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Focus on Diagnosis, Care Coordination, and Training Caregivers to Reduce Cerebral Palsy Disparities, Experts Say

Article In Brief

Social determinants can have a strong impact on a child's risk for cerebral palsy and the condition's severity, an editorial noted. Experts suggest that more prenatal assessments of risk for CP and earlier interventions in the home would help mitigate disparities in care.

The United States health care system should implement strategies to reduce disparities among children with cerebral palsy (CP), according to the authors of a new editorial published on June 25 in the Journal of Pediatric Rehabilitation Medicine.

They noted, for example, that Black children in the US have double the risk for having spastic CP compared with White children, and that children from families with low socioeconomic status are 67 percent more likely to have CP compared with children from families with high socioeconomic status, according to a population-based cohort study published in 2015 in Developmental Medicine & Child Neurology. In addition, the authors cited research showing that CP is more prevalent and severe among children in the US whose mothers have lower educational attainment.

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“If we pay attention to health disparities, we can have much better collaboration between physicians, patients, and families to improve care. That is the art of neurology, this is the art of developmental neuroscience.”—DR. MICHAEL E. MSALL

By analyzing registry and population surveillance data from Australia, Canada, Sweden, the United Kingdom, Ireland, Turkey, and the US, the authors found that social determinants can have a strong impact on a child's risk for CP and the condition's severity.

These factors include the socioeconomic status of a child's family, the neighborhood the child is raised in, the education level of the child's mother, and the child's race or ethnicity, according to the authors.

“If we pay attention to health disparities, we can have much better collaboration between physicians, patients, and families to improve care. That is the art of neurology, this is the art of developmental neuroscience,” said the editorial's lead author Michael E. Msall, MD, professor of pediatrics at the Pritzer School of Medicine at the University of Chicago and co-director of the Kennedy Research Center on Intellectual and Neurodevelopmental Disabilities.

Health providers could reduce the uneven toll of CP by focusing on diagnosing the highest risk patients before age 6 months, assessing children with motor delays, coordinating specialist care, connecting families with services, and teaching parents intervention activities, according to the editorial, Experts interviewed by Neurology Today said they agree with these approaches and emphasized that more attention needs to be paid to preventing CP to begin with.

Surveillance Lacking

The editorial noted that, unlike Australia, Canada, and the Scandinavian countries, the US doesn't have a systemic, nationwide population count of children and adults with CP. The Centers for Disease Control and Prevention estimates that one in 345 children in the US has CP, but this is based on 2010 data from four sites in Alabama, Atlanta, Missouri, and Wisconsin, which are part of the Autism and Developmental Disabilities Monitoring Network.

“There is almost no current information about the epidemiology of cerebral palsy in the United States,” said Maureen Durkin, PhD, DrPH, the Evan and Marion Helfaer Professor of Public Health and chair of the department of population health sciences at the University of Wisconsin School of Medicine and Public Health. Dr. Durkin, whose CP research was cited in the editorial, said she agrees that a national surveillance system that identifies children with CP could give more accurate information on prevalence and outcomes.

Ann C. Tilton, MD, FAAN, professor of clinical neurology at Louisiana State University School of Medicine and chief of the section of child neurology at Children's Hospital New Orleans, said much more prevalence information is known for other conditions, such as Parkinson's disease, than for CP, and agreed that a national surveillance system would be beneficial.

“Things that start getting counted become more important,” Dr. Tilton said.

More funding of research that investigates interventions that benefit children with CP would also improve care, Dr. Msall said.

“Unfortunately, in pediatric populations, some of the management is outside the health care system; children's management of their disability occurs in schools and in after-school community programs,” he said. “In the elderly population, the Medicare program closely monitors inpatient, outpatient, and rehabilitation care outcomes for both quality and quantity. However, in children, there is fragmentation across systems of care between health insurance, educational supports, and community supports. This fragmentation results in partial data and missed opportunities to improve functioning, participation, and well-being over the lifecourse. Children with cerebral palsy become adults and value being as independent as possible.”

Dr. Msall said to better understand CP, the US needs to establish regional centers of excellence that capture outcomes for children with CP as they age. Some attempts at this sort of system has been made in regional children's hospitals and pediatric rehabilitation centers of excellence, he said.

Early Diagnosis

The authors identify four major risk groups for cerebral palsy: children born prematurely, newborns with encephalopathy or seizures, infants with malformations, and what they refer to as children with “unknown” causal pathways. For the latter, placental, genetic, and neuroimaging research would be valuable, Dr. Msall said.

Recognizing these risk factors and “creating collaborative systems of neonatal intensive care unit surveillance, early detection, repositories for biomarkers, and linkage to habilitation to promote plasticity and functioning could improve coordinated CP diagnosis and outcomes management,” Dr. Msall said.

Newborns at risk for CP should be screened by neurologists according to guidelines and referred to therapists and early intervention specialists for community support, Dr. Msall added. He noted that a bedside ultrasound in the neonatal intensive care unit can help identify children whose CP was associated with severe intracranial hemorrhage, ventriculomegaly, white matter or parenchymal brain injury.

Children with CP who do not come from high-risk populations are more difficult to diagnose early, said Michael Shevell, MD, CM, FAAN, professor in the departments of neurology and neurosurgery and pediatrics at McGill University and the lead investigator with the Canadian Cerebral Palsy Registry.

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“We now have more interventions, and they are all good, but prevention is better than anything.”—DR. ANN C. TILTON

“These are children who don't stay in a neonatal intensive unit after birth. They go home with their parents and early in the first year of life start to have some developmental aberrations,” he explained. He added that health care providers should be aware of red flags for CP, such as early hand preference, motor delay and stiffness in order to diagnose and connect children and their families with timely interventions.

Dr. Msall said providers should connect families with services to help the development of children with CP. “Neurologists need to recognize that there is a broad spectrum of known and unknown developmental brain injury,” he said. “Except in rare cases, the imaging does not predict a child's inability to learn gross motor, manipulative, or communication skills. Importantly, most children will perform a range of activities that families value, including self mobility, basic self care, communicating in sentences, and learning to read and calculate. Therefore, it is imperative that physicians emphasize functioning, participation, and community supports.”

Training Parents

Experts interviewed by Neurology Today agreed with the editoriialists that therapists should teach parents how to implement activities at home to help their children with CP.

“One hour spent with a therapist, no matter how good they are, once a week is not enough,” Dr. Shevell said. “The ‘therapists’ you have to engage are the parents and caregivers. They are with the child 24/7. If they are coached, instructed, and assisted in directing their play and stimulation with the child, hopefully that could replace the work of therapists, who are limited in number and availability.”

Dr. Tilton said she favors integrating therapy into a child's everyday world as opposed to making it only an out-of-home activity, which some families can't get to during working hours. “Going to therapy three days a week instead of two isn't going to make a difference. Children with CP need therapy every day,” she said.

To help relieve muscle stiffness, Dr. Tilton shows parents how to stretch their child's legs, hamstrings, and ankle with every diaper change. For older children, she encourages parents to have their child play with toys at a coffee table with their knees bent and back straight to improve their core strength. “Then, at the end of the day, you've done your exercise for 30 minutes. if you can integrate therapy into activities that are fun, it doesn't feel like work,” she said.

Prevention Is Best

Experts pointed out that because prematurity, maternal complications, and low birth weight are risk factors for CP, more resources should go to improving maternal care throughout pregnancy.

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“There is almost no current information about the epidemiology of cerebral palsy in the United States.”—DR. MAUREEN DURKIN

“It's the first rule of pediatrics, if you want a healthy baby, have a healthy mom,” Dr. Shevell said. He advocates for more funding of programs that reduce prenatal hypertension and diabetes, as well as programs that educate women on the use of tobacco, alcohol, and drugs during pregnancy and ensures access to medical care throughout pregnancy.

Some of the disparities observed in CP likely relate to unequal access to maternal care, but more research is needed to tease out the factors causing racial and socioeconomic disparities, he added.

“We need to develop strategies and test strategies that will hopefully modify social determinants and that will make a difference in outcome,” he said.

Dr. Durkin noted that her population-based data on CP shows that when researchers controlled for low birth weight, the racial disparity in CP went away. When they controlled for socioeconomic factors, the racial disparity was lessened, but was still there.

“We have to reduce the frequency of preterm birth in Black children to what it is in White children. If we were to do that, we would eliminate a lot of CP,” she said.

Dr. Tilton said she's glad the editorial is bringing attention to a condition that has been in the background. “We now have more interventions, and they are all good, but prevention is better than anything,” she said.

Disclosures

Drs. Durkin, Msall, Dr. Tilton and Shevell had no disclosures.

Link Up for More Information

• Berg KL, Shiu CS, Feinstein RT, Acharya K, et al. Children with developmental disabilities experience higher levels of adversity https://www.sciencedirect.com/science/article/abs/pii/S0891422219300587?via%3Dihub. Res Dev Disabil 2019;89:105–113.
• Carter FA, Msall ME. Health disparities and child development after prematurity https://journals.healio.com/doi/10.3928/19382359-20170919-02. Pediatr Ann 2017;46(10):e360–e364.
• Durkin MS, Maenner MJ, Benedict RE, et al. The role of socio-economic status and perinatal factors in racial disparities in the risk of cerebral palsy https://onlinelibrary.wiley.com/doi/10.1111/dmcn.12746. Dev Med Child Neurol 2015;57(9):835–843.
• Flanagan D, Gaebler D, Bart-Plange EB, Msall ME. Addressing disparities among children with cerebral palsy: Optimizing enablement, functioning, and participation https://content.iospress.com/articles/journal-of-pediatric-rehabilitation-medicine/prm210015. J Pediatr Rehabil Med 2021;14(2):153–159.