Motor function after dorsal rhizotomy

Josenby et al.1 have set a standard for longitudinal studies of interventions intended to improve the capacity and performance of children with cerebral palsy when they reach adulthood. The authors have carefully followed their cohort for 10 years and have used the International Classification of Functioning, Disability and Health (ICF) framework to guide selection of outcome measures. Valid and reliable measures of structure, function, and activity and participation are included. The Gross Motor Function Classification System (GMFCS) makes it easy for the reader to understand the abilities of the sample. The comprehensive treatment of mobility is reported so the reader knows what other modalities (physiotherapy, orthopaedic surgery, etc.) have been brought to bear. The results show that spasticity is permanently reduced and function is modestly improved. No patient improved GMFCS level during the 10 years. The data are presented in a visual manner that makes it easy to appreciate both the group results and the variation among individual patients. The authors emphasize that the children received dorsal rhizotomy in the context of long-term follow-up and continued treatment. They allude to the use of other modalities together with a falling incidence of spastic diplegia in their region (if only the latter were true in more places!) to account for a relatively small number of rhizotomies in their subsequent practice. All centers need to emulate this work. It is unlikely that additional proposals for randomized clinical trials (RCTs) of dorsal rhizotomy, intrathecal baclofen pumps, orthopaedic surgeries, or other existing treatments would succeed because of resistance to randomization, cost, and the low priority generally accorded developmental disabilities by major funding agencies. Regardless, once short-term safety and efficacy of an intervention are established, long-term functional outcomes are most important. RCTs are inherently short-term and are focused on a single intervention. Given the heterogeneity of cerebral palsy, it may make sense to prioritize studies of the overall patterns of care rather than individual interventions. Josenby et al. provide that context while focusing on rhizotomy. Multicenter studies using common definitions and outcome measures will be more powerful. Participating centers will have a better basis for evaluating results than this study which used the Ontario Motor Growth cohort as a comparison.2 If large numbers of children with cerebral palsy are registered in long-term prospective cohort studies using a manageable number of common, clinically-useful outcome measures of structure, function, activity and participation, it will become clear, even over a short 5-year initial grant period, whether some interventions are beneficial or harmful. Adequately powered sample sizes of sufficiently homogeneous participants could be readily recruited for RCTs focused on critical new interventions. Over a decade, the incredible variability of current practice would coalesce around standardized, more effective team care. Children might even start improving GMFCS level. Most of this should sound familiar. The successful work of the CanChild group,2 the North American Growth in Cerebral Palsy Project,3 the International Workshop on Definition and Classification of Cerebral Palsy,4 and the Task Force on Childhood Motor Disorders5 are in the literature. The Surveillance of Cerebral Palsy in Europe project is ongoing.6 Our Australian colleagues also know how to improve practice.7 The Shrine system, Gillette Children’s Hospital, and many other orthopaedic centers are hard at work. There are many more skilled investigators in the field than was the case two decades ago. It remains to disseminate recent advances in definition and measurement widely and to have a positive impact on public policy to enhance funding for research and clinical services. If most centers could emulate Josenby et al. and coalesce into ongoing multicenter networks allied with families and advocates, the field of care for cerebral palsy and other neurodevelopmental disabilities can achieve successes on the order of those achieved in childhood cancer and cystic fibrosis. Our colleagues who focus on autism are showing the way and the rest of us can set a higher bar on behalf of the children we serve.

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