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C. Kerr1, L. Kent1, A. Ennis2, C. Orr2, I. Cleland2, C. Nugent2
1Queen's University Belfast, School of Nursing and Midwifery, Belfast, United Kingdom, 2Ulster University, Connected Health Innovation Centre, Newtownabbey, United Kingdom
Background: Children with cerebral palsy (CP) use mobility devices to address impairment, activity and participation goals such as increasing joint range, achieving independent mobility and experiencing alternative movement opportunities. In order to select meaningful outcome measures for a future clinical study, we sought to understand physiotherapist and family perspectives on outcomes of importance for children with CP when using mobility devices.
Purpose: To understand outcomes of importance when assessing the effects of mobility devices from the perspectives of children with CP and their families, and physiotherapy staff.
Methods: This stakeholder engagement project used the ‘Comprehensive ICF Core Set for Children and Youth with CP’ (Schiariti 2014) as a framework. Firstly, the research team short-listed 19/135 domains of the ICF core set for CP as being potentially amenable to change as a result of the use of mobility devices. These domains and their definitions were compiled and discussed in two workshops with families, and one workshop for physiotherapy staff. Workshop attendees were provided with copies of the short-listed domains and definitions and asked to rank them from most to least important, in their opinion, with respect to assessing the effects of mobility devices in children with CP.
Results: Sixteen families expressed interest, of whom nine adults and four children from seven families attended. The physiotherapy workshop was attended by 11 physiotherapists and three physiotherapy technical instructors.
Of the 11 short-listed ICF core set impairment domains, families ranked muscle tone, pain, joint mobility and muscle power as most important. Of the eight short-listed ICF core set activity and participation domains, families ranked maintaining a body position, moving around using equipment, walking short distances, and moving objects with lower extremities as the most important. However, for clinicians the top ranked impairment domains were: exercise tolerance, joint mobility, pain, and control of voluntary movement. The top ranked activity and participation domains were: changing basic body position, moving around using equipment, transferring oneself, and in equal fourth ranking, moving around and moving around in different locations.
Only 2/11 impairment and 1/8 activity domains were common to the ‘top 4’ in both stakeholder groups. High agreement between stakeholder groups was noted in domains perceived to be least important (weight maintenance, respiratory function and involuntary movement functions). In addition to the ICF core set domains, clinicians and families agreed that outcomes related to health-related quality of life, ease of care, and self-concept were important to capture.
Of the 11 short-listed ICF core set impairment domains, families ranked muscle tone, pain, joint mobility and muscle power as most important. Of the eight short-listed ICF core set activity and participation domains, families ranked maintaining a body position, moving around using equipment, walking short distances, and moving objects with lower extremities as the most important. However, for clinicians the top ranked impairment domains were: exercise tolerance, joint mobility, pain, and control of voluntary movement. The top ranked activity and participation domains were: changing basic body position, moving around using equipment, transferring oneself, and in equal fourth ranking, moving around and moving around in different locations.
Only 2/11 impairment and 1/8 activity domains were common to the ‘top 4’ in both stakeholder groups. High agreement between stakeholder groups was noted in domains perceived to be least important (weight maintenance, respiratory function and involuntary movement functions). In addition to the ICF core set domains, clinicians and families agreed that outcomes related to health-related quality of life, ease of care, and self-concept were important to capture.
Conclusion(s): Assessment of pain, joint range and ability to move around were key for all stakeholders when evaluating the effects of mobility devices. The lack of agreement between physiotherapy staff and families on outcomes of importance highlights the need for clear communication around the purpose of provision of mobility devices and goal-setting. It also demonstrates the need for physiotherapists to think more holistically about outcomes and move beyond traditional physiological, impairment-focused measurements.
Implications: These stakeholder engagement findings will be used to inform outcome measure selection in a future study evaluating the effects of mobility devices in children with CP.
Funding, acknowledgements: Invest Northern Ireland is acknowledged for supporting this project under the Competence Centre Programme Grant - Connected Health Innovation Centre (RD1014267).
Keywords: cerebral palsy, assessment, patient involvement
Topic: Paediatrics: cerebral palsy
Did this work require ethics approval? No
Institution: Queen's University Belfast
Committee: University Research Ethics and Governance Department
Reason: This was a patient and public involvement (PPI) project used to inform future research. Ethical review was not required.
All authors, affiliations and abstracts have been published as submitted.
