- Email: [email protected]
Editorial commentary on ‘Toolbox of multi-item measures aligning with ICF core sets for children and youth with cerebral palsy’
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 1 ( 2 0 1 7 ) 2 5 0 e2 5 1
Official Journal of the European Paediatric Neurology Society
Editorial
Editorial commentary on ‘Toolbox of multi-item measures aligning with ICF core sets for children and youth with cerebral palsy’
We all know that choosing the most appropriate test from the wide variety of measures devised to assess function and interventional outcomes in children and young people with cerebral palsy can be confusing for both researchers and busy clinicians alike. Dr Schiariti's group has provided a comprehensive and robust overview of the current English Language options in line with the ICF framework. As part of this process they also, appropriately, highlight the important role of using validated measures to help us collaborate on an international perspective. It is however important that any comparative data is used to improve services and policy development rather than provide yet another level of managerial hierarchy. When used appropriately by clinicians, they can only help us all develop clear patient algorithms and pathways of care to optimise clinical health and development. In their paper1 the team show a clear logical progression in the identification, categorization and then linkage of validated multi item measures across chronological and developmental spectrums and also across their 5 ICF and Health core sets, previously outlined.2 The development of any ‘toolbox’ is primarily of use in research; those of us working in a busy clinical practice are more challenged, not least from a time perspective, but also, as they recognise, in resources. Routine service provision rarely allows half an hour to focus on bimanual function, and another hour for gross motor function, but any categorisation of areas within an internationally recognised framework helps us in the process of communication within and between services. The final aspect of the study focussing on time, access, equity and finance proposed a limited core set aligned across health e was aimed at answering this problem of clinical utility. Trying to answer such complex and important
DOI of original article: http://dx.doi.org/10.1016/j.ejpn.2016.10. 007.
questions in a simple way can easily seem slightly overwhelming to the average reader (and believe me I'm average). However, I would wholeheartedly recommend sticking with it, re-reading and careful reflection by any clinician involved in the care of children and young people with cerebral palsy as there is so much useful information provided. Their alignment provides us all with a useful guide to where we currently are in validated assessment for practice as well as identifying the gaps in testing, openly recognising the limitations and future direction of travel. As such, flying from London to Munich via New York isn't always the best route in spite of what the value website may say. A concern still remains in that children are unpredictable e part of the challenge and joy of being a Paediatrician. Managing health and function in a population of children and young people with such remarkable differences and difficult co-morbidity adds a whole new level of complexity. There is only so much information that any validated measure can provide. As such the challenges of measuring learning, communication and pain are highlighted. As they recognise, there is a risk that clinical management may become over reliant on a variety of toolboxes and traffic lights, in that the key perspective of open reflective minds on holistic care may seem to be of secondary importance. Toolboxes are useful, vital in many instances, they help in a whole variety of ways; but they are not comprehensive. Family and Patient centred care means we shouldn't lose the paintbrush under the hammers, spanners and screwdrivers. One plea e there will always be the need to nurture the art of our multidisciplinary practice rather than focussing entirely on the science and service delivery. Skills that are so much more difficult to measure.
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 1 ( 2 0 1 7 ) 2 5 0 e2 5 1
references
1. Schiariti V, Tatla S, Sauve K, O'Donnell M. Toolbox of multipleitem measures aligning with the ICF Core Sets for children and youth with cerebral palsy. Eur J Paediatr Neurol EJPN 2017;21:252e63. 2. Schiariti V, Selb M, Cieza A, O'Donnell M. International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting. Dev Med Child Neurol 2015;57(2):149e58. http:// dx.doi.org/10.1111/dmcn.12551.
251
Charlie Fairhurst Head of Paediatric Neurosciences, Evelina London Children's Hospital, Guys and St Thomas' Hospitals NHS Trust, London, UK E-mail address: [email protected] http://dx.doi.org/10.1016/j.ejpn.2017.01.008 1090-3798/© 2017 Published by Elsevier Ltd on behalf of European Paediatric Neurology Society.
Official Journal of the European Paediatric Neurology Society
Editorial
Editorial commentary on ‘Toolbox of multi-item measures aligning with ICF core sets for children and youth with cerebral palsy’
We all know that choosing the most appropriate test from the wide variety of measures devised to assess function and interventional outcomes in children and young people with cerebral palsy can be confusing for both researchers and busy clinicians alike. Dr Schiariti's group has provided a comprehensive and robust overview of the current English Language options in line with the ICF framework. As part of this process they also, appropriately, highlight the important role of using validated measures to help us collaborate on an international perspective. It is however important that any comparative data is used to improve services and policy development rather than provide yet another level of managerial hierarchy. When used appropriately by clinicians, they can only help us all develop clear patient algorithms and pathways of care to optimise clinical health and development. In their paper1 the team show a clear logical progression in the identification, categorization and then linkage of validated multi item measures across chronological and developmental spectrums and also across their 5 ICF and Health core sets, previously outlined.2 The development of any ‘toolbox’ is primarily of use in research; those of us working in a busy clinical practice are more challenged, not least from a time perspective, but also, as they recognise, in resources. Routine service provision rarely allows half an hour to focus on bimanual function, and another hour for gross motor function, but any categorisation of areas within an internationally recognised framework helps us in the process of communication within and between services. The final aspect of the study focussing on time, access, equity and finance proposed a limited core set aligned across health e was aimed at answering this problem of clinical utility. Trying to answer such complex and important
DOI of original article: http://dx.doi.org/10.1016/j.ejpn.2016.10. 007.
questions in a simple way can easily seem slightly overwhelming to the average reader (and believe me I'm average). However, I would wholeheartedly recommend sticking with it, re-reading and careful reflection by any clinician involved in the care of children and young people with cerebral palsy as there is so much useful information provided. Their alignment provides us all with a useful guide to where we currently are in validated assessment for practice as well as identifying the gaps in testing, openly recognising the limitations and future direction of travel. As such, flying from London to Munich via New York isn't always the best route in spite of what the value website may say. A concern still remains in that children are unpredictable e part of the challenge and joy of being a Paediatrician. Managing health and function in a population of children and young people with such remarkable differences and difficult co-morbidity adds a whole new level of complexity. There is only so much information that any validated measure can provide. As such the challenges of measuring learning, communication and pain are highlighted. As they recognise, there is a risk that clinical management may become over reliant on a variety of toolboxes and traffic lights, in that the key perspective of open reflective minds on holistic care may seem to be of secondary importance. Toolboxes are useful, vital in many instances, they help in a whole variety of ways; but they are not comprehensive. Family and Patient centred care means we shouldn't lose the paintbrush under the hammers, spanners and screwdrivers. One plea e there will always be the need to nurture the art of our multidisciplinary practice rather than focussing entirely on the science and service delivery. Skills that are so much more difficult to measure.
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 1 ( 2 0 1 7 ) 2 5 0 e2 5 1
references
1. Schiariti V, Tatla S, Sauve K, O'Donnell M. Toolbox of multipleitem measures aligning with the ICF Core Sets for children and youth with cerebral palsy. Eur J Paediatr Neurol EJPN 2017;21:252e63. 2. Schiariti V, Selb M, Cieza A, O'Donnell M. International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting. Dev Med Child Neurol 2015;57(2):149e58. http:// dx.doi.org/10.1111/dmcn.12551.
251
Charlie Fairhurst Head of Paediatric Neurosciences, Evelina London Children's Hospital, Guys and St Thomas' Hospitals NHS Trust, London, UK E-mail address: [email protected] http://dx.doi.org/10.1016/j.ejpn.2017.01.008 1090-3798/© 2017 Published by Elsevier Ltd on behalf of European Paediatric Neurology Society.