Charlene Butler

Effects of neurodevelopmental treatment (NDT) for cerebral palsy: an AACPDM evidence report.

The objective of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) evidence reports is to provide the biomedical research and clinical practice communities with the current state of evidence about various interventions for the management of developmental disabilities. AACPDM evidence reports aggregate all that has been published about outcomes of an intervention for a medical condition, gauge the credibility (i.e. strength of the internal validity) of that evidence, and identify gaps in our scientific knowledge. The original version of this report was published in the ‘AACPDM Database of Evidence Reports’ on the internet (www.aacpdm.org) where evidence reports are regularly updated to include new research.

Effects of powered mobility on self-initiated behaviors of very young children with locomotor disability.

This study reports the effects of powered mobility on the self‐initiated behavior of six children with various disabilities who, between 23 and 38 months of age, learnt to use motorized wheelchairs in less than three weeks. Using a multiple baseline design, two‐hour observation periods were videorecorded at 10‐day intervals before and after they achieved independent mobility. Frequency of self‐initiated interaction with objects, spatial exploration and communication with care‐giver were analyzed. Three children increased all three types of behavior; one increased in two types but decreased in interaction with objects; and two increased in spatial exploration only.

Evaluating research in developmental disabilities: a conceptual framework for reviewing treatment outcomes

The study of developmental disabilities, not being confined to one medical field, poses a challenge in evaluating outcomes research. It is a multidisciplinary area of study which encompasses health-care, rehabilitation, psychosocial, educational, and biotechnology specialties and involves biological, social, and behavioral effects of intervention. Consequently, there is a lack of consistency in what has been studied, how the outcomes have been measured, and where these results have been recorded. Naturally, these disparate outcomes data need to be consolidated in such a way that comparison of treatments can be made, within and across professional disciplines. In an attempt to facilitate this, the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) is committed to providing critical and useful appraisal of the scientific literature to help clinicians keep abreast in their own as well as other relevant disciplines1. The Academy has explored several classification systems to consolidate and interpret data, and has established a two-part conceptual framework (1) to aggregate treatment outcomes and construct evidence tables based on a model of disablement which classifies treatment outcomes by the dimension in which they have an effect; and (2) to determine the degree of confidence that can be placed in the scientific evidence available in support of an intervention.

Effects of gastrostomy feeding in children with cerebral palsy: an AACPDM evidence report.

The objective of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) evidence reports is to provide the biomedical research and clinical practice communities with the current state of evidence about various interventions for the management of developmental disabilities. The AACPDM evidence reports aggregate all that has been published about outcomes of an intervention for a medical condition, gauge the credibility (i.e. strength of the internal validity) of that evidence, and identify gaps in our scientific knowledge. Methodology for developing and procedures for approving these systematic reviews can be found on the internet at www.aacpdm.org in the AACPDM Database of Evidence Reports, which contains initial and updated reports.

Evidence for outcomes of motivational rehabilitation interventions for children and adolescents with cerebral palsy: an American Academy for Cerebral Palsy and Developmental Medicine systematic review

This study reviewed evidence regarding the effect of motivational rehabilitation interventions on outcomes in children with cerebral palsy. Six databases were searched for literature published up to May 2012. Included studies measured the purported motivating effects of motor‐based rehabilitation interventions and the measured impact on outcomes. The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) systematic review methodology was used as a framework. Eight studies evaluated outcomes of studies using virtual reality interventions and one in a functional therapy context. Conflicting evidence from three (level II and level III) studies exists about the impact of these motivating interventions on motor outcomes measured in body functions. No statistical evidence regarding activity and participation outcomes exists. A single level II study found no significant difference in participants’ motivation between motivational and conventional interventions. This review revealed a paucity of research on the effects of motivational interventions. Weaknesses include a lack of consistency in the examination of motivational interventions, limited use of definitions or theories to ground the concept of motivation, and reliance on non‐validated methodological tools. This body of evidence would be strengthened by the use and development of robust outcome measures of motivation.

Interrater reliability and convergent validity of the American Academy for Cerebral Palsy and Developmental Medicine methodology for conducting systematic reviews

Aim  The aim of this study was to evaluate the interrater reliability and convergent validity of the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) methodology for conducting systematic reviews (group design studies).

Measuring participation for children with mobility limitations: a modified Delphi survey for those who use power mobility.

The study by Field et al. 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.