Pediatric spina bifida (SB) and spinal cord injury (SCI) are unfortunately common in our society, and their unique findings and comorbidities warrant special consideration. This manuscript will discuss the epidemiology, pathophysiology, prevention, and management strategies for children growing and developing with these unique neuromuscular disorders. Growth and development of the maturing child places them at high risk of spinal cord tethering, syringomyelia, ascending paralysis, pressure injuries, and orthopedic abnormalities that must be addressed frequently and judiciously. Similarly, proper neurogenic bladder and neurogenic bowel management is essential not just for medical safety, but also for optimal psychosocial integration into the child’s expanding social circle.

Objective: To investigate the differences in delivery mode, daily dose, and catheter tip location in pediatric patients using intrathecal baclofen (ITB) pumps with spasticity plus dystonia versus spasticity alone. Methods: A single-center, cross-sectional study was performed by collecting retrospective data from electronic medical records. Demographic and diagnostic information was obtained, comparing patients with spasticity with or without dystonia. The data were analyzed for group differences using a two-tailed Student’s t-test. Categorical data were analyzed for group differences using Pearson’s χ² test. Results: A total of 137 patients met the criteria. The majority (114) had spasticity plus dystonia whereas only 23 were documented as spasticity alone. Simple continuous dosing was the most common delivery mode, but flex dosing was used more than twice as frequently with spasticity plus dystonia compared with spasticity alone (42% vs 17%). Patients with spasticity plus dystonia also had more rostral catheter tip locations. Conclusions: While it has been discussed anecdotally, this study confirms the supposition that patients with spasticity plus dystonia have increased dose requirements when compared with those with spasticity alone. Although there are no clear standards of care when managing these patients, they are often on higher daily dosages, are more likely to require flexed dosing method, and have higher catheter placements. Still, there are few studies that demonstrate improvements in dystonia with the use of ITB. In general, these patients would benefit from the development of universal standardizations as well as the confirmation that this is an appropriate treatment.

The prevalence of cerebral palsy (CP) varies globally, with higher rates and burden of disease in low- and middle-income countries. CP is a lifelong condition with no cure, presenting diverse challenges such as motor impairment, epilepsy, and mental health disorders. Research progress has been made but more is needed, especially given consumer demands for faster advancements and improvements in the scientific evidence base for interventions. This paper explores three strategies to accelerate CP research: consumer engagement, global clinical trial networks, and adaptive designs. Consumer engagement involving individuals with lived experience enhances research outcomes. Global clinical trial networks provide efficiency through larger and more diverse participant pools. Adaptive designs, unlike traditional randomized controlled trials, allow real-time modifications based on interim analyses, potentially answering complex questions more efficiently. The establishment of a CP Global Clinical Trials Network, integrating consumer engagement, global collaboration, and adaptive designs, marks a paradigm shift. The Network aims to address consumer-set research priorities. While challenges like ethical considerations and capacity building exist, the potential benefits for consumers, clinicians, researchers, and funding bodies are substantial. This paper underscores the urgency of transforming CP research methodologies for quicker translation of novel treatments into clinical practice to improve quality of life for those with CP.

The COVID-19 pandemic has been a challenge to healthcare systems around the world. Within pediatric rehabilitation medicine, management of intrathecal baclofen has been particularly challenging. This editorial reviews how programs in the US and Canada coped with the quickly changing healthcare environment and how we can learn from this pandemic to be prepared for future crises.

Structured AIM: To estimate prevalence of sensory symptoms in people with cerebral palsy (CP) across the lifespan. METHOD: In this cross-sectional study, the self-reported Sensory Processing Scale Inventory (SPS-I) was administered via REDCap between 2/1/22 and 8/15/22 to people with CP or their caregivers enrolled in the online MyCP Community Registry. We determined the association between SPS-I scores and age (Pearson correlation) and functional status as assessed using five validated functional classification systems for CP (ANOVA). We hypothesized that sensory symptoms would differ between younger and older individuals with CP. RESULTS: Of 155 responses (28% response rate, age 1-76 years, 34% male), 97% reported at least one bothersome sensory symptom. Total sensory symptoms decreased with age (R ² =0.12, p<0.0001), driven by decreases in hyposensitivity symptoms (R ² =0.32, p<0.0001), primarily tactile hyposensitivity (R ² =0.29, p<0.0001). Sensory symptoms increased with greater functional impairment across all functional domains (ANOVA, p<0.0001). However, the age-specific decrease in hypo-sensitivities was most pronounced in people with the greatest gross motor functional impairment (R ² =0.70, p=0.0004). INTERPRETATION: Our findings suggest that hypo-sensitivity, primarily tactile sensitivity, decreases with age in people with CP. Future work should assess whether decreased hyposensitivity contributes to other age-related changes in CP like increased pain. What this paper adds: Individuals with CP exhibit both hyper- and hypo-sensitivity across all sensory modalities Hyposensitivity decreases with age in people with CP, independent of GMFCS level Less hyposensitivity correlates with greater functional ability in people with CP Of all sensory modalities, tactile hyposensitivity correlates most strongly with age.

Purpose: This qualitative study explored how physicians assess caregiver reliability when determining eligibility for intrathecal baclofen (ITB) therapy in non-ambulatory children with cerebral palsy (CP) and how barriers can be surmounted. Caregiver reliability is critical for patient safety and treatment success. Methods: Twenty-two providers across five pediatric specialties were interviewed, focusing on decision-making regarding ITB in children with CP characterized as Gross Motor Function Classification System IV-V. A conventional content analysis approach was employed, with codes developed inductively by a multidisciplinary team. Results: Providers consistently cited caregiver reliability as a key factor in determining ITB eligibility. Reliability was often inferred from proxies such as geographic distance to care, social situation, and socioeconomic status. Providers acknowledged relying on “gut instinct” in the absence of standardized assessments. Suggested solutions to mitigate barriers included use of home health agencies, integration of social workers, and caregiver education programs. Conclusion: While ITB can greatly benefit children with CP, its success hinges on caregiver reliability. Providers often use subjective or indirect indicators in their assessments, raising concerns for bias and inequitable access. A standardized, multidisciplinary evaluation process, such as the one proposed here, could improve fairness and outcomes in ITB patient selection. Future research should identify objective, evidence-based indicators of caregiver reliability.