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.

Implementing Parent Coaching in Hospital-Based Pediatric Occupational Therapy: A Multisite Quality Improvement Project.

IMPORTANCE: Parent coaching (PC) is a best practice for young children with, or at high risk for, cerebral palsy (CP). Occupational therapy practitioners in outpatient settings encounter barriers to implementing PC. OBJECTIVE: To increase the documented use of PC in outpatient occupational therapy visits for children younger than age 2 yr with, or at high risk for, CP from 0% to 80%. DESIGN: Multicenter quality improvement (QI) initiative with a time-series design. SETTING: Three pediatric tertiary-care institutions, each with multiple outpatient occupational therapy clinics. PARTICIPANTS: Practitioners in the outpatient clinics and patients <2 yr old with, or at high risk for, cerebral palsy. INTERVENTION: Plan-do-study-act cycles included interventions packaged as a toolkit: education sessions, quick references, electronic medical record (EMR) supports, and site-specific strategies. OUTCOMES AND MEASURES: The primary outcome measure was the use of PC in outpatient sessions. Process measures included pre- and posteducation practitioner knowledge scores and an EMR checklist. Balancing measures (ensuring that changes do not cause problems in other areas) of parent satisfaction/experience and practitioner productivity were measured pre- and postintervention. RESULTS: The primary outcome measure goal (80% documented use of PC in sessions) was attained in the seventh month of the study, sustained for 4 mo, and settled at 79.1% for the remaining 6 mo. Practitioner knowledge scores increased from 83.1% to 87.9% after initial education sessions, t[56] = 3.289, p = .001. Parent satisfaction/experience and practitioner productivity scores did not change. CONCLUSIONS AND RELEVANCE: QI methodology can support PC implementation in pediatric outpatient practice. What This Article Adds: This multisite QI initiative shows that outpatient occupational therapy practitioners can implement PC as a best practice with the use of a toolkit. Results suggest that education alone does not result in changes to practitioner behavior and that QI methods can help when implementing best practices in a clinical setting.

Pediatric Outpatient Occupational Therapy: Transitioning From In-Person Services to Telehealth.

The COVID-19 pandemic necessitated rapid adoption of telehealth for outpatient pediatric occupational therapy practice. The dose of therapy may have varied across diagnostic and geographical groups despite efforts to ensure access for all patients. The objective of the study was to describe the visit length of outpatient pediatric occupational therapy practice for three diagnostic groups at one institution both during and prior to the COVID-19 pandemic. Retrospective review of electronic health records for two time periods using both practitioner-entered and telecommunications data. Data were analyzed using descriptive statistics and generalized linear mixed model. Prior to the pandemic, average treatment length did not vary by primary diagnosis. During the pandemic, average visit length varied by primary diagnosis, with feeding disorder (FD) visits significantly shorter than cerebral palsy (CP) and autism spectrum disorder (ASD) visits. During the pandemic, visit length was associated with rurality for the whole sample and for patients with ASD and CP, but not FD. Patients with FD may have been seen for shorter durations during telehealth visits. The technology gap may affect services for patients living in rural communities.

Early Developmental Trends in High-Risk Neonates Later Diagnosed With Autism Spectrum Disorder.

PURPOSE: We hypothesized that clinical data from a neonatal intensive care unit (NICU) infant developmental follow-up clinic would identify early manifestations of autism spectrum disorder (ASD). METHODS: One hundred forty-four infants were identified; 72 later diagnosed with ASD and 72 controls. Retrospective chart review provided data from the Test of Infant Motor Performance (TIMP) and the Bayley Scales of Infant and Toddler Development, third edition (Bayley-III), between 8 and 26 months of age. RESULTS: Between-group comparisons indicated no significant group difference in TIMP scores; however, Bayley-III scaled scores differed between the groups at 2 administration times. The within-group Bayley-III change scores declined significantly more for the ASD group in cognitive and communication subtests. CONCLUSION: High-risk neonates, due to prematurity or morbidity, later diagnosed with ASD demonstrated statistically significant differences, including a more precipitous drop in Bayley-III scores over time. Early, longitudinal developmental surveillance for neonates at risk of ASD is critical. What this adds to the evidence: Early identification of ASD is critical to optimize developmental outcomes in young children, including infants born prematurely or with neonatal morbidity, who are perceived to have an increased risk for ASD. Despite these findings, minimal research has been conducted to evaluate the utility of commonly administered norm-referenced developmental surveillance instruments to identify possible early signs of ASD in this high-risk population due to prematurity or neonatal morbidity and not familial association. The present study analyzed retrospectively collected clinical data from a NICU developmental follow-up clinic for 144 infants, 72 of which were later diagnosed with ASD and 72 sex- and gestational age-matched controls. Results demonstrated statistically significant poorer Bayley-III outcomes for the ASD group compared with controls at 2 different study time points, including a more precipitous drop in Bayley-III scaled scores over time. This study highlights the importance of early and longitudinal developmental surveillance for high-risk neonates at risk of ASD.

Development and Refinement of the American Occupational Therapy Association's Knowledge Translation Toolkit.

IMPORTANCE: Occupational therapy practitioners are expected to translate promising discoveries from empirical research into routine practice with their clients. However, complex barriers can influence practitioners' knowledge translation (KT) efforts, leading the American Occupational Therapy Association's Evidence-Based Practice (EBP) group to develop the KT Toolkit tailored to the perceived needs of occupational therapists and occupational therapy assistants. OBJECTIVE: To identify common barriers to implementing EBPs and potential strategies to support EBP uptake. DESIGN: Cross-sectional survey. SETTING: United States. PARTICIPANTS: Occupational therapy practitioners. OUTCOMES AND MEASURES: Data underwent descriptive and directed content analysis, the latter of which was guided by the Consolidated Framework for Implementation Research. RESULTS: Occupational therapy survey respondents (N = 818) identified common EBP implementation barriers (e.g., lack of time and resources, difficulty understanding research findings). Initial KT Toolkit content was developed to address these barriers and included resources for searching for, analyzing, and applying evidence in practice. CONCLUSIONS AND RELEVANCE: Survey findings have informed the development of the KT Toolkit, which includes resources designed to support occupational therapy practitioners' EBP implementation efforts. This KT Toolkit is available at AOTA.org and will be continuously revised and updated on an ongoing basis. What This Article Adds: Several barriers limit the extent to which occupational therapy practitioners can implement evidence with their client populations. The KT Toolkit is directly informed by practitioner input and provides resources to support practitioners in their efforts to translate knowledge into real-world practice.

Randomized trial of a self-administered parenting intervention for selective eating in young children.

Selective eating is a common childhood feeding problem associated with family stress and micronutrient deficiencies. While there are empirically-supported behavioral strategies for addressing selective eating, there are significant systems-level barriers to implementing them. The aim of this study was to develop and test a self-administered intervention for parents of children with selective eating. Participants were 156 parents of children with selective eating ages 18 months-6 years who were randomly assigned to either the handout + video condition (8-module video intervention and detailed handout) or handout condition (detailed handout only). Outcome measures were administered pre-intervention and 4 weeks post-intervention. Only 23 % of participants in the handouts plus video condition played more than one video module. Both groups had significant decreases in maladaptive mealtime parenting practices, undesired child mealtime behaviors, and number of foods offered. No significant effect of study condition was found on the outcome measures. Further research is needed to determine how to encourage engagement of parents with self-administered intervention materials.

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.

A Systematic Review of Assessments and Interventions for Chronic Pain in Young Children With or at High Risk for Cerebral Palsy.

BACKGROUND: Pain is common in children with cerebral palsy. The purpose of this systematic review was to evaluate the evidence regarding assessments and interventions for chronic pain in children aged ≤2 years with or at high risk for cerebral palsy. METHODS: A comprehensive literature search was performed. Included articles were screened using PRISMA guidelines and quality of evidence was reviewed using best-evidence tools by independent reviewers. Using social media channels, an online survey was conducted to elicit parent preferences. RESULTS: Six articles met criteria. Parent perception was an assessment option. Three pharmacologic interventions (gabapentin, medical cannabis, botulinum toxin type A) and 1 nonpharmacologic intervention were identified. Parent survey report parent-comfort and other nonpharmacologic interventions ranked as most preferable. CONCLUSION: A conditional GRADE recommendation was in favor of parent report for pain assessment. Clinical trials are sorely needed because of the lack of evidence for safety and efficacy of pharmacologic interventions.

Assessments and Interventions for Spasticity in Infants With or at High Risk for Cerebral Palsy: A Systematic Review.

BACKGROUND: The majority of children with cerebral palsy develop spasticity, which interferes with motor development, function, and participation. This systematic review appraised current evidence regarding assessments and interventions for spasticity in children aged less than two years with or at high risk for cerebral palsy and integrated findings with parent preferences. METHODS: Five databases (CINAHL, EMBASE, OVID/Medline, SCOPUS, and PsycINFO) were searched. Included articles were screened using PRISMA guidelines. Quality of the evidence was reviewed by two independent reviewers using Quality Assessment of Diagnostic Accuracy Studies, second edition (QUADAS-2), the RTI Item Bank on Risk of Bias and Precision of Observational Studies (RTI), or The Cochrane Collaboration's tool for assessing risk of bias in randomized trials (RoB). An online survey was conducted regarding parent preferences through social media channels. RESULTS: Twelve articles met inclusion criteria. No high-quality assessment tool emerged for this population. Six interventions (botulinum toxin-A, orthotic use, radial extracorporeal shock wave therapy, erythropoietic stimulating agents, medical cannabis, and homeopathy) were identified. There was low-quality evidence for the use of botulinum toxin-A and radial extracorporeal shock wave therapy to improve short-term outcomes. Survey respondents indicated that spasticity assessments and interventions are highly valued, with nonpharmacologic interventions ranked most preferably. CONCLUSIONS: Further research is needed to validate assessments for spasticity in children younger than two years. Conditional recommendations can be made for botulinum toxin-A and radial extracorporeal shock wave therapy based on low level of evidence to reduce spasticity in children aged less than two years.

Assessments and Interventions for Sleep Disorders in Infants With or at High Risk for Cerebral Palsy: A Systematic Review.

BACKGROUND: Children with cerebral palsy (CP) are five times more likely than typically developing children to have sleep problems, resulting in adverse outcomes for both children and their families. The purpose of this systematic review was to gather current evidence regarding assessments and interventions for sleep in children under age 2 years with or at high risk for CP and integrate these findings with parent preferences. METHODS: Five databases (CINAHL, EMBASE, OVID/Medline, SCOPUS, and PsycINFO) were searched. Included articles were screened using preferred reporting items for systematic reviews and meta-analyses guidelines, and quality of the evidence was reviewed using best evidence tools by two independent reviewers at minimum. An online survey was conducted regarding parent preferences through social media channels. RESULTS: Eleven articles met inclusion criteria. Polysomnography emerged as the only high-quality assessment for the population. Three interventions (medical cannabis, surgical interventions, and auditory, tactile, visual, and vestibular stimulations) were identified; however, each only had one study of effectiveness. The quality of evidence for polysomnography was moderate, while the quality and quantity of the evidence regarding interventions was low. Survey respondents indicated that sleep assessments and interventions are highly valued, with caregiver-provided interventions ranked as the most preferable. CONCLUSIONS: Further research is needed to validate affordable and feasible sleep assessments compared to polysomnography as the reference standard. In the absence of diagnosis-specific evidence of safety and efficacy of sleep interventions specific to young children with CP, it is conditionally recommended that clinicians follow guidelines for safe sleep interventions for typically developing children.

Interventions Within the Scope of Occupational Therapy Practice to Improve Motor Performance for Children Ages 0-5 Years: A Systematic Review.

IMPORTANCE: Occupational therapy practitioners need updated information about which interventions may improve motor skills for young children. OBJECTIVE: To identify the effectiveness of occupational therapy interventions to promote motor development and prevent delay for children ages 0-5 yr. DATA SOURCES: Six databases (CINAHL, MEDLINE, PsycINFO, ERIC, Cochrane, and OTseeker) were searched for articles published from January 2010 to March 2017. STUDY SELECTION AND DATA COLLECTION: The search yielded 4,488 articles that were reviewed for inclusion. Fifty-six studies were entered into both evidence and risk-of-bias tables. Included studies used Level I-III designs, were within occupational therapy's scope of practice, included participants with a mean age younger than 6 yr, and addressed motor skills. FINDINGS: Three intervention themes emerged: early intervention for children younger than age 3 yr, interventions for preschool children ages 3-5 yr, and interventions for children with or at risk for cerebral palsy. CONCLUSIONS AND RELEVANCE: Occupational therapy practitioners should consider use of interventions with moderate or strong evidence as described in this review. Limitations include high risk of bias and limited evidence for several interventions. WHAT THIS ARTICLE ADDS: This article provides occupational therapy practitioners with updated information on evidence-based practices for children age 5 and younger who have motor delays.

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.

Scoping Review of Self-Advocacy Education Interventions to Improve Care.

Self-advocacy is a client's ability to represent one's interests when managing disease or disability. Self-advocacy may increase one's ability to seek, evaluate, and use information to promote health, yet little is known about the role of occupational therapy in promoting self-advocacy. This scoping review aims to identify interventions within occupational therapists' scope of practice to improve self-advocacy. A literature search was conducted through Academic Search Complete to identify interventions within the scope of occupational therapy that promote self-advocacy. All levels of evidence were included, and articles were reviewed for inclusion by two authors. Included articles were charted for level of evidence, objectives, participants, and results. Fourteen articles met the criteria. Interventions included interactive multimedia interventions, peer-led educational groups, writing interventions, job counseling and advocacy, and disease-specific advocacy programs. Occupational therapists are well-equipped to intervene and promote self-advocacy through workplace modification, utilizing assistive technologies, and facilitating peer-led educational groups.

Using a Revised Protein-Sparing Modified Fast (rPSMF) for Children and Adolescents with Severe Obesity: A Pilot Study.

Treatment options are limited for children and adolescents with severe obesity. One alternative treatment is the protein-sparing modified fast (PSMF), a low-carbohydrate, high-protein diet that can result in substantial weight loss. The aim of the study is to evaluate the adherence and efficacy of a revised PSMF (rPSMF) for severe obesity in a pediatric tertiary care weight-management program. The rPSMF with 1200-1800 calories, 40-60 g of carbohydrate/day and 1.2-1.5 g protein/kg of ideal bodyweight was implemented over 12 months. Twenty-one participants enrolled in the study. Mean age 16.2 ± 1.4 years, females (76.2%) and mean weight at baseline was 119 ± 19.9 kg. Regardless of adherence to the rPSMF, the mean weight change at 1 month was -3.7 ± 3.5 kg, (range -13.5 kg to 0.9 kg); at 3 months was -5.5 ± 5.1 kg, (range -19.3 kg to 1.8 kg) and at 6 months was -4.7 ± 6.6 kg, (range -18.3 kg to 8.6 kg). At 12 months, the mean weight change was -1.3 ± 10.6 kg (range -17.7 kg to 14.8 kg). Parent and child-reported physical and psychosocial quality of life (HRQOL) improved. Despite limited adherence, the rPSMF diet resulted in clinically significant weight loss and improved HRQOL for children and adolescents with severe obesity.

Development of a tool to measure the number of foods and beverages consumed by children using National Health and Nutrition Examination Survey (NHANES) FFQ data.

OBJECTIVE: There is currently no standard, objective definition of selective eating. This is partially because normative values for the number of different foods eaten by US children have not been established. The present study objectives were to: (i) perform exploratory analysis on the number of different foods, beverages, and total foods and beverages consumed by US children aged 2-18 years over a year's time, and the types of foods consumed by those in the lowest 2·5th percentile; and (ii) determine whether those values differ according to demographic variables and weight status. DESIGN: Secondary analysis of cross-sectional FFQ data. Differences in number of foods, beverages, and total foods and beverages were analysed using one-way ANOVA. SETTING: National Health and Nutrition Examination Survey (NHANES) for the years 2003-2006. SUBJECTS: Non-institutionalized US children aged 2-18 years. RESULTS: The mean number of different foods and beverages consumed across the sample was 83·2. There were no significant differences by gender, BMI, race or food security categories. There was a difference in beverage consumption by age category, with children aged 12-18 years consuming a significantly higher number of different beverages compared with each of the other two age categories (i.e. 2-5 years and 6-11 years). CONCLUSIONS: Normative values for the number of foods and drinks reported as consumed by children over the past 12 months may be a useful measure for researchers. Future research validating this measure is needed before cut-off values can be used to develop a definition of selective eating.

Feasibility of Pediatric Game-Based Neurorehabilitation Using Telehealth Technologies: A Case Report.

This case report is the first in a series of reports designed to determine the feasibility of implementing game-based neurorehabilitation using telehealth technologies (GbN+TT) for children with cerebral palsy, evaluate the responsiveness of relevant outcome measures to changes in motor impairment and activity participation after intervention, and identify technological challenges associated with implementation of GbN+TT. The participant completed more than 56 hr of game-based neurorehabilitation over 8 wk using the Timocco platform in his home. The primary measures of motor impairment (Bruininks-Oseretsky Test of Motor Proficiency, Second Edition) and function (Pediatric Motor Activity Log) were both sensitive to change. Results indicate that it is feasible to administer GbN+TT to a child with cerebral palsy and monitor outcomes using standardized assessments.

Behavioral and Physiological Factors Associated With Selective Eating in Children With Autism Spectrum Disorder.

Selective eating is common in children with autism spectrum disorder (ASD), but it is not yet well understood. The objectives of this study were to examine a new definition of selective eating, compare behavioral measures between children with ASD and selective eating and those without selective eating, and determine relationships among behavioral measures and measures of selective eating. Participants were assigned to groups on the basis of number of foods eaten compared with a population-based sample. Results of one-way multivariate analysis of variance indicated no overall effect of group for challenging behaviors, sensory reactivity, or repetitive behaviors. Between-participant tests indicated that scores for compulsive behaviors were significantly lower (p = .036) for the selective eating group. Correlations were moderately strong among variables relating to food intake and behavioral variables, but were not significant between selective eating and behavioral variables. Further research is needed to validate the definition of selective eating and to identify targets for intervention.

Effectiveness of Interventions to Improve Social Participation, Play, Leisure, and Restricted and Repetitive Behaviors in People With Autism Spectrum Disorder: A Systematic Review.

People with autism spectrum disorder (ASD) commonly experience difficulties with social participation, play, and leisure along with restricted and repetitive behaviors that can interfere with occupational performance. The objective of this systematic review was to evaluate current evidence for interventions within the occupational therapy scope of practice that address these difficulties. Strong evidence was found that social skills groups, the Picture Exchange Communication System, joint attention interventions, and parent-mediated strategies can improve social participation. The findings were less conclusive for interventions to improve play and leisure performance and to decrease restricted and repetitive behaviors, but several strategies showed promise with moderately strong supporting evidence. Occupational therapists should be guided by evidence when considering interventions to improve social participation, play, leisure, and restricted and repetitive behaviors in people with ASD. Additional research using more robust scientific methods is needed for many of the currently available strategies.

Retrospective Analysis of Motor Development in Infants at High and Low Risk for Autism Spectrum Disorder.

OBJECTIVE: To measure upper-extremity and gross motor skill development in infants with and without risk factors for autism spectrum disorder (ASD). METHOD: Data were coded retrospectively from 39 infants who participated in longitudinal structured early developmental assessments. Twenty-five infants were at high risk for ASD, and the remaining 14 infants were classified as low risk. Upper-extremity and motor skill development were coded at ages 2, 4, and 6 mo. Five infants went on to receive an ASD diagnosis at age 2-4 yr. RESULTS: Infants at high risk for ASD demonstrated fewer midline behaviors with the upper extremities and delayed motor skill development than the low-risk group. Differences in motor skills were most apparent at age 4 mo. CONCLUSION: Early monitoring for motor delay in infants at high risk for ASD is warranted. Midline control and play with the upper extremities and overall motor skill development are possible assessment and therapeutic targets.

Musculoskeletal Discomfort, Physical Demand, and Caregiving Activities in Informal Caregivers.

OBJECTIVES: To characterize the burden of care and musculoskeletal discomfort associated with caring for adults with chronic physical disability among informal caregivers and to describe the most physically demanding caregiving activities and contributing factors, as perceived by informal caregivers of adults with physical disabilities. METHODS: A mixed methods approach was used for the study. Forty-six informal caregivers of adults with physical disability participated. RESULTS: Most caregivers were classified as "high burden" caregivers. They reported high levels of physical strain and musculoskeletal discomfort. Caregivers identified several activities related to mobility and self-care as the most physically demanding. Factors affecting physical demand included caregiver and care-recipient characteristics, activity requirements, and the physical environment. CONCLUSION: Interventions that target high-demand caregiving activities, including all three aspects of caregiving activity performance, are necessary to support adults with disabilities in the home and their caregivers.