Changing the model: a call for a re‐examination of intervention approaches and translational research in children with developmental disabilities

摘要

Current services for children with disabilities are provided based largely on traditional approaches that lack evidence of efficacy. Clinicians and families are, therefore, left with few evidence-based alternatives. For example, neurodevelopmental treatment, a major treatment approach for children with cerebral palsy (CP), has been found to be of questionable value.1 Fortunately, however, the situation is changing. Neuroscientific research has begun to elucidate the fundamentals of brain plasticity, including how the developing brain interacts with the social environment2 and how the brain learns and recovers after insult. One such fundamental is that optimal brain plasticity occurs when interventions incorporate the following three essential elements: (1) intensive task repetition, (2) progressive challenges to the learner with increasing difficulty, and (3) the presence of motivators and rewards.3 Another fundamental, subsumed under the rubric term ‘motor learning’, is that training be task-oriented (and as such, motivating). Thus, training must involve active participation and skill acquisition of a functional goal. Finally, the practice must be structured. Concurrently, the development of valid and reliable instruments, together with focus on function by the adoption of the ICF, has improved our ability to measure change. All the above have contributed to T1 translational research, i.e. the application of basic science to clinical models.4 In such research, interventions developed for individuals with a disability demonstrated a significant improvement in function. Studies based on motor learning have been particularly exciting, demonstrating change in neural representations and function after intervention.5 Such studies could provide key insights into neuropathophysiology, thus enabling development of even more effective methods of treatment for children with disabilities. Much of the initial intervention work that incorporated research based on brain plasticity has come from adult stroke literature, where multiple studies have demonstrated the efficacy of constraint-induced movement therapy (CIMT), treadmill training, robotic training, neuromuscular stimulation and, more recently, training in virtual environments. Recent studies have extended these interventions to the cognitive domain.6 Studies have followed, with demonstrated efficacy for those with CP, in pediatric CIMT,7 and bimanual training,8 and for those with Down syndrome in treadmill training.9 Similarly, striking advances have been made in the treatment of children with autism using early, intensive behavioral intervention with good evidence supporting its efficacy.10 Common to these interventions is the fact that that they are intensive in application, substantially beyond usual and customary care, structured, and task-oriented. As such, it is quite notable how slowly these interventions are being introduced into the community. An example of this is CIMT, for which evidence is approaching Level I, yet currently is not widely available clinically, even in a large metropolitan area such as New York City that has a comprehensive research center. Is the delay in implementing novel intervention approaches a result of early skepticism, resistance to abandoning traditional practices, funding limitations, or lack of awareness of the emerging science? Recent evidence suggests, at least in part, the latter.11 Clinicians treating children with disabilities should take note. Provision of ongoing, once or twice-weekly therapy that lacks functional goals and rigorous measures of change should be strongly questioned. Conversely, in a recent study, traditional and conductive education therapies for children with CP were provided with high intensity yet were not found to be efficacious.12 Therefore, intensive application of a therapy that lacks a task-oriented approach should also be reconsidered. Thus it appears that treatment intensity is necessary but not sufficient. Impor