Review: Latest findings in the spina bifida-related care of many comorbidities

Open spina bifida (SB), a neural tube defect (NTD), also known as myelomeningocele, remains the most complex congenital central nervous system abnormality consistent with long-term survival. It leads to known comorbidities and interventions, such as B. Executive function challenges, urinary and bowel incontinence and ventriculoperitoneal shunt. In this annual special, published in the Journal of Pediatric Rehabilitation Medicine, Distinguished experts review the latest knowledge in SB-related treatment of many comorbidities.

NTDs are a major cause of morbidity and mortality worldwide. Although many nations have introduced preventive laws to fortify staple grains with folic acid, there are still widely varying rates of NTDs in the world population. Nearly 300,000 babies with NTDs, including SB, are born worldwide each year. In North America, the prevalence is estimated at 39 infants per 100,000 live births.

The 15 research studies and reviews in this special issue, guest-edited by Jonathan Castillo, MD, MPH, Heidi Castillo, MD, Judy K. Thibadeau, RN, MN, and Timothy Brei, MD, highlight the latest findings from the SB -related care of many comorbidities, from amputations and scoliosis to sleep-disordered breathing.

“Spina bifida leads to emerging comorbidities and interventions, for example, increasing rates of autism spectrum disorder in individuals with SB have been reported using a population-based birth cohort of 32,220 subjectssaid co-guest editor Jonathan Castillo, MD, MPH, Department of Pediatrics, Meyer Center for Developmental Pediatrics, Texas Children’s Hospital and Baylor College of Medicine, Houston, TX, USA, and colleagues in an introductory editorial.In addition to new clinical observations, telecommunication platforms such as Zoom^® have emerged as SB-related clinical and research tools; new technologies such as telemedicine and customized electronic health records continue to be adapted for service in self-service.”

Topics in this issue include:

• The variability in lower extremity motor function in SB is only partially related to the motor level of the spine
• Association of race and adaptive functioning with health-related quality of life in pediatric SB
• A Retrospective Study in Arkansas of Sleep Disordered Breathing in the SB Population (Ages 1-20 Years)
• Functional level of the lesion scale: Validation of 14 years of research with the National SB Patient Registry
• Exploratory study on the provision of academic and health-related housing for transitional adolescents and emerging adults with SB
• Follow-up of brace-treated scoliosis in children with cerebral palsy and SB
• Acquired amputations in patients with SB
• Parent report on health management of SB in early childhood
• Use of antibiotics for asymptomatic bacteriuria in children with neurogenic bladder
• Assessing the risk of preterm birth in women with skeletal dysplasia and short stature
• Family challenges in personal transport of children with medical complexity
• Limitations of current developmental tests measuring children’s functional independence

As shown in one study, children with SB who have a shunt have more SB-related doctor visits, more visits to a specialist, and a greater number of different types of specialists than children without a shunt. Health care utilization results suggest that parents of children with shunts need a high level of supervision and care coordination to care for their child. The results of another study showed that persistent problems in the provision of school-related accommodation were identified by parents/youth. “This is a relevant area of ​​clinical practice to ensure students with special health needs and those with SB receive appropriate academic and health-related housing,” noted the guest editors.

The COVID-19 pandemic has presented particular challenges for children and adolescents living with SB, as well as for carers and healthcare workers. This issue contains several articles related to COVID-19, including:

• A report of a national survey on COVID-19 vaccination among people with SB
• Impact of the COVID-19 pandemic on child physiotherapists in the first year
• Pandemic decline in personal physical therapy as a factor in parent-perceived decline in functioning in children with neuromuscular disorders

A survey of the impact of the COVID-19 pandemic on child physical therapists found that while only a small percentage of child physical therapists contracted COVID-19 during the first year of the pandemic, nearly all experienced workflow changes caused by changing work patterns. Almost all (96.5%) of the child physiotherapists reported using telemedicine during the pandemic, compared to 14% before the pandemic. They reported numerous changes in their clinical operations and 50% said they did not have adequate personal protective equipment available for themselves or their staff at all times. Fifteen child physiotherapists (5.9%) reported being furloughed in the first year of the pandemic and three reported job losses.

From autism to mortality, from Central America to work in Africa, SB care and research are undergoing tremendous change. JPRM is a well-established platform for work done through collaborations in the National Spina Bifida Patient Registry. Education and advocacy can be achieved through dialogue about emerging issues in self-service care. One of the expected challenges of a rapidly growing international research community is the danger of parallel and disjointed work. The upcoming World Congress of the Spina Bifida Association, to be held March 22-25, 2023 in Tucson, Arizona, is expected to help provide a venue for connection and development of ongoing relationships between the centers. The Congress provides an international opportunity for dialogue and collaboration and will include pre-conference activities to foster transnational partnerships, including the first Global Health Symposium.”

dr Jonathan Castillo, MD, MPH, Department of Pediatrics, Meyer Center for Developmental Pediatrics, Texas Children’s Hospital and Baylor College of Medicine, Houston, TX, USA

Editor-in-Chief Elaine L. Pico, MD, FAAP, FAAPM&R, UCSF Benioff Children’s Hospital Oakland, CA, USA, welcomes the collaboration between the journal and the World Congress. “JPRM has helped professionals at home and abroad stay abreast of the latest investigative requests and their findings from institutions around the world. We are pleased to make the World Congress abstracts freely available and to participate fully in this global dissemination of critical information on SB health care and related issues.”