conditions. Although the aetiology of these conditions varies considerably, the clinical problems and the resulting motor disability are similar and this is what matters from the patient/family perspective.
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are groups or individuals who will commit to supporting the PSP by disseminating the PSP survey and helping the PSP to gather questions and uncertainties of practical clinical importance relating to the treatment and management of the health problem in question. Partners represent the following groups:
- people who have had conditions that have required elective (planned) lower limb orthopaedic surgery
- carers of people who have had elective (planned) lower limb orthopaedic surgery
- medical doctors, nurses and professionals allied to medicine with clinical experience of paediatric orthopaedic surgery to the lower limbs
To this effect, BSCOS, the British Orthopaedic Association (BOA) and the Oxford Biomedical Research Centre have jointly agreed to fund this partnership and support the setting of priorities for research in this field.
Both the professional society and the relevant Parent/Patient Charity have recognized the need for research in this field of paediatric orthopaedics and understand the importance of setting priorities for research as the first step in this direction. The main Patient organisation relevant to this partnership is STEPS, a Charity supporting children and families affected by lower limb conditions.
Children and young people under the age of 16 years will be encouraged to voice their views separately to those of their parents. During the survey period, parents will be asked to encourage their children to fill in a separate survey form. By inviting children to participate via their parents (or legal guardians) we will ensure that issues of consent and safeguarding do not arise.
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to adversely affect those organisations’ views, causing unacceptable bias. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.