How rehabilitation impacts research and care of patients with cerebral palsy

August 03, 2020

Experts document progress made through rehabilitation interventions that improves quality of life for patients with cerebral palsy, in this special issue of the Journal of Pediatric Rehabilitation Medicine

Amsterdam, NL, August 3, 2020 - Cerebral palsy (CP) is one of the most common developmental movement disorders in children. It is associated with complex healthcare needs and for some a shortened life expectancy depending on the severity of the disorder and co-existing medical conditions. In this special issue of the Journal of Pediatric Rehabilitation Medicine, experts present advancements made by rehabilitation medicine in the care of patients with CP, improving quality of life and research.

This special issue is guest-edited by two of the leading experts in the field, Deborah Gaebler-Spira, MD, Feinberg Northwestern University School of Medicine and Shirley Ryan Ability Lab/Lurie Children's Hospital, Chicago, IL, USA; and Michael M. Green, DO, Clinical Pediatric Rehabilitation Medicine Attending at Primary Children's Hospital, University of Utah, Salt Lake City, UT, USA.

"One of our most significant challenges is understanding the effect of all of our interventions on children through the lifespan," commented Dr. Gaebler-Spira and Dr. Green. "This second CP-focused special Issue of the journal continues to explore the impact of rehabilitation medicine on the care and research for those with CP."

An important contribution to the issue showcases the use of bibliometrics, which has considerable potential for healthcare scientists and practitioners to discover new information about academic trends, pharmacotherapy, disease, and broader health sciences trends. Margret Turk, MD, the most recent Gabriella E. Molnar-Swafford Lifetime Achievement Award recipient, and co-authors demonstrate the expanding literature emphasizing function and quality of life for persons with CP including performance, aging, and health, compared to earlier studies when diagnostic feature and brain pathology dominated research. Their findings highlight the transition from diagnosis and identification to management of specific conditions and providing guidance for the continuum of needs that patients with CP experience over the course of a lifetime.

This issue introduces "Needle Tips," devoted to the art, science, and practice of injecting neurolytics such as botulinum toxin and phenol in in children with CP. "It was conceived as a unique forum in which the active community of injectors would express some of the daily problems, challenges, and nuances that are the bread and butter of our daily practice," Dr Gaebler-Spira explained.

Botulinum toxin injections now have a "green light" for managing spasticity in children with a variety of neuromuscular conditions. Current randomized clinical trials utilizing botulinum toxin are on children with CP, which has current FDA approval for lower and upper limb injections. However, questions remain. To address these issues injectors from the pediatric rehabilitation community present their views and rationale on current use of botulinum toxin, adverse events, dilution, and diagnoses.

The section "Human-TIES come first" is a chance to introduce a piece of art, music, book, or in this case a film, to readers that will enhance understanding and create a human view of the experience of living with a disability. This issue includes a review of the documentary "Crip Camp," whose executive producers were Barack and Michelle Obama. It shows footage and interviews from Camp Jened, a summer camp for people with disabilities. The reviewer points out that terms such as "crip," "cripple," and "gimp" have been used by people with disabilities as terms of empowerment, taking formerly insulting terms and repurposing them into words of advocacy. "We consider this a must see for the field," said Dr. Green.

Other issue highlights include:"In the midst of the coronavirus pandemic Dr. Gaebler-Spira, and Dr. Green worked around the clock with specialists across the country and the world to culminate in a very special JPRM cerebral palsy issue. It was an absolute pleasure and an honor to work with our special guest editors," added Editor-in-Chief, Elaine Pico, MD, UCSF Benioff Children's Hospital, Oakland, CA, USA.

CP occurs in about 1.5 to more than 4 per 1,000 live births and individuals with CP benefit from ongoing rehabilitation throughout childhood and into adulthood. The symptoms of CP vary over the lifespan. Commonly the first symptoms are gross motor delay due to abnormal muscle tone and decreased motor control and coordination. As children age, the muscles become stiff and weak with subsequent orthopedic problems. Other systems affected may include vision, hearing, swallowing, speaking, bowel and bladder, and sensation. Although there is no cure, management and treatments such as medications and surgery can ameliorate complications and assist people with CP to live a full life.

IOS Press

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