New Insights: Improving Function, Independence and Quality of Life of Individuals with Cerebral Palsy
Experts from across the world share new research and highlight developments in caring for individuals with cerebral palsy in the Journal of Pediatric Rehabilitation Medicine
August 22, 2019
Amsterdam, NL – Cerebral palsy (CP) is one of the most common movement disorders in children. A growing number of caregivers worldwide are caring for children, adolescents and adults with child-onset CP.
In this collection of articles in the Journal of Pediatric Rehabilitation Medicine, experts from different disciplines share their experience and summarize new research directed at maintaining and improving function, independence and quality of life in individuals with CP.
This special issue, guest-edited Deborah Gaebler-Spira, MD, Director, Cerebral Palsy Program, Shirley Ryan AbilityLab and Professor of Physical Medicine and Rehabilitation and Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, and Michael M. Green, DO, Associate Professor of Physical Medicine and Rehabilitation, School of Medicine, University of Utah, Salt Lake City, UT, highlights the issues faced by individuals with CP and their carers and brings together new knowledge for the care of children and adults.
CP occurs in about 1.5 to more than 4 per 1,000 live births and continues into adulthood, requiring ongoing rehabilitation. Symptoms include poor coordination, stiff muscles, weak muscles, and there may be problems with vision, hearing, swallowing, speaking, bowel and bladder, and sensation. Children are also at risk of malnutrition due to feeding problems that are common in CP. There is no cure, but supportive treatments, medications and surgery may help. Children with CP may live a full life, depending on the severity.
This collection of articles taps into the expertise of an international group of scientists and discusses multiple aspects of caring for children and adults with CP. The editors hope to promote multidisciplinary thinking and collaboration to improve outcomes.
The articles in this issue cover topics such as:
- How to improve scoliosis care
- Realistic goal setting
- Home exercise programs to improve walking ability in children with diplegia
- How to improve walking speed in adults with CP
- Prevalence and goal attainment with spinal orthoses for children
- Efficacy of prefabricated carbon-composite ankle foot orthoses
- Improving postural symmetry in children with hemiplegia
- Safety of intramuscular injections in children with CP
- Nutritional care
- Classification system for assessing eating and drinking ability
“Children with CP and their families have always been a significant part of the scope of the Journal,” explained Dr. Green. “They are frequently seen in trans-multi-interdisciplinary settings with pediatric rehabilitation medicine playing a significant role in their care, for example, spasticity management. The practice of spasticity management continues into adulthood as do other functional interventions.”
Caption: This special issue reflects the important role that pediatric rehabilitation medicine (PRM) plays 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.
“We in pediatric rehabilitation medicine have a unique understanding and are in an important position to bridge the lifespan gap that exists in other medical communities,” added Dr. Gaebler-Spira. “Our training exposes all of us to adults with disability. Faculty enthusiastically engage with all pediatric rehabilitation medicine 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 pediatric rehabilitation providers to consider the needs of adults with CP and continue to work with adults to maintain function and independence.”
Recognizing that there is no cure for CP, childhood disability is now an applied science that focuses on function, family, fun, future, fitness and friends. The goal is to increase functionality, improve capabilities and sustain health with respect to locomotion, cognitive development, social interaction and independence. Symptomatic treatment programs involve physical and behavioral therapy, pharmacologic and surgical treatments, mechanical aids and management of associated medical conditions. The creation of subspecialties such as pediatric rehabilitation medicine and neuromuscular medicine now provide specific pathways for training. There is also a clear need among healthcare providers for explicit and clear agreements on how to measure and provide nutritional care for children with CP.
“The ultimate treatment goal is to improve activity, participation and quality of life,” concluded the editors. “The challenge ahead is to get all of us working together to improve the lives of the individuals we serve.”
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NOTES FOR EDITORS
Guest Editors: Deborah Gaebler-Spira, MD, and Michael M. Green, DO, Journal of Pediatric Rehabilitation Medicine, Volume 12, Issue 2 (August 2019) published online at https://content.iospress.com/journals/journal-of-pediatric-rehabilitation-medicine/12/2. The following articles are openly available:
“It all started with a clubfoot: Beliefs surrounding cerebral palsy throughout history,” by Kristina M. Stang, Nicholas E. King and Deborah Gaebler-Spira
“Passive range of motion changes in young children with spastic diplegia. A study during the initial stages of independent walking,” by Rigas Dimakopoulos, George Syrogiannopoulos, Sotirios Youroukos, Zoe Dailiana, and Arietta Spinou
“Structured home-based exercise program for improving walking ability in ambulant children with cerebral palsy,” by Aishah Ahmad Fauzi, Masyitah Mohammad Khayat, Sakinah Sabirin, Norazah Haron, Mohd Nahar Azmi Mohamed, and Glen M. Davis
“Prevalence and goal attainment with spinal orthoses for children with cerebral palsy,” by Katina Pettersson and Elisabet Rodby-Bousquet
Full text of the articles is available to journalists upon request. Contact Diana Murray, IOS Press, at +1 718-640-5678 or firstname.lastname@example.org for additional information. Journalists who wish to interview the guest editors or authors should contact Deborah Gaebler-Spira at email@example.com, Michael M. Green at Mike.Green@hsc.utah.edu, or Meg Washburn at +1 312-238-6016; firstname.lastname@example.org.
ABOUT THE JOURNAL OF PEDIATRIC REHABILITATION MEDICINE
Editor-in-Chief: Elaine L. Pico, MD, FAAP, FAAPM & R, UCSF Benioff Children’s Hospital Oakland
The Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach is an international journal designed to parallel the multidisciplinary team approach of caring for a child with an acute or chronic disease. Issues are primarily themed and broad in scope including but not limited to cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, amputation, muscular dystrophies of all types, stroke, cancer, cognitive impairment, developmental delays, and others.
ABOUT IOS PRESS
IOS Press is headquartered in Amsterdam with satellite offices in the USA, Germany, India and China and serves the information needs of scientific and medical communities worldwide. IOS Press now publishes more than 80 international peer-reviewed journals and about 75 book titles each year on subjects ranging from computer science, artificial intelligence, and engineering to medicine, neuroscience, and cancer research. www.iospress.com