Measuring participation for children with mobility limitations: a modified Delphi survey for those who use power mobility CHARLENE BUTLER Past-President, American Academy for Cerebral Palsy and Developmental Medicine. doi: 10.1111/dmcn.12648 This commentary is on the original article by Field et al. on pages 556– 563 in this issue.
The study by Field et al.1 is important and timely, enlightening us from several perspectives. (1) It is now widely appreciated that ‘participation’ is a critical outcome of interventions that needs to be measured, yet we have little understanding of how to do so. (2) The study addresses this question from the perspective of the WHO International Classification of Functioning, Disability and Health (ICF), which has been officially adopted by over 90 nations. (3) It identifies and discusses elements to be considered in defining and measuring participation: who, what, where, and how. (4) The study focuses on exploring the different viewpoints of primary stakeholders (child, parents, therapists, physicians) and reports the intention to extend the study to include additional stakeholders (teachers, policy makers). (5) It addresses powered mobility, an intervention that has been controversial, especially for the very young child. (6) It explores measurement of participation for very young, as well as school-aged children, who are given the opportunity to use powered mobility. (7) The study demonstrates a type of research appropriate for finding common ground among various disciplines plus the child patient and parents in a multidisciplinary field such as developmental medicine. (8) Moreover, the study was well conducted and thoroughly reported which provides transparency of procedure as well as results. This makes it possible for others to replicate this particular study, but also provides a template for how to tap into various viewpoints about other outcomes of particular interest to
children and families where chronic conditions must be managed to provide maximum independence, functional activity, and societal participation to promote overall child development and well-being. In 1994, when the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) undertook to bring the field of developmental medicine into the practice of evidence-based medicine, the primary concern was how to evaluate the strength and type of research evidence available in developmental medicine. Dr Peter Rosenbaum, later President of the AACPDM, observed that one of the additional critical issues in understanding types of outcomes available was ‘outcomes – of interest to whom?’ He pointed out that research outcomes were determined by the study investigators depending on their particular discipline and area of interest. The study by Field et al. is among the first to address this important aspect of outcomes measurement. Few outcomes then, and even now, have been measured to inform us about the ICF outcome categories of activity or participation. In part, this is due to the lack of outcomes measures appropriate for the task. These investigators are among the first to address the ‘who’ in outcomes and to seek common concerns about what to measure, in order to use that information to develop measurement tools. The study is timely in that the AACPDM has recently completed a strategic plan for partnership with sister academies around the world to again move the field forward in research and practice. This plan identifies five high-priority projects: common data elements for measurement of outcomes, meaningful outcomes, international alliances, pathways of care, and collaborative planning with the US National Institutes of Health for research in cerebral palsy. All of these initiatives depend on having, or creating, the kind of information this study provides.
REFERENCE 1. Field DA, Miller WC, Jarus T, Ryan SE, Roxborough L. Important elements of measuring participation for
children who need or use power mobility: a modified Delphi survey. Dev Med Child Neurol 2015; 57: 556–63.
500 Developmental Medicine & Child Neurology 2015, 57: 497–503
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
The study by Field et al.1 is important and timely, enlightening us from several perspectives. (1) It is now widely appreciated that ‘participation’ is a critical outcome of interventions that needs to be measured, yet we have little understanding of how to do so. (2) The study addresses this question from the perspective of the WHO International Classification of Functioning, Disability and Health (ICF), which has been officially adopted by over 90 nations. (3) It identifies and discusses elements to be considered in defining and measuring participation: who, what, where, and how. (4) The study focuses on exploring the different viewpoints of primary stakeholders (child, parents, therapists, physicians) and reports the intention to extend the study to include additional stakeholders (teachers, policy makers). (5) It addresses powered mobility, an intervention that has been controversial, especially for the very young child. (6) It explores measurement of participation for very young, as well as school-aged children, who are given the opportunity to use powered mobility. (7) The study demonstrates a type of research appropriate for finding common ground among various disciplines plus the child patient and parents in a multidisciplinary field such as developmental medicine. (8) Moreover, the study was well conducted and thoroughly reported which provides transparency of procedure as well as results. This makes it possible for others to replicate this particular study, but also provides a template for how to tap into various viewpoints about other outcomes of particular interest to
children and families where chronic conditions must be managed to provide maximum independence, functional activity, and societal participation to promote overall child development and well-being. In 1994, when the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) undertook to bring the field of developmental medicine into the practice of evidence-based medicine, the primary concern was how to evaluate the strength and type of research evidence available in developmental medicine. Dr Peter Rosenbaum, later President of the AACPDM, observed that one of the additional critical issues in understanding types of outcomes available was ‘outcomes – of interest to whom?’ He pointed out that research outcomes were determined by the study investigators depending on their particular discipline and area of interest. The study by Field et al. is among the first to address this important aspect of outcomes measurement. Few outcomes then, and even now, have been measured to inform us about the ICF outcome categories of activity or participation. In part, this is due to the lack of outcomes measures appropriate for the task. These investigators are among the first to address the ‘who’ in outcomes and to seek common concerns about what to measure, in order to use that information to develop measurement tools. The study is timely in that the AACPDM has recently completed a strategic plan for partnership with sister academies around the world to again move the field forward in research and practice. This plan identifies five high-priority projects: common data elements for measurement of outcomes, meaningful outcomes, international alliances, pathways of care, and collaborative planning with the US National Institutes of Health for research in cerebral palsy. All of these initiatives depend on having, or creating, the kind of information this study provides.
REFERENCE 1. Field DA, Miller WC, Jarus T, Ryan SE, Roxborough L. Important elements of measuring participation for
children who need or use power mobility: a modified Delphi survey. Dev Med Child Neurol 2015; 57: 556–63.
500 Developmental Medicine & Child Neurology 2015, 57: 497–503
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
