Stacey C. Dusing

Unmet Need for Therapy Services, Assistive Devices, and Related Services: Data From the National Survey of Children With Special Health Care Needs

OBJECTIVE To estimate the prevalence of unmet needs for therapy services, vision and hearing care or aids, mobility aids, and communication aids and to investigate the association between predisposing, enabling, need, and environmental factors and unmet needs. METHODS Using the National Survey of Children with Special Health Care Needs, we generated national prevalence estimates and performed bivariate and logistic analyses, accounting for the complex survey design. RESULTS Nationally, the prevalence of unmet needs ranged from 5.8% among children with special health care needs (CSHCN) with a reported need for vision care or glasses to 24.7% among CSHCN with a reported need for communication aids. In logit analyses, CSHCN without insurance coverage were significantly more likely to have a reported unmet need for therapy services (adjusted odds ratio [OR]: 2.08, confidence interval [CI]: 1.39-3.12), vision care or glasses (OR: 3.94, CI: 2.64-5.86), and mobility aids (OR: 5.17, CI: 1.86-14.37). Children in families at or below 100% of the federal poverty level were significantly more likely to have a reported unmet need for vision care or glasses (OR: 4.51, CI: 2.86-7.12) and hearing aids or hearing care (OR: 3.61, CI: 1.70-7.65). For each of the services studied, more-severely limited children were significantly more likely to have an unmet need reported. CONCLUSION Our findings demonstrate that a minority of CSHCN have unmet needs for therapy services, assistive devices, and related services. Parents of children with more-severe ability limitations were more likely to report having unmet needs. Our findings highlight the importance of insurance coverage in ensuring access to therapy services, assistive devices, and related services.

Grounding Early Intervention: Physical Therapy Cannot Just Be About Motor Skills Anymore

This perspective article provides support for 4 interrelated tenets: grounded perceptual-motor experience within cultural and social contexts forms cognition; exploration through early behaviors, such as object interaction, sitting, and locomotion, broadly facilitates development; infants and children with limited exploration are at risk for global developmental impairments; and early interventions targeting exploratory behaviors may be feasible and effective at advancing a range of abilities across developmental domains and time. These tenets emphasize that through the promotion of early perceptual-motor behaviors, broader, more global developmental advancements can be facilitated and future delays can be minimized across domains for infants and children with special needs. Researchers, educators, and clinicians should build on these tenets to further demonstrate the effectiveness of targeted early interventions. The goals of these interventions should be not only to advance targeted perceptual-motor skills in the moment but also to more broadly advance future abilities and meet the early intervention goal of maximizing childrens learning potential.

Variability in Postural Control During Infancy: Implications for Development, Assessment, and Intervention

Variability is commonly considered a key to typical motor development. However, multiple definitions and quantification systems have limited the clinical interpretation of variability and the translation of developmental research to assessment and intervention. The purposes of this perspective article are to highlight the importance of statistical variability and complexity in postural control during development and to describe implications for assessment and intervention during infancy and early childhood. Five tenets are proposed describing the role of variability in postural control to support movement experiences, exploration, and global development. Evidence for assessment and intervention focused on variability in postural control are introduced.

Neonatal Physical Therapy. Part II: Practice Frameworks and Evidence-Based Practice Guidelines

Purpose: (1) To outline frameworks for neonatal physical therapy based on 3 theoretical models, (2) to describe emerging literature supporting neonatal physical therapy practice, and (3) to identify evidence-based practice recommendations. Key Points: Three models are presented as a framework for neonatal practice: (1) dynamic systems theory including synactive theory and the theory of neuronal group selection, (2) the International Classification of Functioning, Disability and Health, and (3) family-centered care. Literature is summarized to support neonatal physical therapists in the areas of examination, developmental care, intervention, and parent education. Practice recommendations are offered with levels of evidence identified. Conclusions: Neonatal physical therapy practice has a theoretical and evidence-based structure, and evidence is emerging for selected clinical procedures. Continued research to expand the science of neonatal physical therapy is critical to elevate the evidence and support practice recommendations.

Infants Born Preterm Exhibit Different Patterns of Center-of-Pressure Movement Than Infants Born at Full Term

Background Infants born preterm are at risk for developmental impairments related to postural control. Objective The purpose of this study was to determine whether infants born preterm and infants born at full term differed in postural control at 1 to 3 weeks after term age. Design This study included 17 infants born preterm (mean gestational age=31.9 weeks, range=25.0–34.6) and 15 infants born at full term (mean gestational age=38.9 weeks, range=37.3–40.6). All infants were without diagnosed neurological or genetic conditions. Measurement Center-of-pressure (COP) data were recorded at 5 Hz while each infant was positioned supine on a pressure-sensitive mat in an alert behavioral state. Root mean square (RMS) displacement and approximate entropy (ApEn) were used to describe the COP movement variability in the time series. Differences between groups were identified using independent t tests. Results The COP time series were found to be deterministic, suggesting order in the time series. Infants born preterm exhibited significantly larger RMS values in the caudal-cephalic direction than infants born at full term (1.11 and 0.83 cm, respectively; t=−2.6, df=30, P=.01). However, infants born at full term had significantly larger ApEn values in the caudal-cephalic direction (1.19 and 1.11, respectively; t=2.4, df=30, P=.02). The 2 groups did not differ in RMS or ApEn values in the medial-lateral direction or the resultant. Conclusions Infants born at full term exhibited COP displacements in the caudal-cephalic direction that were smaller in amplitude, but may be considered more complex or less predictable, than those of infants born preterm. One explanation is that infants born preterm exhibited more stereotypic patterns of movement, resulting in large, but repetitive, COP excursions. A combination of linear and nonlinear measures may provide insight into the control of posture of young infants.

Parent preferences for motor development education in the neonatal intensive care unit.

Purpose: The purpose of this pilot study was to determine parents’ preferred method of receiving education on motor development of infants born preterm. Methods: This study was conducted through a pair of focus groups in which parents evaluated different educational formats and provided feedback on the clarity of the parent education intervention. Results: Parents reported that they would prefer to learn about their infant’s motor development with a combination of observation, discussion, and written material. After the parent education intervention, parents of infants born preterm were able to describe the ways they would play with their infant and answered more questions correctly on a postintervention test. Conclusions: Parents of infants who were born preterm would benefit from education using multiple approaches. The parent education intervention developed in this study is clear and well understood by parents. Further research is needed to evaluate the efficacy of this intervention.

Methods for assessing neurodevelopment in lysosomal storage diseases and related disorders: a multidisciplinary perspective

Lysosomal storage diseases and related disorders (LSRDs) are a heterogeneous group of rare diseases caused by genetic mutations that result in deficiencies of specific lysosomal enzymes. Some of these enzymes are necessary for normal development of the central and peripheral nervous systems. Because of the heterogeneity in clinical presentation and complexity of these disorders, evaluation of disease progression poses unique challenges. In recent years, recombinant enzyme replacement therapy and haematopoietic stem cell transplantation have been developed to treat some of these diseases. With the development of specific therapies and screening programmes, there is a need to systematically follow the natural course and effects of treatment in these disorders with standardized and validated tools. This review describes the limitations of currently available neurobehavioural tools in longitudinally tracking disease outcomes in patients with neurodegenerative LSRDs. A multidisciplinary team reviewed over 750 evaluations in 274 patients. These patients were found to have neurological, sensory and somatic problems that considerably influence the results of neurobehavioural testing.

Gross motor abilities in children with Hurler syndrome

Hurler syndrome is the most severe form of mucopolysaccharidosis type I. There is a paucity of literature reporting the gross motor abilities of children with untreated Hurler syndrome. The purpose of this case series is to describe the gross motor abilities of one male and three female children (mean age 11.4mo [SD 3.1]; range 9.5-16mo) diagnosed with Hurler syndrome. The children were assessed using the Peabody Developmental Motor Scales, 2nd edition. Gross motor delays were present in all four children at the time of assessment, and were most evident in locomotor abilities for three of the children. All four children had range of motion limitations at multiple joints. This case series provides evidence for early gross motor delays in this population, as well as evidence for specific gross motor abilities of children with untreated Hurler syndrome. It is recommended that children diagnosed with Hurler syndrome be referred to physical therapy services upon diagnosis and that physical therapists be part of the interdisciplinary team involved in the care of children with Hurler syndrome.

Gross Motor Development of Children With Hurler Syndrome After Umbilical Cord Blood Transplantation

Background and Purpose: Little is known about the gross motor development of children with Hurler syndrome who have undergone umbilical cord blood transplantation (UCBT). The purpose of this study was to provide a description of gross motor development in children with Hurler syndrome after UCBT. Subjects and Method: Longitudinal changes in gross motor abilities were documented on the gross motor subtests of the Peabody Developmental Motor Scales, second edition (PDMS-2) for 21 children with Hurler syndrome. Each child was assessed between 1 and 6 times after UCBT. The participants had a mean age (±SD) of 32.2±16.0 months at the time of the first assessment. The mean time (±SD) between UCBT and the first assessment was 16.2±16.5 months. Results: The participants had marked gross motor delays, with a mean gross motor quotient 2 standard deviations below the mean for children who were developing typically. The rate of development differed between the subtests of the PDMS-2. The participants gained abilities at the slowest rate on the stationary subtest and at the fastest rate on the locomotor subtest. Discussion and Conclusion: The participants had varying degrees of delay in different gross motor domains. While gaining new gross motor abilities over time, these children continued to have delays up to 48 months after UCBT. Physical therapists treating children with Hurler syndrome after UCBT should use assessment tools that will capture these differences and should individualize treatment plans accordingly. Additional research is needed to document the efficacy of physical therapy intervention with this population.

Trunk position in supine of infants born preterm and at term: an assessment using a computerized pressure mat.

Purpose: Trunk position may influence motor, cognitive, and social development during infancy and early childhood and has not been quantitatively assessed. The purpose of this study was to assess the trunk positions of infants born at term and preterm in supine using a computerized pressure mat. Methods: Trunk position was represented as a ratio of head and pelvis to trunk pressure. Eighteen healthy infants born preterm with a mean gestational age of 31.9 weeks (25.0–34.6) and fifteen healthy infants born at term with a mean gestational age of 38.9 weeks (37.3–40.6) were assessed at 38 to 43 weeks gestational age. Results: Infants born at term spent more than two-thirds of the time in either flexed or neutral trunk positions. No significant differences were found between infants born preterm and those born at term in total duration of flexion or extension or in flexion event duration. Conclusion: This study provides evidence that infants born preterm may not exhibit greater trunk extension tendencies in supine than infants born at term. Results should be interpreted with caution, however, because of the small sample size and large variability observed within the subject groups. Infants born at less than 30 weeks of gestation may demonstrate greater extension tendencies than those born at more than 30 weeks of gestation.