Journal of Pediatric Rehabilitation Medicine - Volume 15, issue 4
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The Journal of Pediatric Rehabilitation Medicine (JPRM): An Interdisciplinary Approach Throughout the Lifespan is designed to parallel the multidisciplinary teams caring for children, adolescents and adults with childhood-onset physical disabilities and complex care needs worldwide. Published quarterly, topics include, and are not limited to, cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, limb deficiency, muscular dystrophy, stroke, cancer, developmental delays, and rare disorders. Furthermore, the journal welcomes papers dedicated to pediatric rehabilitation from a global health perspective.
The aim of JPRM is to engage a diverse group of international experts with the goal of providing readers with comprehensive information regarding children and adolescents requiring rehabilitation. JPRM brings together specialists from medicine, nursing, psychology, social work, nutrition, child life, family centered care, and occupational, physical, and speech therapy. For manuscript submissions, authorship involving at least two different specialties is encouraged, although not required, to facilitate a transdisciplinary and collaborative approach. Manuscripts are blinded and peer reviewed including biostatistical analysis. Authors are invited to submit original research, systematic and scoping reviews, guidelines, protocols, care pathways, case reports, book reviews, commentaries, editorials, and dates for future conferences.
Abstract: Whereas legislation mandates for folic acid fortification have been implemented throughout many nations, divergent neural tube defects (NTDs) prevalence rates still remain among the world’s populations. In North America, the prevalence estimate is 39 infants per 100,000 live births. Open spina bifida (SB), also known as myelomeningocele, remains the most complex congenital abnormality of the central nervous system compatible with long term survival; this recognized complexity gives rise to emerging comorbidities and interventions. For example, increasing autism spectrum disorder rates have been reported among individuals with SB utilizing a 31,220 subject population-based birth cohort. Along with new clinical observations, telecommunication…platforms such as Zoom® have evolved as clinical and investigational tools. Historically, society meetings, research conferences, and journals have provided opportunities for professional development and dissemination of up-to-date materials. The Journal of Pediatric Rehabilitation Medicine (JPRM) has arisen as an open-access global platform for the dissemination of SB-related inquiry. The journal has also highlighted the research presented at the Spina Bifida Association’s previous Spina Bifida World Congresses. At the last congress, which was held in 2017, twenty-three countries were represented; this number is expected to grow by the next convocation in 2023. This congress will provide an opportunity for health care professionals from around the globe to present a broad array of research topics and build collaborations. Concurrently, the JPRM will continue as an open-access platform for SB advocacy, care, education, and investigation, across our fast changing world for the international SB community well into the future.
Keywords: Myelomeningocele, autism, telemedicine, international collaboration, global health
Abstract: PURPOSE: This study aimed to conduct a national survey of individuals with spina bifida (SB) and their care partners to assess COVID-19 vaccination behaviors and vaccine uptake. METHODS: A survey instrument was designed to assess current vaccination status, general perceptions towards vaccinations, and barriers to vaccination within the SB community. Surveys were administered to individuals with SB or their representing care partner. Chi-squared and independent-samples t -tests were used to analyze the relationship between vaccine uptake and demographics. Multivariable logistic regression modeling was used to test which predictors impacted the odds that a participant received a COVID vaccine.…RESULTS: A total of 1,412 participants completed the questionnaire, and 1,145 participants reported their COVID-19 vaccine status. The most common reason for not getting vaccinated was a concern about vaccine safety and efficacy. Overall, healthcare professional recommendations played a significant (OR 2.77 p < 0.001) role in whether to get vaccinated. CONCLUSION: About one in five individuals with SB have not received any COVID-19 vaccine. Actionable and modifiable factors were identified which may help increase vaccine uptake. Importantly, health providers play a critical role in COVID-19 vaccination messaging and should emphasize vaccine safety and efficacy.
Keywords: Spina bifida, COVID-19, vaccination, vaccination hesitancy, public health
Abstract: PURPOSE: Previous studies have found motor function to correlate with spinal motor level and, accordingly, individuals with spina bifida are frequently categorized clinically in this manner. The aim of the current study was to describe how lower extremity functions including strength, selective motor control, and mirror movements vary by motor level in children and young adults with spina bifida. METHODS: A single center, retrospective, cross-sectional, descriptive study using data collected in the National Spina Bifida Patient Registry and by a gait laboratory was performed. RESULTS: Seventy-seven individuals with spina bifida were included with the majority having…myelomeningocele (59 lumbar, 18 sacral motor level). Lower extremity strength and selective motor control varied to a certain extent with motor level. However, 90% of individuals showed strength or weakness in at least one muscle group that was unexpected based on their motor level. Mirror movements did not clearly vary with motor level. CONCLUSION: Lower extremity strength, selective motor control, and mirror movements in individuals with spina bifida were not entirely predicted by motor level. This highlights the possible need for an improved spina bifida classification system that describes not only spinal motor level but more clearly defines a particular individual’s functional motor abilities.
Keywords: Spina bifida, myelomeningocele, strength, selective motor control, mirror movements
Abstract: PURPOSE: The purpose of this study was to evaluate associations of ethnicity and adaptive function with health-related quality of life (HRQOL) in youths with spina bifida myelomeningocele (SBM). METHODS: Participants included Hispanic (n = 75) and non-Hispanic White (n = 86) children and adolescents with SBM. Participants completed ratings of adaptive function and SBM-specific HRQOL. A series of linear multiple regression models was computed to investigate whether ethnicity moderates the relation between adaptive function and HRQOL. RESULTS: Results showed that greater adaptive function was associated with higher HRQOL. While no relations were found between ethnicity and HRQOL, a…significant interaction was observed between adaptive function and ethnicity over and above other terms. Although groups did not differ on HRQOL at lower levels of adaptive function, Hispanic participants rated higher HRQOL relative to non-Hispanic White participants at higher levels of adaptive function. Further analysis showed this was true of both nonmotor and motor aspects of adaptive function. CONCLUSION: Results suggested complex relations between ethnicity and adaptive function with HRQOL, highlighting the importance of optimizing adaptive functioning in youth with SBM.
Keywords: Myelomeningocele, adaptive functioning, minoritized health
Abstract: PURPOSE: Sleep related breathing disorders (SRBD) are seen at disproportionately higher rates in children with spina bifida compared with their same aged peers. SRBD such as obstructive sleep apnea (OSA) or central apnea are associated with developmental and cognitive consequences, and sudden death. METHODS: Participants aged 1 to 20 years with a diagnosis of spina bifida were recruited from a pediatric academic hospital spinal cord specialty clinic to evaluate the prevalence and impact of sleep disorders in the spina bifida population; 76 polysomnogram (PSG) reports spanning a 3-year period were reviewed in this retrospective cohort study.…RESULTS: Of the PSGs reviewed, 37 (49%) indicated the presence of SRBD, and 28 (76%) of those children required an escalation of management (surgical intervention or additional respiratory support). These results are consistent with previous studies and further emphasize the clinical impact of SRBD on children with spina bifida by describing the interventions that followed an abnormal PSG. CONCLUSION: The high prevalence of SRBD in the spina bifida population supports the need for additional research to develop sleep questionnaires specific to spina bifida that can predict abnormal PSG clinically and to determine the standard of care following an abnormal PSG, chiefly in OSA and central apnea.
Keywords: Spina bifida, sleep related breathing disorders, SRBD, polysomnogram, PSG
Abstract: PURPOSE: Functional level of lesion (FLOL) is a grading of the level of neurological function in patients with myelomeningocele and other forms of spina bifida. It has been widely used as an independent variable in studies of spina bifida, but its inter-rater reliability has not previously been tested. The purpose of this study was to measure inter-rater reliability of FLOL testing and compare testing performed by a non-medically trained research associate to testing performed by a pediatric rehabilitation medicine specialist. METHODS: Children in a multi-disciplinary spina bifida clinic underwent FLOL grading by a non-medically trained research associate. On…the same day, these children were also graded by a pediatric rehabilitation medicine specialist. Cohen’s weighted kappa statistic was used to compare grading, with the rehabilitation medicine specialist considered the gold standard. RESULTS: A total of 71 patients participated. FLOL was graded for left and right leg for each participant, resulting in 142 measurements. Cohen’s weighted kappa was κ= 0.809, with a standard error of 0.034 and 95% confidence interval 0.723–0.875, indicating substantial agreement. CONCLUSION: FLOL as measured according to the instructions of the National Spina Bifida Patient Registry by a non-medically trained researcher is a reliable method to grade lower extremity function in spina bifida.
Abstract: PURPOSE: The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years. METHODS: Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis. RESULTS: The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean…intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%). CONCLUSION: Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.
Abstract: PURPOSE: This study aimed to describe brace use, progression of scoliosis, and surgery in children with cerebral palsy (CP) and spina bifida (SB) who were initially treated with a brace. METHODS: Medical records were retrospectively analysed for brace compliance, treatment complications, curve size measurements with and without the brace at both start and at follow-up, and number of patients undergoing spine surgery. RESULTS: Sixty-eight children were included (CP 47, SB 21), 37 of whom were girls, with a mean age at start of treatment of 11.1 (CP) and 8.2 (SB) years. Most had severe motor problems;…only four children with CP and five with SB were able to walk. Thirty-five in the group with CP and 11 in the group with SB had a curve size over 40°. Forty used the brace full-time, 19 half-time and nine for a varying proportion of time. Transient complications of brace treatment were seen in 28%. The yearly progression of curve-size was 4.2° in CP and 2.3° in SB. Twenty-eight patients underwent surgery and complications were present in 75% of these patients. Twenty-seven out of 46 patients with severe scoliosis did not undergo surgery. CONCLUSION: Brace treatment was possible, even in patients with severe scoliosis. Bracing can delay the progression of scoliosis.
Abstract: PURPOSE: The purpose of this study was to assess if the incidence of lower extremity (LE) pressure injuries resulting in amputations was more frequent in ambulatory versus non-ambulatory patients with spina bifida. METHODS: The medical records of all patients at a large pediatric rehabilitation hospital who had spina bifida and a history of a pressure injury between 1997–2018 were retrospectively reviewed. RESULTS: In this study, 112 patients with spina bifida developed LE pressure injuries, 53 patients walked with braces and/or an assistive device, and 59 patients used a wheelchair for mobility. Of the 11 patients who…had amputations, 10 walked and 1 did not walk prior to their amputation. Ambulatory patients with LE pressure injuries had a 19% chance (10 out of 53 patients) of requiring an amputation. Non-ambulatory patients with a LE pressure injury had only a 2% chance (1 out of 59 patients) of requiring an amputation. Ambulatory patients with LE pressure injuries were at a much higher risk of requiring an amputation than patients who did not walk (p -value of < 0.005). CONCLUSION: Patients with spina bifida who are ambulatory and develop a pressure injury have a high risk of ultimately needing an amputation and should be monitored and treated aggressively.
Abstract: PURPOSE: This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt. METHODS: Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3–6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts. RESULTS: Parents of 101 children…with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician’s office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications. CONCLUSION: SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.
Keywords: Spina bifida, health care management, myelomeningocele