Angela Rosenberg

Parental and environmental factors associated with physical activity among children participating in an active video game.

Purpose: Parental and intervention-specific environmental supports were examined as potential reinforcers for physical activity and use of a video game, Dance Dance Revolution (DDR), among a cohort of 7- to 8-year-old children. Methods: Sixty children were randomized to an intervention (n = 40) or a control (n = 20) group. Physical activity was measured with accelerometry and DDR logs. Parental support for their child’s physical activity was assessed via a questionnaire. DDR-specific environmental supports were captured on an environmental home screen and the DDR log. Results: At baseline, the absence of other video games and parent DDR participation was associated with child participation in DDR. At follow-up, DDR participation of siblings and friends was associated with child participation in DDR. Conclusion: The primary findings of this study suggest that parental and peer participation in DDR may play a role in children’s initial and sustained participation in DDR.

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.

Promoting community recreation and leisure.

Purpose The aim of this study was to investigate the nature and level of involvement a cross section of pediatric physical therapists (PTs) and pediatric occupational therapists (OTs) have achieved in promoting community recreation and leisure participation for their clients with disabilities. Method Using the current Internal Classification of Functioning and Disability, a hierarchy of skills required to promote community recreation and leisure was constructed and a survey was developed based on items contained in the hierarchy. Items represented three potential types of barriers to participation in community recreation and leisure for individuals with disabilities: (1) physical, (2) social, and (3) resource. One hundred fifty-two therapists were surveyed regarding their knowledge and awareness of potential barriers to their clients’ participation in community recreation and leisure and were asked questions related to promotion of recreation and leisure to their pediatric clients. Results Eighty-two surveys were completed and returned. Data revealed that therapists were practicing below an “optimal” level regarding the promotion of recreation and leisure for their clients with disabilities. No significant differences were found between PTs and OTs other than a slightly greater tendency for PTs to consider cost as a barrier to client participation in recreation and leisure pursuits. Conclusions More research is indicated to establish the factors contributing to what may be inadequate promotion of community recreation and leisure participation among pediatric therapists.

The UNC-CH MCH Leadership Training Consortium: Building the Capacity to Develop Interdisciplinary MCH Leaders

This article describes the UNC-CH MCH Leadership Consortium, a collaboration among five MCHB-funded training programs, and delineates the evolution of the leadership curriculum developed by the Consortium to cultivate interdisciplinary MCH leaders. In response to a suggestion by the MCHB, five MCHB-funded training programs—nutrition, pediatric dentistry, social work, LEND, and public health—created a consortium with four goals shared by these diverse MCH disciplines: (1) train MCH professionals for field leadership; (2) address the special health and social needs of women, infants, children and adolescents, with emphasis on a public health population-based approach; (3) foster interdisciplinary practice; and (4) assure competencies, such as family-centered and culturally competent practice, needed to serve effectively the MCH population. The consortium meets monthly. Its primary task to date has been to create a leadership curriculum for 20–30 master’s, doctoral, and post-doctoral trainees to understand how to leverage personal leadership styles to make groups more effective, develop conflict/facilitation skills, and identify and enhance family-centered and culturally competent organizations. What began as an effort merely to understand shared interests around leadership development has evolved into an elaborate curriculum to address many MCH leadership competencies. The collaboration has also stimulated creative interdisciplinary research and practice opportunities for MCH trainees and faculty. MCHB-funded training programs should make a commitment to collaborate around developing leadership competencies that are shared across disciplines in order to enhance interdisciplinary leadership.

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.

Gross and fine motor skills of children with Hurler syndrome (MPS-IH) post umbilical cord blood transplantation: A case series report

Purpose: Recent advancements in medical treatment of Hurler syndrome have resulted in longer life expectancies and a greater need for therapeutic services. The purpose of this case series is to provide recommendations for assessing children with Hurler syndrome after umbilical cord blood transplant (UCBT). Clinical descriptions: Two children with Hurler syndrome were seen for longitudinal assessments following an UCBT for Hurler syndrome. Methods: The raw scores and percentage of fine and gross motor items each child completed on the Motor Scale of the Bayley Scales of Infant Development II (BSID-II) were reviewed. Results: Both children gained new motor skills with each successive motor assessment. Both children were able to complete a higher percentage of fine motor skills than gross motor skills in the most advanced item set assessed. Discussion: The children presented in these two case reports both had better fine motor skills than gross motor skills, which inflated their standard scores on the BSID-II. Clinicians assessing children with Hurler syndrome should use standardized assessments that allow for differentiation of fine and gross motor skills to prevent this situation.

Temporal and Spatial Gait Characteristics of Children With Hurler Syndrome After Umbilical Cord Blood Transplantation

Background and Purpose: Recent medical advances are increasing the life expectancy of children with Hurler syndrome; however, little is known about the motor abilities of children who have received these medical interventions. The purpose of this study was to describe the temporal and spatial gait parameters of children with Hurler syndrome following umbilical cord blood transplantation (UCBT) in reference to gait parameters of children with typical development. Subjects: The group with Hurler syndrome consisted of 18 children between 19.6 and 96.8 months of age who were examined 1 to 4 times between 2.9 and 72.2 months after UCBT. Four hundred thirty-eight children with typical development between the ages of 14.4 and 131.8 months served as a comparison group. Methods: Temporal and spatial gait parameters were assessed using a GAITRite electronic walkway. Step length, gait speed, and cadence were normalized for body stature. Results: Children with Hurler syndrome had slower gait speeds and shorter step lengths than children with typical development at 2 and 3 years of age. Time since transplantation was a predictor of gait speed and step length. Discussion and Conclusions: Children with Hurler syndrome after UCBT were delayed in maturation of temporal and spatial gait parameters.

Pediatric physical therapists' consultation with a community dance instructor: a case report.

Purpose: This case report contributes to defining the role of pediatric physical therapists in promoting recreation for pediatric clients by describing the consultation methods employed by three pediatric physical therapists in a consultative partnership with a community dance instructor of children with disabilities. Methods: Consultants provided written and verbal recommendations intended to address the dance instructor’s identified needs, enhance instructor technique, and improve quality of child participation. Instructor interviews, written surveys, observation of classes, and a consultation logbook were used to assess consultation services. Results: Fifty-four percent of the total 24 consultation recommendations provided to the instructor were implemented at least once. Implementation of recommendations resulted in enhanced class structure and improved child participation, and the dance instructor reported high satisfaction with consultation services. Conclusions: Pediatric physical therapists have a range of valuable expertise to offer community recreation and leisure activity (RLA) providers, including expertise in physical, social, behavioral, system-level, and other parameters related to RLA participation.

The Relationship between Interprofessional Leadership Education and Interprofessional Practice: How Intensive Personal Leadership Education Makes a Difference

OBjECTIvEs To study the effects of the University of North Carolina at Chapel Hill (UNC) Interdisciplinary Leadership Development Program (ILDP) on interprofessional attitudes, beliefs, and use of skills. ILDP is a collaboration among five campus-based U.S. Maternal and Child Health Bureau-funded training programs. These programs included Leadership Education in Neurodevelopmental and Related Disabilities (LEND), Nutrition, Pediatric Dentistry, Public Health, and Social Work. METHODs Using a post-test design, participants in the ILDP from the five training programs were contacted to complete a web-based survey. LEND and Public Health graduates who had not participated in the ILDP were recruited for comparison. Using scales and open-ended questions, we asked graduates to rate the influence of ILDP on their attitudes/beliefs about interprofessional practice, to report the frequency of use of interdisciplinary skills, and to describe those influences on the use of skills in some detail. REsULTs The 208 respondents represented 60% of the graduates from 2001 through 2008. Graduates reported that the yearlong Interdisciplinary Leadership Development Program, a supplement to conventional discipline-based training influenced their interprofessional attitudes, beliefs, and the use of interprofessional skills. In particular, a 3-day Leadership Intensive workshop enhanced graduates’ understanding of individual leadership practices and heightened their appreciation of the assets and challenges of others working in groups. COnCLUsIOns With increasing focus on interprofessional health teams, many evaluations of training neither describe nor measure explicitly the elements of training that enable students to develop interprofessional attitudes, beliefs, and skills. In an evaluation that demonstrated these outcomes, we have described the key role of intentional, personal leadership training in producing these outcomes. Interprofessional training programs should be expected to provide logic models for the relationship between training and the desired outcomes. Received: 08/24/2014 Accepted: 02/08/2015 Published: 04/08/2015