Journal of pediatric rehabilitation medicine最新文献

PurposeThe goal was to elucidate and present the current landscape of bladder biosensor technology for urinary volume monitoring in the management of neurogenic bladder. The need for such technology in managing neurogenic bladder in the pediatric population is discussed, as well as the challenges researchers currently face in advancing individual technologies.MethodsA literature review including 43 articles discussing bladder biosensor and related technology for continuous urinary volume monitoring was conducted. Articles ranged from original research studies to systematic reviews.ResultsVarious continuous bladder urine volume monitoring devices have been proposed and evaluated. These devices utilize principles of ultrasound, electrical impedance tomography, near infrared spectroscopy, pressure biosensor implantation, microwave radar, and frequency modulated continuous wave radar. While several studies have shown promise in correlating device measurements to bladder urinary volume changes, ultimately researchers have not been able to surmount the challenges of optimizing configuration of device components and the impacts of dynamic position, posture, body habitus, bladder location, and urine biochemical properties that demonstrate high interpersonal variability.ConclusionThe need for developing bladder biosensor technology to provide continuous urine volume monitoring in patients with neurogenic bladder remains great. Transitioning from a time-based clean intermittent catheterization approach to a volume-based approach would possibly improve neurogenic bladder patients' quality of life. While technologies face limitations that have stalled translation to clinical practice, there is potential to build upon past work to address current challenges and meet this ever-pressing need.

PurposeIndividuals with spina bifida (SB) often face substantial gaps in sexual and reproductive health (SRH) knowledge leading to low use of contraception, poor utilization of preventative sexual health care, unintended pregnancies, missed opportunities to pursue their SRH goals, and increased risk of abuse and coercion. Validated questionnaires are needed to reliably test and track the SRH and self-efficacy of adults with SB. This study aimed to develop a survey with content validity to assess five SRH domains in adults with SB.MethodsAn initial survey was informed by a targeted literature review as well as stakeholder and expert opinions. Social cognitive theory's self-efficacy concept, known for its predictive power in behavior change among those with physical disabilities, guided its development. The survey items were iteratively reviewed online by national sexual health experts using a modified Delphi method, assessing item clarity, relevance, and comprehensiveness. Then, cognitive interviews of the refined instrument were conducted with five adults with SB to analyze acceptance and understanding.ResultsOf the 26 potential panel members invited to participate, 22 (85%) responded and agreed to participate. There were seven urologists (two adult, five pediatric), six developmental pediatricians, six registered nurses from SB clinics, two physiatrists, and one medicine-pediatrics trained internist. Consensus was achieved after three rounds for 100 survey items. Following each round, items were refined through researcher consensus until the content validity index was met (agreement = 0.8-1.0) for each question, ensuring all domains were adequately represented. These domains included sexual knowledge/education, sexual practice, sexual safety/risk profile, history of abuse, and perceived self-efficacy.ConclusionContent validity, clarity, and functionality of a novel survey that probes five domains of SRH in adults with SB was established. The survey can be utilized in both research and clinical settings to assess baseline SRH knowledge, identify risky behaviors, and screen for sexual abuse.

PurposeThis study aimed to survey individuals who regularly use urinary catheters to understand health insurance coverage and out-of-pocket costs they experience to advocate for health-policy change.MethodsSurvey content was generated by non-profit organizations and programmed into Qualtrics. It was distributed in Spanish and English via email and social media accounts. The survey was open from 1/19/21-2/15/21 and only included individuals who either used catheters themselves or were the care partner of an individual who used catheters. For non-normally distributed data, log-transformed confidence intervals were used to achieve approximately normal distributions; data was then transformed to be analyzed using an approximate 95% confidence interval (CI), and a Mann-Whitney U test was completed to test the equality of medians between groups. Associations between catheter types and out-of-pocket costs were performed using the Kruskal-Wallace non-parametric test.ResultsOne thousand two hundred and forty seven individuals responded. An equal percentage (43%) of catheter users were covered by public/government or private insurance plans only; 14% had both. Among those with public/government insurance, 8% reported their insurance did not cover any catheter costs versus 17% of those with private insurance. The median yearly out-of-pocket costs for privately insured respondents who paid anything was $1200 compared to $540 for those with public/government insurance.ConclusionOut-of-pocket expenses for catheters vary. Those with public/government insurance pay less out-of-pocket.

For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. It has been noted that the concept of "blue marble health," a policy framework to illustrate trends in the geographic distribution of neglected diseases affecting at-risk populations, may also have a place in illustrating the SB care paradigm in high-income countries such as those in North America and Europe. Concurrently, JPRM has dawned to provide insight into SB care worldwide, both in the Global North as in the Global South. Also in recent years, the Guidelines for the Care of People with Spina Bifida, a product of the Spina Bifida Association (SBA) Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, have mapped the advance. The SBA continues to catalyze open and in-person dialogue among clinicians and investigators. The 2025 Spina Bifida Clinical Care Meeting, hosted by Shriners Children's Northern California, included the involvement of adult members of the SB community, parents, clinicians, and researchers. Subsequently, this special issue includes state of the art articles initially presented at this conference. Now it is up to all of us to uphold the standard as we embark onto equitable and sustainable development of opportunities for those affected by SB across our diverse and global community.

PurposeThe objective of this article was to explore the prevalence, pathophysiology, diagnosis, and management of sleep-related breathing disorders (SRBDs) in children with spina bifida and specifically myelomeningocele (MMC).SummarySRBDs, including obstructive and central sleep apnea, hypoventilation, and hypoxia, are prevalent in children with spina bifida, particularly those with MMC. This high prevalence, ranging from 40% to 80%, is often attributed to brainstem abnormalities, upper airway dysfunction, and restrictive lung disease. Despite the general efficacy of treatments like adenotonsillectomy in typical pediatric populations, these interventions show lower success rates in children with spina bifida. Comprehensive polysomnography is crucial for accurate diagnosis due to the atypical presentation of symptoms. Management strategies include surgical interventions, supplemental oxygen, noninvasive ventilation, and, in severe cases, tracheostomy. A multidisciplinary approach involving various specialties is essential for optimal care and improved outcomes.ConclusionEarly diagnosis through polysomnography and a multidisciplinary management strategy are critical for effectively treating SRBDs in children with spina bifida, aiming to mitigate associated comorbidities and enhance overall quality of life.

Purpose: This paper describes the development and characteristics of a multi-disciplinary spina bifida clinic in Qatar considering the recently revised and globally available Guidelines for the Care of People with Spina Bifida (GCPSB).

Methods: A retrospective chart review was performed on individuals in Sidra's multidisciplinary spina bifida clinic database from January 2019 to June 2020. Their electronic health records were reviewed for demographics, as well as neurosurgical, urologic, rehabilitation, and orthopedic interventions.

Results: There were 127 patients in the database; 117 met inclusion criteria for diagnoses of myelomeningocele, meningocele, sacral agenesis/caudal regression, and/or spinal lipoma. Generally, Qatar is following GCPSB recommendations for multidisciplinary care. Consanguineous relationships, difficulties with access to urological and rehabilitation supplies and equipment, school access, and variable timing of neurosurgical closure were areas that demonstrated differences from GCPSB recommendations due to barriers in implementation.

Conclusion: The GCPSB recommendations are applicable in an international setting such as Qatar. Despite a few barriers in implementing some of the recommendations, this new multi-disciplinary spina bifida clinic demonstrates alignment with many of the GCPSB guidelines.

Pediatric spinal cord injury (SCI) most commonly affects the cervical region. Central cord syndrome most often occurs in the lower cervical injury due to hyperextension injury, while anterior cord syndrome is primarily due to vascular infarction after hyperextension injury. An unusual case of a pediatric patient who physically presented with central cord syndrome but radiologically had evidence of anterior spinal artery syndrome is described.A two-year-old male presented after a fall from three feet with flaccid upper extremities and dysesthesias but maintained functional strength in bilateral lower extremities. Although his clinical presentation was that of central cord syndrome, he was found to have an anterior spinal artery infarct spanning from C2-T3 with a ligamentous injury at C3 and an incidental finding of Chiari I malformation on MRI. Given the negative evaluation for a cardiac or hematologic source of embolus and normal angiography, it was theorized that compression of vertebral arteries by previously undiagnosed Chiari I malformation in the setting of trauma could have made the patient more vulnerable to this complication. During inpatient rehabilitation, he regained scapular movement and shoulder flexion. However, he regained distal movement in supination, wrist extension, and finger flexion instead of the more usual proximal-to-distal motor recovery observed in SCI. While he had a relative sparing of strength in his legs, he had impaired proprioception and balance, leading to gait impairment.This case highlights the complexity of pediatric cervical SCI diagnosis and prognostication. While classic SCI subtypes are well described, many pediatric and adult patients will present and recover in unexpected ways. All with SCI should be evaluated thoroughly for common etiologies and transitioned to rehabilitation therapies to assist in recovery.