Pandemic intake questionnaire to improve quality, effectiveness, and efficiency of outpatient neurologic and developmental care at the Kennedy Krieger institute during the COVID-19 pandemic.

Background: The COVID-19 pandemic uniquely affects patients with neurologic and developmental disabilities at the Kennedy Krieger Institute. These patients are at increased risk of co-morbidities, increasing their risk of contracting COVID-19. Disruptions in their home and school routines, and restrictions accessing crucial healthcare services has had a significant impact. Methods: A Pandemic Intake questionnaire regarding COVID-19 related medical concerns of guardians of patients was distributed using Qualtrics. Data from May-December 2020 were merged with demographic information of patients from 10 clinics (Center for Autism and Related Disorders (CARD), Neurology, Epigenetics, Neurogenetics, Center for Development and Learning (CDL) Sickle Cell, Spinal Cord, Sturge-Weber syndrome (SWS), Tourette's, and Metabolism). A provider feedback survey was distributed to program directors to assess the effectiveness of this intervention. Results: Analysis included responses from 1643 guardians of pediatric patients (mean age 9.5 years, range 0-21.6 years). Guardians of patients in more medically complicated clinics reported perceived increased risk of COVID-19 (p < 0.001) and inability to obtain therapies (p < 0.001) and surgeries (p < 0.001). Guardian responses from CARD had increased reports of worsening behavior (p = 0.01). Providers increased availability of in-person and virtual therapies and visits and made referrals for additional care to address this. In a survey of medical providers, five out of six program directors who received the responses to this survey found this questionnaire helpful in caring for their patients. Conclusion: This quality improvement project successfully implemented a pre-visit questionnaire to quickly assess areas of impact of COVID-19 on patients with neurodevelopmental disorders. During the pandemic, results identified several major areas of impact, including patient populations at increased risk for behavioral changes, sleep and/or disruptions of medical care. Most program directors reported improved patient care as a result.

Acute flaccid myelitis: long-term outcomes recorded in the CAPTURE study compared with paediatric transverse myelitis.

BACKGROUND: Since 2014, the USA has documented three outbreaks of acute flaccid myelitis (AFM). Unique features and treatment responses of this myelitis variant have not been prospectively studied. This study prospectively measured outcomes in paediatric myelitis patients relative to treatments. METHODS: This was a prospective, multicentre, non-randomised, observational cohort study. The study duration was 5 years and the length of follow-up was 1 year. This study collected data from children and families in North America. Patients were enrolled at academic centres with expertise in myelitis or online via a web portal. Paediatric patients diagnosed with myelitis were eligible for enrolment in the study within 6 months of onset of symptoms. Patients were characterised as transverse myelitis (TM) or the AFM variant based on clinical and radiographic findings. RESULTS: The cohort of 90 patients included patients with AFM and TM. Of the 51 patients with AFM there was evidence of two clinically relevant patterns. This included a grey matter restricted form of AFM and a cohort with concomitant white matter that could explain lower extremity motor deficits in patients with lesions restricted to the cervical spine. The improvement in deficits with the use of corticosteroids was similar to what was observed in the TM cohort (p=0.97). CONCLUSIONS: Clinicians should consider on a case by case basis the approach to therapy for AFM patients. Prospective controlled studies of long-term outcomes would be useful in this growing patient population.

Exercise in the Aquatic Environment for Patients With Chronic Spinal Cord Injury and Invasive Appliances: Successful Integration and Therapeutic Interventions.

OBJECTIVE: Our primary objectives of this initial "proof-of-principle" trial were to evaluate the interventions used in skilled aquatic therapy and to identify any clinical benefits for individuals with spinal cord injuries who use invasive appliances including pressure injury dressings, suprapubic catheters, indwelling catheters, colostomy bags, and tracheostomy tubes. DESIGN: This is a retrospective chart review of patients with chronic spinal cord injuries using invasive appliances who had also undergone skilled aquatic therapy. RESULTS: Forty-nine patients with traumatic spinal cord injuries demonstrated scores showing statistically significant improvement using their total mobility and self-care of the Spinal Cord Independence Measure III (P ≤ 0.021, 0.039, 0.021) scores. Forty-five patients with traumatic spinal cord injuries demonstrated significant improvement of ASIA Impairment Scale motor scores (P ≤ 0.002) and nine patients with traumatic spinal cord injuries walked longer distances in 6-min walk test (P ≤ 0.011). The Spinal Cord Independence Measure III efficiency was 0.26 per hour (95% confidence interval = 0.037-0.475). There was one reported unplanned bowel evacuation that occurred but did not prevent future therapy. All patients successfully completed a sequence of aquatic therapy. CONCLUSIONS: Spinal cord injury patients with various invasive appliances can safely participate in specialized aquatic therapy without complications and seem to achieve clinically significant benefits. We recommend that spinal cord injury rehabilitation centers seek out and connect with opportunities for aquatic therapy within their institutions and communities.

Independent sailing with high tetraplegia using sip and puff controls: integration into a community sailing center.

BACKGROUND: We are continually rediscovering how adapted recreational activity complements the rehabilitation process, enriches patients' lives and positively impacts outcome measures. Although sports for people with spinal cord injuries (SCI) has achieved spectacular visibility, participation by high cervical injuries is often restricted due to poor accessibility, safety concerns, lack of adaptability, and high costs of technology. METHODS: We endeavor to demonstrate the mechanisms, adaptability, accessibility, and benefits the sport of sailing creates in the rehabilitative process. Our sailor is a 27-year-old man with a history of traumatic SCI resulting in C4 complete tetraplegia. RESULTS: The participant completed an adapted introductory sailing course, and instruction on the sip-and-puff sail and tiller control mechanism. With practice, he navigated an on-water course in moderate winds of 5 to 15 knots. DISCUSSION: Despite trends toward shorter rehabilitation stays, aggressive transdisciplinary collaboration with recreation therapy can provide community and natural environment experiences while inpatient and continuing post discharge. Such peak physical and psychological experiences provide a positive perspective for the future that can be shared on the inpatient unit, with families and support systems like sailing clubs in the community. CONCLUSION: Rehabilitation theory directs a team process to achieve patient self-awareness and initiate self-actualization in spite of disablement. Utilization of local community sailing centers that have provided accessible assisted options provides person-centered self-realization of goals as assisted by family and natural supports. Such successful patients become native guides for others seeking the same experience.

Activity-Based Restorative Therapies after Spinal Cord Injury: Inter-institutional conceptions and perceptions.

This manuscript is a review of the theoretical and clinical concepts provided during an inter-institutional training program on Activity-Based Restorative Therapies (ABRT) and the perceptions of those in attendance. ABRT is a relatively recent high volume and intensity approach toward the restoration of neurological deficits and decreasing the risk of secondary conditions associated with paralysis after spinal cord injury (SCI). ABRT is guided by the principle of neuroplasticity and the belief that even those with chronic SCI can benefit from repeated activation of the spinal cord pathways located both above and below the level of injury. ABRT can be defined as repetitive-task specific training using weight-bearing and external facilitation of neuromuscular activation. The five key components of ABRT are weight-bearing activities, functional electrical stimulation, task-specific practice, massed practice and locomotor training which includes body weight supported treadmill walking and water treadmill training. The various components of ABRT have been shown to improve functional mobility, and reverse negative body composition changes after SCI leading to the reduction of cardiovascular and other metabolic disease risk factors. The consensus of those who received the ABRT training was that ABRT has much potential for enhancement of recovery of those with SCI. Although various institutions have their own strengths and challenges, each institution was able to initiate a modified ABRT program.

Functional electrical stimulation as a component of activity-based restorative therapy may preserve function in persons with multiple sclerosis.

OBJECTIVE: To examine the effect of functional electrical stimulation (FES) cycling on disability progression in persons with multiple sclerosis (MS). DESIGN: Retrospective cohort, 40 participants with mean follow-up of 15 months. Setting International Center for Spinal Cord Injury at Kennedy Krieger Institute in Baltimore, a rehabilitation referral center. PARTICIPANTS: Forty consecutive persons with MS undergoing rehabilitation from 2007 to 2011, with at least two evaluations based on the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI). Interventions FES cycling as part of activity-based restorative therapy interventions. OUTCOME MEASURES: Change in Expanded Disability Status Scale (EDSS) and ISNCSCI motor, light touch, and pin prick scores from baseline to latest evaluation. RESULTS: In 71% of patients, activity-based rehabilitation included FES cycling. There was no disability progression on the EDSS. Lower extremity motor scores improved or stabilized in 75% of patients with primary progressive MS (PPMS), 71.4% with secondary progressive MS (SPMS), and 54.5% with relapsing remitting MS (RRMS). Among patients with improved or stabilized lower extremity motor function, PPMS recorded a mean 9% improvement, SPMS 3% and RRMS 6%. In PPMS, use of FES showed trend towards improvement in motor scores (P = 0.070). CONCLUSIONS: FES as part of activity-based rehabilitation may help preserve or improve neurological function in patients with MS.

Use of a virtual reality physical ride-on sailing simulator as a rehabilitation tool for recreational sports and community reintegration: a pilot study.

Participation in sailing by people with disabilities, particularly in small sailboats, is widely regarded as having positive outcomes on self-esteem and general health for the participants. However, a major hurdle for people with no previous experience of sailing, even by those without disabilities, is the perception that sailing is elitist, expensive, and dangerous. Real-time "ride-on" sailing simulators have the potential to bridge the gap between dry-land and on-the-water sailing. These provide a realistic, safe, and easily supervised medium in which nonsailors can easily and systematically learn the required skills before venturing out on the water. The authors report a 12-wk pilot therapeutic sailing program using the VSail-Access sailing simulation system followed by on-water experience. After completion of the training, all subjects demonstrated the ability to navigate a simple course around marker buoys (triangular configuration) on the computer screen, the ability to sail independently in winds of moderate strength (up to 14 knots) on water, and measurable improvements in their psychologic health. In addition, the subjects were able to participate in a sports activity with their respective family members and experienced a sense of optimism about their future.

High-voltage electrical stimulation for the management of stage III and IV pressure ulcers among adults with spinal cord injury: demonstration of its utility for recalcitrant wounds below the level of injury.

CONTEXT: patients with spinal cord injury (SCI) have many factors that are associated with pressure ulcer formation, including paralysis, loss of sensation, poor nutrition, anemia, and skin maceration related to incontinence. Treatment of these ulcers involves relieving pressure, improving nutrition and skin hygiene, treating infections, removing necrotic tissues, and applying the appropriate dressings. However, some cases are not responsive to the above treatment. Electrical stimulation (ES) is thought to enhance soft tissue healing through promotion of protein synthesis, inhibition of bacterial growth, facilitation of epithelial tissue migration, improvement of blood flow, and tensile strength. This data is mainly based on evidence from animal studies and very few rigorously controlled studies conducted in humans. OBJECTIVE: To demonstrate the effectiveness of ES in the treatment of recalcitrant pressure ulcers. METHODS: Retrospective case series describing the care of adults with SCI and recalcitrant pressure ulcers. ES was applied directly into the wound bed: 60 minutes per session, 3-5 times per week; with an intensity of 100 milliamperes and a frequency of 100 pulses per second. Polarity was negative initially and was switched weekly. The amplitude and wave form were maintained throughout. RESULTS: The long-standing (11-14 months) pressure ulcers were completely healed after 7 to 22 weeks of treatment with high-voltage ES. CONCLUSION/CLINICAL RELEVANCE: This case series demonstrates the effectiveness of ES for enhanced healing of Stage III-IV ulcers otherwise unresponsive to standard wound care. Further study is needed to identify the most effective protocol for ES therapy in the treatment of recalcitrant pressure ulcers.

Rehabilitation in transverse myelitis.

The consequences of neurologic injuries related to transverse myelitis (TM) are long-lasting and require rehabilitative interventions in about two-thirds of cases. Because numerous neural repair mechanisms are dependent on maintenance of an optimal amount of activity both above and below the injury level, rehabilitation and exercise are useful not only for compensatory functional purposes but also as tools in neural system restoration. The application of established neurophysiologic principles to post-TM rehabilitation has substantial impact on optimizing residual functional capabilities while facilitating the processes of central plasticity and reorganization of sensory and motor programming. The process of neurorehabilitation thereby serves both to treat the patient with TM and to help physicians interrogate and dissect the mechanisms involved in spinal cord injury, neuroprotection, and, ultimately, recovery. Post-TM rehabilitation is lifelong and should be integrated into daily living in a home setting as part of the global management of paralysis, a chronic condition with significant comorbidities.

Acute spinal cord injury and infection with multidrug-resistant Acinetobacter calcoaceticus-baumannii complex among returning Operation Iraqi Freedom soldiers: Successful innovations in rehabilitation during isolation.

Concerns about drug-resistant infectious organisms are increasing in rehabilitation facilities. Resulting isolation protocols can potentially challenge the patients' access to medical care, psychological adaptation, mobility, and environmental interaction and therefore hinder the rehabilitation process. We report a systematic, retrospective case review of an active-duty Army sergeant who sustained a C5 American Spinal Cord Injury Association Impairment Scale A spinal cord injury while serving in Operation Iraqi Freedom. The patient's acute rehabilitation was complicated by an Acinetobacter calcoaceticus-baumannii complex infection, in the blood and urine, contracted while in Iraq. Isolation protocols were designed to enable regular hands-on contact for proprioceptive neuromuscular facilitation, transfers, wheelchair fitting, mobility training, and environmental control. After 1 mo of comprehensive acute interdisciplinary rehabilitation, delivered in a single room on the spinal cord injury unit, the patient acquired functional skills comparable with other complete C5 tetraplegics in our unit. If a patient with spinal cord injury must be placed in isolation, it is still feasible to conduct a comprehensive interdisciplinary rehabilitation program while strictly adhering to contact isolation protocols.