Special issue aims to deepen the conversation around cerebral palsy

Although cerebral palsy (CP) is the most common childhood-onset disability, there are very few evidence-based clinical practice guidelines or recommendations on how to treat and manage this condition. A special issue of the Journal of Pediatric Rehabilitation Medicine, guest-edited by Rachel Byrne, Deborah Gaebler-Spira, Michael Green, and Heakyung Kim, in partnership with the Cerebral Palsy Foundation and published by IOS Press, assesses the state of the art of the treatment of CP.

Co-guest editor Michael Green, DO, Clinical Pediatric Rehabilitation Medicine Attending at Primary Children’s Hospital, University of Utah Health, explains, “The goal of this special issue is to deepen the conversation around CP and to improve research and its translation into evidence-based practice in order to improve the care and quality of life for people living with CP.”

CP is defined as a disorder of movement and posture due to a non-progressive lesion to an immature brain. As such, children with CP may deal with movement problems that are commonly related to spasticity. Because a standardized clinical pathway for managing spasticity does not exist to guide care providers toward optimal care for people with CP, there is significant variability in the care provided to these individuals.

There is no single medication, intervention, or surgery that manages spasticity perfectly throughout the lifespan. Also, existing surgical and pharmacological treatments come with their own side effects and adverse events, which can sometimes compromise function. These challenges can be exacerbated in child-onset conditions, making spasticity management particularly difficult in individuals with CP.”

Deborah Gaebler-Spira, MD, Co-Guest Editor, Feinberg Northwestern University School of Medicine and Shirley Ryan Ability Lab/Lurie Children’s Hospital, Chicago

Co-guest editor Heakyung Kim, MD, Department of Physical Medicine & Rehabilitation, UT Southwestern, Dallas, notes, “Given the lack of systematically collected data, it is extremely important for clinicians to consider experts’ experiences and rationales regarding enteral baclofen use when selecting their interventions. For this special issue, we invited three experts on spasticity management to share their experiences and rationales and present a balanced view: one to discuss the mechanisms and methods of baclofen as a treatment of spasticity, a second to discuss the cons of this medication, and a third to share the pros of using baclofen as a treatment for spasticity.”

Featured articles

In “Is baclofen the least worst option for spasticity management in children?” Joline Brandenburg, MD, Department of Physical Medicine and Rehabilitation & Department of Pediatric and Adolescent Medicine, Mayo Clinic College of Medicine, assesses the use of baclofen for spasticity management in children and discusses approaches to using other medications as first-line treatment options.

“In my practice, other medications for spasticity management are often used prior to initiating baclofen. In this article, I discuss the approaches I take in medication selection that incorporate spasticity severity, patient goals, and medication side effect profiles,” Dr. Brandenburg explains.

The article “Spasticity-related pain in children/adolescents with cerebral palsy. Part 2: IncobotulinumtoxinA efficacy results from a pooled analysis” indicates that injections with incobotulinumtoxinA could bring considerable benefit to children/adolescents with spasticity by reducing spasticity-related pain (SRP).

According to lead investigator Florian Heinen, MD, Division of Paediatric Neurology and Developmental Medicine and LMU Center for Children with Medical Complexity, Dr. von Hauner Children’s Hospital, Ludwig Maximilian University of Munich: “Botulinum neurotoxinA (BoNT-A) is recommended and its use established to relieve CP-related spasticity in children, and it has demonstrated efficacy for improving muscle tone and helping patients achieve individualized goals of motor function. There is less evidence available regarding the use of BoNT-A formulations for the control of SRP, especially in children/adolescents. While the results of our analysis are promising for treatment of SRP, further research is warranted.”

In “Reliability and discriminant validity of the quantitative timed up and go in typically developing children and children with cerebral palsy GMFCS levels I-II,” researchers examine the reliability and discriminant validity of the Quantitative Timed up and Go (QTUG) wearable sensor technology in typically developing children and children with CP.

Lead investigator Andrea Fergus, PhD, DPT/TDPT, Shenandoah University Division of Physical Therapy, points out that “the deficits in motor performance and functional mobility observed in children with CP, gait disorders specifically, are associated with activity restrictions and lower levels of participation across multiple life domains. The results of our study show that the QTUG is a clinically feasible, reliable tool. We provide preliminary evidence that the QTUG can discriminate between children on several of the gait parameters within the TUG.”

In children with CP, neurodevelopmental therapy (NDT) is the most widely used treatment approach aimed at maximizing the child’s potential to improve motor functions while preventing musculoskeletal complications. “Effect of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach for children with cerebral palsy: A randomized controlled trial” details two specific treatment approaches. Gamze Ekici, PhD and Zeynep Kolit, MSc, Department of Occupational Therapy, Faculty of Health Sciences, Hacettepe University, Ankara, set up a randomized trial to investigate the efficacy of NDT with and without the Cognitive Orientation to daily Occupational Performance (CO-OP) approach.

“This study clearly shows that the gains after the treatment increased with the addition of the CO-OP approach in children who take the NDT approach. Thus, the CO-OP approach supports skill acquisition by improving children’s performance levels, which are necessary to perform their daily occupations,” the authors report.

Other articles in this special CP issue cover the following topics:

• The challenge point framework
• Bimanual task practice
• Use of the Computer-Based instrument for Low motor Language Testing in Canada
• Factors associated with intrathecal baclofen pump explants
• Effectiveness of intrathecal morphine following selective dorsal rhizotomy
• Treatment with trihexyphenidyl
• Outpatient hospital utilization after single event multi-level surgery
• Effects of a balance board on the balance parameters in children with spastic CP
• Use of shear wave elastography to analyze the muscle structure
• Vitamin D levels
• Hematological and biochemical parameters
• Use of music
• Obesity
• Burnout among informal caregivers
• Gross Motor Function Classification System levels in a low-resource setting
• Racial disparities
• Classification systems in Japan

JPRM Editor-in-Chief Elaine Pico, MD, UCSF Benioff Children’s Hospital Oakland writes: “We established the annual JPRM CP special issue in 2019, and it has become an important resource nationally and internationally for all team members who participate in the care of those with this condition. Our managing editor Sara Tinsley and I work year-round with our special guest editors, and I am particularly proud of each and every issue. We have treatments for CP but no cures; therefore, all the research we have is focused on better outcomes for individuals with spasticity-related challenges. This special issue contains a large collection of rigorously evaluated research in the field of CP that is a must read for anyone who treats this condition.”

The Journal of Pediatric Rehabilitation Medicine is partnering with the Cerebral Palsy Foundation in its efforts to give stakeholders in the treatment and management of CP the power needed to affect the research process and resulting outcomes.

Rachel Byrne, PT, Executive Director, Cerebral Palsy Foundation, New York City, NY, USA, and co-guest editor of this special issue comments, “We are proud to partner with the Journal of Pediatric Rehabilitation Medicine. Our goal is to work closely with leaders, to develop, share, invest and provide infrastructure to otherwise underfunded areas. The Foundation uses proven models of implementation and developed research agendas to support deep systems change. More than ever, there is an urgent need for dialogue about inclusion of individuals with disabilities in research, medicine and improving healthcare systems. Implementation potential, with translation, education and dissemination will be key to a truly engaged process between stakeholders and researchers.”