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Cerebral Palsy

This is a golden moment for Pediatric Rehabilitation Medicine (PRM) in the care of children and adults with cerebral palsy (CP). There are important forces that propel PRM and Physical Medicine and Rehabilitation (PMR) forward in clinical care, transition medicine, and research related to caring for people with CP throughout the lifespan. We at the journal of PRM want to lead the way in disseminating such resources, in order to further the care of people with CP.

Children with CP and their families have always been a significant part of the practice of PRM. Children with CP are frequently seen in trans-multi-interdisciplinary settings with PRM playing a significant role in their care (e.g., spasticity management). The practice of spasticity management continues into adulthood as do other functional interventions. We in PRM have a unique understanding and are in an important position to bridge the lifespan gap that exists in other medical communities. Our training in PMR exposes all of us to adults with disability. PRM faculty enthusiastically engage with all PMR residents by teaching and expanding the clinical care for children with CP who are aging into adulthood. Many of us in academic programs have taught the next generation of PMR providers to consider the needs of adults with CP and continue to work with adults to maintain function and independence [1, 2].

In November of 2014, the NIH conference “State of the Science and Treatment Decisions in Cerebral Palsy [6]” brought over 100 scientists, clinicians, advocates, and other stakeholders in CP together to discuss therapeutic interventions, research methodologies, and the needs of patients and families. One of the major goals of this conference was to identify gaps in the evidence for therapeutics and interventions and to create potential strategies to address those gaps. A strategic plan was crafted to address basic and translational research, clinical research, and work-force development [7].

The recent initiation of the CP Registry Network (CPRN), an Electronic Medical Record database network of providers, harnesses the power of stakeholders together with professionals to work towards a multisite inclusive CP research agenda that emphasizes lifespan concerns [3]. Common data elements (CDEs) have been created for CP that can be integrated for both clinical and research endeavors [4]. The emergence of the CPRN and the CDEs were both tangible results from the NIH State of the Science conference. PRM leadership has been engaged in and critical to the success of the NIH State of the Science, CPRN, and the CDE initiative. In addition, the International Classification of Functioning (ICF), which informs PRM and PMR thinking, was universally promoted at the NIH State of the Science meeting and is consistent with redirecting the goals of patient management away from body structure and towards a focus on activities and participation; from acute to chronic care concerns [5].

We play an important role in managing children and adults with CP, including providing early diagnoses, realistic goal setting, and complex comprehensive patient management throughout childhood and into adulthood. PRM is a value-adding partner in the clinical lives of people with CP.

The Journal of PRM will strive to promote and provide a home for publications that are of interest to all providers who care for children with disabilities. This issue represents a CP theme-oriented approach which encompasses input from many disciplines. We hope to promote publications that improve outcomes for individuals with CP through critical thinking and collaboration. There will be a yearly publication on Cerebral Palsy for the Journal of Pediatric Rehabilitation Medicine (JPRM). We will be sending out a call for publications soon for next year’s publication. Please contact us with your suggestions and ideas to make the JPRM CP issue a robust part of your education and practice. We are proud of our past and recent contributions to the field of CP, but most importantly we look forward to the future of PRM scholarship and hope to stimulate this through the JPRM.

References

[1] 

Paulson A, Vargus-Adams J. Overview of four functional classification systems commonly used in cerebral palsy. Children (Basel, Switzerland) 2017; 4.

[2] 

Brunton L. The gross motor function classification system: clinicians need to spread the word. Dev Med Child Neurol 2018; 60: 1197-8.

[3] 

Gross PH, Bailes AF, Horn SD, et al. Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative. Dev Med Child Neurol 2018; 60: 1278-84.

[4] 

Schiariti V, Fowler E, Brandenburg JE, et al. A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 10. recommendations. Dev Med Child Neurol 2018; 60: 976-86.

[5] 

Schiariti V, Tatla S, Sauve K, O’Donnell M. Toolbox of multiple-item measures aligning with the ICF Core Sets for children and youth with cerebral palsy. Eur J Paediatr Neurol 2017; 21: 252-63.

[6] 

https://www.ninds.nih.gov/News-Events/Events-Proceedings/Workshop-Conference-Proceedings/Treatment-Decisions-Cerebral-Palsy

[7] 

https://www.ninds.nih.gov/sites/default/files/NINDS_NICHD_2017_StrategicPlanCerebralPalsyResearch_508C.pdf