Developmental Skills and Neurorehabilitation for Children With Batten Disease: A Retrospective Chart Review of a Comprehensive Batten Clinic.

BACKGROUND: Batten disease is a rare, progressive neurogenetic disorder composed of 13 genotypes that often presents in childhood. Children present with seizures, vision loss, and developmental regression. Neurorehabilitation services (i.e., physical therapy, occupational therapy, and speech-language therapy) can help improve the quality of life for children and their families. Owing to the rarity of Batten disease, there are no standardized clinical recommendations or outcome assessments. To describe developmental profiles, current dose of neurorehabilitation, and outcome assessments used clinically for children diagnosed with Batten disease. METHODS: Electronic medical records of 70 children with Batten disease (subtypes n = 5 CLN1; n = 25 CLN2; n = 23 CLN3; n = 17 CLN6) were reviewed (7.0 ± 3.4 years). Descriptive statistics were used to describe clinical features, developmental skills, dose of neurorehabilitation, and outcome assessment use. RESULTS: Across CLN subtypes, most children experienced vision impairments (61%) and seizures (68%). Most children demonstrated delays in fine motor (65%), gross motor (80%), cognitive (63%), and language skills (83%). The most common frequency of neurorehabilitation was weekly (42% to 43%). Two standardized outcome assessments were used to track developmental outcomes: Peabody Developmental Motor Scales, second edition (30% of children completed this assessment) and Preschool Language Scales, fifth edition (27.4% of children completed this assessment). CONCLUSIONS: Neurorehabilitation professionals should understand the clinical features and prognosis for children with Batten disease. The child's clinical features and family preferences should guide the rehabilitation plan of care. Future work needs to be completed to define dosing parameters and validate outcome assessments for neurorehabilitation services.

Development of a Novel Massage Therapy Outcome Measure for Children and Young Adults Receiving Hematopoietic Cell Transplant.

Background: Children receiving hematopoietic stem cell transplantation (HCT) often experience an unfortunate sequalae of negative effects including pain, deconditioning, and anxiety. Massage therapy (MT) has demonstrated effective non-pharmacological management of fatigue, pain, and anxiety in patients undergoing cancer treatment. Existing studies have been limited by the lack of available MT-specific outcome measures to track responses to interventions. Purpose: This study aimed to describe the creation of a novel MT-specific outcome measure to be utilized in the pediatric acute-care setting and establish construct validity for this measure to assess clinical effectiveness of MT interventions. Setting: An oncology ward at a large pediatric tertiary medical center in the United States. Participants: A total of 58 children and young adults undergoing HCT. Research Design: Retrospective Cohort Study. Intervention: A panel of massage therapists created a novel outcome measure, OMPREP, for use in MT sessions and performed a literature review to ensure face validity of the tool. This outcome measure was administered to patients and data were collected retrospectively to assess construct validity. Results: A total of 1,333 MT sessions were completed (80.7% completion rate) with the novel OMPREP outcome measure utilized on 100% of visits. Mean engagement (p<.001), response (p<.001), and pain (p<.001) scores were all significantly greater at evaluation and discharge compared to the lowest observed scores post-HCT. Conclusion: The novel MT-specific outcome measure, OMPREP, was feasible and demonstrated construct validity when implemented in a pediatric acute-care setting by massage therapists. This new tool may offer a quantitative measure of MT-interventions and assist in tracking patient outcomes.

Selective Dorsal Rhizotomy: Patient Demographics and Postoperative Physical Therapy.

BACKGROUND: Selective dorsal rhizotomy (SDR) is a surgical procedure that permanently alters lower extremity spasticity, common in children with spastic cerebral palsy (CP). Intensive postoperative physical therapy (PT) is recommended following SDR. The first purpose of this study is to describe and compare patient demographics between children who received SDR and the population of children with CP at one institution. The second purpose of this study is to compare the completed dose of postoperative PT with the clinically recommended dose for a subset of ambulatory children who underwent SDR. METHODS: This retrospective, observational study included 60 children with spastic CP following SDR. A subset (n = 12 ambulatory children) was included to describe the dose of postoperative PT. Information gathered from electronic medical records included age at the time of SDR, sex, Gross Motor Function Classification System level, anatomic distribution, race, county-level habitancy, health insurance provider, timed current procedural terminology codes, and location for postoperative PT encounters within a single institution. RESULTS: Black or African American children (P = 0.002), children living in large central metro areas (P = 0.033), and children with public insurance (P ≤ 0.001) were significantly less likely to receive SDR. Children undergoing SDR do not achieve the recommended dose of PT after hospital discharge. CONCLUSION: SDR is not equally accessed by patient populations, and postoperative PT frequency is below current recommendations throughout the rehabilitation process. Future studies need to investigate why these disparities exist and what prevents children from meeting the clinically recommended dose of postoperative PT after SDR.

Comparison of Gross Motor Outcomes Between Children With Cerebral Palsy From Appalachian and Non-Appalachian Counties.

PURPOSE: This study evaluated gross motor outcomes between children with cerebral palsy from non-Appalachian and Appalachian counties in the United States. METHODS: For this retrospective, matched-case controlled study, data were sourced from electronic medical record and compared between groups. Groups were matched by age and Gross Motor Function Classification System (GMFCS) level. RESULTS: Children from Appalachian counties had significantly higher Gross Motor Function Measure, 66 (GMFM-66) scores and had a cerebral palsy diagnosis reported in the electronic medical record significantly later compared with children from non-Appalachian counties, controlling for age and GMFCS level. CONCLUSION: Although it has been documented that families and children from Appalachian counties have poorer overall health outcomes, motor development may not be affected. Our study found that children with cerebral palsy from Appalachian counties scored significantly higher on the GMFM-66 across GMFCS levels.

Daily Outpatient Physical Therapy for a Toddler With a Neurodegenerative Disease: A Case Report.

PURPOSE: This case report highlights the potential value of delivering a high-dose physical therapy (PT) intervention for a child with a neurodegenerative disease. We include developmental outcomes for a 23-month-old toddler with biallelic TBCD gene mutations following daily outpatient PT. SUMMARY OF KEY POINTS: The child had clinical improvements in gross and fine motor, cognition, expressive and receptive language, socioemotional, and adaptive behavior function as determined through Goal Attainment Scaling, Gross Motor Function Measure, and Bayley Scales of Infant and Toddler Development following daily PT intervention. STATEMENT OF CONCLUSION AND RECOMMENDATIONS FOR CLINICAL PRACTICE: High-dose outpatient PT may be beneficial for a child with a neurodegenerative disease at some time frames. In selected cases, if the neurodegenerative disease slowly progresses, high-dose PT may be a treatment option to promote motor change.

Rapid Implementation of Telerehabilitation for Pediatric Patients During Covid-19.

The COVID-19 pandemic necessitated a sudden limitation of in-person outpatient occupational and physical therapy services for most patients at a large, multisite pediatric hospital located in the Midwest, United States. To ensure patient and staff safety, the hospital rapidly shifted to deliver most of these services via telerehabilitation. The purposes of this study were to (1) describe the rapid implementation of telerehabilitation during the COVID-19 pandemic, (2) describe the demographic characteristics of patients who continued in-person services and those who received telerehabilitation, and (3) evaluate the therapists' perceptions of telerehabilitation for physical and occupational therapy. Most of the children (83.4% of n=1352) received telerehabilitation services. A family was more likely to choose to continue in-person visits if their child was <1-year-old, had a diagnosis of torticollis, received serial casting, or was post-surgical. Occupational and physical therapy therapists (n=9) completed surveys to discern their perceptions of the acceptability of telerehabilitation, with most reporting that telerehabilitation was as effective as in-person care.

Single-centre parental survey of paediatric rehabilitation services for children with cerebral palsy.

Cerebral palsy (CP) is the most common childhood motor disability. The dose of usual care for rehabilitation therapies is unknown. The purpose of this study was to describe current dosage of rehabilitation services for children with CP recruited from a paediatric hospital system in the USA. 96 children with CP were included in this cross-sectional survey. Parents reported frequency, intensity, time and type of therapy services. Weekly frequency was the most common. Children with CP received 0.9-1.2 hours/month of each discipline in the educational setting and 1.5-2.0 hours/month in the clinical setting, lower than the recommendations for improvements in motor skills.

Job role and stress influence student movement during postpartum haemorrhage simulation: an exploratory study.

Introduction: Postpartum haemorrhage is the leading cause of maternal death. Healthcare simulations are an educational tool to prepare students for infrequent high-risk emergencies without risking patient safety. Efficiency of movement in the simulation environment is important to minimize the risk of medical error. The purpose of this study was to quantify the movement behaviours of the participants in the simulation and evaluate the relationship between perceived stress and movement. Methods: N=30 students participated in 10 high-fidelity medical simulations using an adult patient simulator experiencing a postpartum haemorrhage. The participants completed the State-Trait Anxiety Inventory prior to the simulation to measure perceived stress. Physical movement behaviours included walking around the simulation, time spent at bedside, arm movements, movements without purpose, looking at charts/vitals and total movement. Results: Midwife (MW) students spent significantly more time walking (p=0.004) and looking at charts/vitals (p=<0.001) and significantly less time at bedside (p=<0.001) compared to obstetric (OB) students. The MW students demonstrated significantly more total movements compared to the OB students (p=<0.001). There was a significant, moderate, positive relationship between perceived stress and total movement during the simulation for the MW group (r=0.50, p=0.05). There was a trend for a moderate, positive relationship between perceived stress and total movement during the simulation for the OB group (r=0.46, p=0.10). Conclusions: Physical movement during a simulation varies by job role and is influenced by perceived stress. Improved understanding of physical movement in the simulation environment can improve feedback, training and environmental set-up.

Feasibility and Acceptability of Clinical Pediatric Telerehabilitation Services.

OBJECTIVE: Telerehabilitation has long been recognized as a promising means of providing pediatric services; however, significant barriers such as cost, payor reimbursement, and access prevented widespread use. The advent of the COVID-19 pandemic necessitated rapid adoption of telerehabilitation into clinical practice to provide access to care while maintaining social distancing. The purpose of this study is to present clinical data on the feasibility and acceptability of speech-language pathology, developmental occupational and physical therapies, and sports and orthopedic therapies telerehabilitation delivered in a pediatric hospital setting. METHODS: Telerehabilitation services were rapidly implemented in three stages: building the foundation, implementing, and refining this service delivery model. Paper patient satisfaction surveys were administered as part of ongoing quality improvement efforts throughout 2019 and were adapted for online administration in 2020 for telerehabilitation patients. Outpatient visit counts by type (in-person, phone, and video) were extracted from the electronic medical record using data warehousing techniques. RESULTS: Historical patient satisfaction rates from 2019 indicated high patient satisfaction (98.97% positive responses); these results were maintained for telerehabilitation visits (97.73%), indicating that families found telerehabilitation services acceptable. Patient volume returned to 73.5% of pre-pandemic volume after the implementation of telerehabilitation services. CONCLUSIONS: Pediatric telerehabilitation is feasible to provide in clinical settings, and the services are acceptable to patient families. Future work is needed to evaluate the impact of telerehabilitation services on patient care and applications for ongoing use of this delivery model.