A view of the blue sky and treetops from the ground, with the leaves turning from green to the yellow and orange hues of autumn

Exercise and physical activity in spastic diplegia – part 1

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

The natural beauty surrounding us, helps during another lockdown here in Ireland. COVID case numbers have recently increased thus further restrictions were necessary.

Since staring to write for CPRN, I have addressed Selective Dorsal Rhizotomy in adulthood, then a series on the definition, causes & risk factors, and prevalence of cerebral palsy. Over the next few posts I will write about exercise and physical activity in cerebral palsy (CP).

Exercise and physical activity is important for everyone. The goal of exercise and physical activity for the person with spastic diplegia is the same as for their able-bodied peers–having a physical disability does not confer any exemption from needing to exercise and stay physically active.

Just so there is no ambiguity, let us clarify what is meant by these terms:
➡ Exercise is planned, structured, repetitive, and intentional movement intended to improve or maintain physical fitness [1]. Exercise is a subtype of physical activity. Examples of exercise include running, cycling, or attending a gym class.
➡ Physical activity is movement carried out by the skeletal muscles that requires energy expenditure, thus any movement is physical activity [1]. Physical activity varies from light to moderate to vigorous. Examples of each include:
– Light physical activity: slow walking
– Moderate physical activity: brisk walking, jogging, climbing stairs
– Vigorous physical activity: fast running, fast cycling

It follows that energy expenditure is lowest while doing light physical activity and highest while doing vigorous physical activity. Recent advancements in wearable monitoring devices allow better measurement of physical activity levels. (I like being able to track my daily activity level.)

Do children and adolescents with spastic diplegia take part in enough physical activity?
No. Studies have shown that children with CP walk significantly less [2] and spend more time being sedentary [3] than typically developing children. A further study [4] found that children aged 3 to 12 showed a decrease in amount and intensity of physical activity with increasing GMFCS level and increasing age.

Does this reduced physical activity have health consequences?
Yes. Reduced physical activity was associated with higher energy cost of walking in adolescents with mild spastic CP [5] and elevated blood pressure in children and adolescents with mild or moderate spastic CP [6].

Do studies show exercise and physical activity is beneficial for children and adolescents with CP?
Again, yes. Studies have found benefits across a range of measures, including fitness, body composition, quality of life, and happiness [7–9]. A physical therapy research summit sponsored by the American Physical Therapy Association emphasized the need to promote and maintain physical fitness in children with CP to improve health, reduce secondary conditions, and enhance quality of life [10].

Over the next posts I’ll write about the importance of exercise and physical activity in adulthood, exercise and physical activity recommendations for people with CP, and more.

References

A white speech bubble against a lime green background with the words ‘Let’s talk about CP’.

Surgical Spasticity Treatments in Children who are not Ambulatory

Surgical Spasticity Treatments in Children who  are not Ambulatory

Sruthi Thomas, MD, PhD Pediatric Physical Medicine and Rehabilitation

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on surgical spasticity treatments for children who are not ambulatory on Monday, October 26 at 8 pm ET. Sruthi Thomas, MD, PhD, a pediatric physical medicine and rehabilitation physician from Texas Children’s Hospital, will share her formative work in this topic identified by Research CP. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Thomas has initiated a number of lines of study on spasticity management for cerebral palsy (CP) to build preliminary data in support of a large multi-center comparative effectiveness research (CER) grant application. Spasticity interventions have been studied more in children with CP who are ambulatory so a CER study that helps determine which interventions work best in children who are not ambulatory is needed. Parents are increasingly faced with very difficult choices between surgical spasticity interventions to address pain, care and other activities for these children.  In this webinar, Dr. Thomas will talk about the state of the evidence, the importance of research and the studies she is planning to answer critical questions for this population.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

A preview image of Dr. Michael Kruer leading to blog post ‘Genes and Cerebral Palsy’

Genes and Cerebral Palsy

Michael Kruer, MD
Michael Kruer, MD

The Cerebral Palsy Research Network (CPRN) researcher Michael Kruer MD, a movement disorders pediatric neurologist and geneticist at the University of Arizona, was published last month in Nature Genetics for his work on the discovery of genes that may cause cerebral palsy (CP) by impairing the wiring of brain signals during early development.  These findings support the need for broader research being conducted by Dr. Kruer and CPRN. The early study of these genes led to treatment changes in some patients.

The published paper was based on genetic sequencing from 250 parent and child combinations (trios).  The CPRN study, led by Dr. Kruer and funding by the National Institutes of Health, will allow the analysis of a rich set of patient characteristics captured in the CPRN CP Registry in conjunction with genomic analyses for 500 additional trios. The findings from this study hold the promise to improve diagnoses and treatments for children with CP. Identifying genetic causes is key to providing personalized or precision medicine which will help tailor interventions for people with CP to enable more effective treatments.

When asked to explain the significance of these findings, Dr. Kruer said, “this study is the first firm statistical and laboratory evidence that a substantial proportion of CP cases are caused by genetic mutations; findings indicate CP genes don’t map to clotting and inflammation but more to early brain development; although brain wiring is complex, findings suggest new targeted therapies for CP are possible (rather than focusing simply on reducing symptoms as is current paradigm); early experience indicates that for some participants, genetic findings directly changed their clinical management (avoiding complication, reaching for best treatment first, or even prompting a completely new treatment that would not otherwise have been tried).”

 

 

We look forward to beginning to enroll patients from the CPRN CP Registry into this study in the coming months.

 

Seen from behind, the ‘Waiting On Shore’ monument, depicting a woman with reaching arms by the shore in Rosses Point, Ireland.

Prevalence of Cerebral Palsy

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

The sculpture above “Waiting on shore” is located in our village (Rosses Point) on the Atlantic coast. It reflects the age-old anguish of seafaring people who watched and waited for the safe return of loved ones. It’s a gentle reminder to future generations to remember a proud history of courage and survival, of loss and grief.

In the last two posts, I addressed causes of and risk factors for CP. This week I’ll cover the prevalence of CP. The prevalence of a condition is how many people in a defined population have the condition at a specific point in time. Prevalence rates can vary geographically. A 2013 worldwide review found that the overall prevalence of CP was 2.11 per 1,000 live births*1. A recent (2019) study, however, reported that the birth prevalence** of CP declined across Australian states between 1995 and 20092. The percentage of children with CP whose disability was moderate to severe also decreased. A 2020 report on collaborative research between the European and Australian Surveillance Networks found similar decreasing prevalence of CP in Europe3. This is encouraging.

Some further points to note:

  • CP is the most common cause of physical disability in children4.
  • Males are at higher risk of CP than females. Data from Australia found that 57 percent of those with CP were male, while males represented 51 percent of all births5. This may be because males have certain nerve cell vulnerabilities that may result in CP6. It is noteworthy that there are frequently more male than female participants in CP studies.
  • Relative to its prevalence and its impact on the life span of those with the condition, funding for CP research is very low. The NIH reports research funding by condition. Although the reported prevalence of CP is twice as high as that of Down syndrome (0.2 percent versus 0.1 percent), funding allocated to CP research in 2019 ($28 million) was significantly lower than that of Down syndrome research ($86 million)7. Funding estimates for 2020 and 2021 are $29 and $26 million, respectively, for CP and $113 and $105 million for Down syndrome.
  • An analysis of National Institutes of Health (NIH) funding for CP research from 2001 to 2013 found that only 4 percent went toward studies of CP in adulthood8. Thus research on CP in adulthood receives only a small percentage of an already small budget.

*Births up to 2004.
**This was formerly referred to as “incidence,” but the term “birth prevalence” is now felt to be more accurate2.

1Oskoui M, Coutinho F, Dykeman J, Jetté N, Pringsheim T (2013) An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol 55: 509–519.
2Galea C, Mcintyre S, Smithers-Sheedy H, et al. (2019) Cerebral palsy trends in Australia (1995–2009): a population-based observational study. Dev Med Child Neurol 61: 186–193.
3Sellier E, McIntyre S, Smithers-Sheedy H, Platt MJ, SCPE and ACPR Groups (2020) European and Australian Cerebral Palsy Surveillance Networks Working Together for Collaborative Research. Neuropediatrics 51(2): 105-112.
4Graham HK, Rosenbaum P, Paneth N, et al. (2016) Cerebral palsy. Nat Rev Dis Primers 2: 1–24.
5Australian Cerebral Palsy Register (ACPR) Group (2013) Australian Cerebral Palsy Register Report 2013. [pdf] Available at: .
6Graham HK, Thomason P, Novacheck TF (2014) Cerebral palsy. In: Weinstein SL, Flynn JM, editors, Lovell and Winter’s Pediatric Orthopedics, Level 1 and 2. Philadelphia: Lippincott Williams & Wilkins, pp 484–554.
7National Institutes of Health (NIH) (2020) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). [online] Available at: .
8Wu YW, Mehravari AS, Numis AL, Gross P (2015) Cerebral palsy research funding from the National Institutes of Health, 2001 to 2013. Dev Med Child Neurol 57: 936–941.

A headshot of a smiling man with short salt and pepper hair and a beard is wearing glasses, a black suit, and a light blue tie.

CPRN Investigator Funded for Feasibility Study

CPRN Investigator Funded for Feasibility Study

Ed Hurvitz, MD, Chair of Physical Medicine and Rehabilitation, University of Michigan

Edward A. Hurvitz MD of Michigan Medicine, University of Michigan and Cerebral Palsy Research Network (CPRN) Executive Committee, was awarded the Foundation for Physical Medicine & Rehabilitation Gabriella Molnar grant for a project entitled “Feasibility of Adding Grip Strength Measures to Body Composition Assessments in Individuals with Cerebral Palsy.”  The aim of the project is to test the feasibility of adding measures such as waist-hip circumference, skinfold measures, and grip strength to a regular clinic appointment for individuals with cerebral palsy (CP) from age 8 through adulthood, and then potentially as data points in the CPRN CP Registry.  The Michigan Adults with Pediatric Onset Disabilities research group has published extensively on chronic disease risk in adults with CP.  Body composition and grip strength are well documented indicators for risk of morbidity and mortality in typical developing populations, and obesity has been associated with risk of multi-morbidity in adults with CP, including young adults between ages 18-40.  The study will also include a history of chronic disease with an exploratory aim to correlate body composition and hand grip findings to history. 

CPRN congratulates Dr. Hurvitz and his colleagues for their success in funding this research which was originally approved as a concept for CPRN in April 2019. This study addresses top priorities from Research CP, including the study of the effects of aging with cerebral palsy as well as laying the groundwork to do studies of exercise strategies to promote better health outcomes.  Co-investigators on the study include Drs. Mark Peterson, Dan Whitney, Heidi Haapala, Mary Schmidt, Angeline Bowman and Jessica Pruente. The funding amount is $10,000 dollars, to be used for measurement equipment and research assistance.  The start date is December 1, and the study is planned for 18 months.

The World Cerebral Palsy Day logo

World CP Day — Make Your Mark

World Cerebral Palsy Day

World Cerebral Palsy Day

 

 

 

 

 

 

The Cerebral Palsy Research Network (CPRN) is proud to participate in this year’s World CP Day.  We at CPRN, with our partner CP NOW, are enabling members of the cerebral palsy (CP) community to “Make Your Mark” through participation in CP research.  A little less than a year ago we launched MyCP.org and invited the extended CP community to make a difference by contributing to research – setting research direction, contributing your experience and interacting with clinician researchers committed to improving outcomes for people with CP.  MyCP is now over 1,000 people strong providing news, discussions and opportunities to participate in research from your phone or computer.  This past March we launched the MyCP webinar series so members of the community could learn about CPRN research initiatives directly from CPRN researchers.  Our research reaches from diagnosis into retirement so our community of people with CP, parents, advocates, clinicians and researchers are working to improve quality of life throughout the lifespan.  Join MyCP and tell us how you have made your mark!