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Cerebral palsy refers to a group of permanent disorders that affect movement and posture. It is the most common form of physical disability in childhood, and is attributed to injury of the developing brain – in most cases, during pregnancy.
The condition affects at least 34,000 people in Australia and an estimated 17 million around the world.
“Individuals with cerebral palsy can present with multiple, different motor disorders with varying degrees of impairment, both by location and severity,” said Professor Elizabeth Elliott, Distinguished Professor in Paediatrics and Child Health in the Sydney Medical School.
This commonly includes hemiplegia, where one half of the body struggles with voluntary movement. People living with cerebral palsy (CP) also commonly have other impairments, including problems with vision, speech, cognition and epilepsy.
Recent research led by Dr Sarah McIntyre and her team at the University of Sydney’s Cerebral Palsy Alliance found the prevalence of CP has fallen by 25% in Australia and Europe. The research estimates the rate of CP in high-income countries has fallen to 1.6 babies out of every 1,000 children born, as compared to 2.1 per 1,000 in 2013.
But in low- and middle-income countries, including countries in Southeast Asia, higher rates of CP are being reported. While data is less certain, the current estimate is 3-4 babies per 1,000 children born – at least double the figure for high-income countries.
A team of researchers from the Faculty of Medicine and Health have been working with partners in Vietnam to document the scale of the condition in the country and help establish detection systems.
The team established an ongoing hospital-based surveillance program in Hanoi, Vietnam’s capital, and identified an alarmingly high burden of CP. Data collected from the National Children’s Hospital showed that 765 children were newly referred with the condition over a five-month period in 2017.
“Emerging data from low-and middle-income countries show that CP is more prevalent than in high income countries like Australia,” said Professor Elliot, who is part of the research team.
“Our team members, Associate Professor Gulam Khandaker and Dr Tasneem Karim, have conducted similar studies in other low-middle-income countries including Bangladesh and Indonesia and similarly observed a substantially greater burden of CP than in Australia.”
“Using data from our hospital-based surveillance study, we learned that there is a substantial burden of CP in children in Vietnam and that children often have severe motor impairment, a range of associated problems such as epilepsy, intellectual disability, visual, hearing and speech impairment, and poor nutrition and growth.”
The team’s study, published in Disability and Rehabilitation, included data on prenatal or perinatal risk factors reported, including the presumed timing of injury causing CP; demographic characteristics; and rehabilitation status across the cohort of 765 children.
Forthcoming research will also provide the first standardized description of brain neuroimaging findings from MRIs among children with CP in a low-and middle-income country, which offers valuable insights into potential causal pathways for CP.
Our work suggests that a significant proportion of CP in Vietnam might be preventable through better understanding of the causal factors and implementation of prevention strategies.
The paper finds that there is an urgent need for clinician training on CP in Vietnam and the use of evidence-based interventions, including access to assistive devices such as wheelchairs or walkers.
“Our work suggests that a significant proportion of CP in Vietnam might be preventable through better understanding of the causal factors and implementation of prevention strategies,” said Professor Elliot.
“Strategies could include improved care to prevent problems such as prematurity and birth asphyxia, early treatment of hyperbilirubinemia or severe jaundice (resulting in brain inflammation and permanent damage), improved management of multiple births, and appropriate treatment of neonatal hypoxic-ischemic encephalopathy – a brain injury caused by oxygen depletion.”
“Early diagnosis of CP, use of evidence-based treatments, and access to mobility devices and orthopedic care would also maximize quality of life,” she said.
The researchers plan to continue collaborating with teams in Hanoi from the National Children’s Hospital, Phenikaa University and Hanoi Medical University, to help inform prevention and timely interventions that improve the lives of children with CP and their families and work to minimize the stigma felt by many.
Researchers on the study included: Tasneem Karim, Thi Hong Hanh Khuc, Rachael Dossetor, Nguyen Thi Huong Giang, Trinh Quang Dung, Tran Vinh Son, Nguyen Xuan Hoa, Nguyen Hong Tuyet, Nguyen Thi Van Anh, Cao Minh Chau, Nguyen Van Bang, Nadia Badawi, Gulam Khandaker and Elizabeth Elliott.
The research was supported by the Cerebral Palsy Alliance Research Foundation.