Christina K. Zigler

Predictors of Longitudinal Quality of Life in Juvenile Localized Scleroderma

Localized scleroderma can negatively affect childrens quality of life (QoL), but predictors of impact have not been well described. We sought to identify predictors of QoL impact in juvenile localized scleroderma patients.

Predictors of Longitudinal Quality of Life in Pediatric Localized Scleroderma

Localized scleroderma can negatively affect childrens quality of life (QoL), but predictors of impact have not been well described. We sought to identify predictors of QoL impact in juvenile localized scleroderma patients.

Reliability and Validity of the Revised Transfer Assessment Instrument

Background: Proper transfer technique is associated with improved biomechanics and decreased pain and pathology. However, many users do not use proper technique, and appropriate assessment and training are needed to address these deficits. The transfer assessment instrument (TAI) 4.0 was designed to meet those needs and improve on past versions by removing the need for clinician training, shortening administration time, and simplifying question content. Objectives: Evaluate the psychometric properties of the TAI 4.0. Methods: A convenience sample of full-time wheelchair users was scored on multiple transfers by four raters to assess interrater, intrarater, and test-retest reliability and concurrent validity of the TAI 4.0. Each user also was scored using a visual analog scale (VAS). Results: For 44 participants, the mean TAI 4.0 and VAS across all transfers were 7.58 ± 1.12 and 7.44 ± 1.78, respectively, and scores were significantly correlated (r = 0.52-0.7). VAS scores were more strongly influenced by the flight/landing and body setup phases of the transfer. There were no significant associations between TAI 4.0 score and demographics. Intraclass correlation coefficients (ICC) ranged from 0.80 to 0.85 for interrater reliability, 0.60 to 0.76 for intrarater reliability, and 0.55 to 0.76 for test-retest reliability. The minimum detectable change (MDC) for the total score ranged from 1.02 to 1.30. Conclusion: The TAI 4.0 provides reliable and valid quantitative assessment of an individuals transfer without the need for comprehensive training, as is the case with the TAI 3.0. The tool can be completed in 3 minutes (average) in a clinical setting with only a ruler and goniometer.

Poster 127: Factors Affecting Procedural Pain in Children During and Immediately After Intramuscular Botulinum Toxin Injections for Spasticity

category, there was a 50-fold difference in observed total daily dose of ITB. Conclusions: Dosing of intrathecal baclofen in patients in the pediatric population appears to be independent of their ambulation ability or movement pattern but is rather based on maximal clinical benefit of the intrathecal baclofen. There is a significant need to explore why patients require such large variances in ITB dosing. Level of Evidence: Level IV

Poster 380: Comorbidities Associated with Early Mortality in Adults with Spina Bifida

being “very relevant”. They indicated a relevance of 46 in spending clinical time with a rehabilitation specialist. Trainees who had rotated with PM&R during medical school were more likely to report a higher level of knowledge (P 1⁄4 .003) in addition to those with awareness of a PM&R department at their institution (P 1⁄4 .04). There was no significant difference in responses between oncology subspecialties. Conclusions: Physician trainees in oncologic subspecialties perceived rehabilitation as a highly relevant service; however, they expressed a low level of knowledge in defining services to patients. Despite the high prevalenceof rehabilitationat their institutions, 19%had receivededucationby a rehabilitation specialist. These findings highlight a need to increase education about rehabilitation among oncology physician trainees. Level of Evidence: Level III

Botulinum Toxin: Techniques Within Pediatric Physiatry

Intramuscular botulinum toxin injections are used for treatment of focal spasticity in children, particularly in those with a diagnosis of cerebral palsy. There are a variety of techniques used when performing botulinum toxin injections without clear standards for pediatric providers.

The Voice of the Consumer: A Survey of Veterans and Other Users of Assistive Technology

Introduction A total of 3.6 million Americans and over 250,000 veterans use wheelchairs. The need for advancements in mobility-assistive technologies is continually growing due to advances in medicine and rehabilitation that preserve and prolong the lives of people with disabilities, increases in the senior population, and increases in the number of veterans and civilians involved in conflict situations. The purpose of this study is to survey a large sample of veterans and other consumers with disabilities who use mobility-assistive technologies to identify priorities for future research and development. Materials and Methods This survey asked participants to provide opinions on the importance of developing various mobility-assistive technologies and to rank the importance of certain technologies. Participants were also asked to provide open-ended comments and suggestions. Results A total of 1,022 individuals, including 500 veterans, from 49 states within the USA and Puerto Rico completed the survey. The average age of respondents was 54.3 yr, and they represented both new and experienced users of mobility-assistive technologies. The largest diagnostic group was spinal cord injury (SCI) (N = 491, 48.0%). Several themes on critical areas of research emerged from the open-ended questions, which generated a total of 1,199 comments. Conclusion This survey revealed several themes for future research and development. Advanced wheelchair design, smart device applications, human-machine interfaces, and assistive robotics and intelligent systems emerged as priorities. Survey results also demonstrated the importance for researchers to understand the effects of policy and cost on translational research and to be involved in educating both consumers and providers.

Psychometric properties of the Children’s Dermatology Life Quality Index in pediatric localized scleroderma

Introduction: The Children’s Dermatology Life Quality Index has been used to measure quality of life in studies of pediatric localized scleroderma, which suggested only modest effects on quality of life. However, the Children’s Dermatology Life Quality Index psychometric performance has not been examined in localized scleroderma and it was validated in populations lacking localized scleroderma’s distinctive clinical features, possibly underestimating the quality of life impact. This study assessed psychometric properties of the Children’s Dermatology Life Quality Index in a cohort of pediatric localized scleroderma patients. Methods: Existing Children’s Dermatology Life Quality Index data from a large pediatric localized scleroderma cohort were analyzed. Children’s Dermatology Life Quality Index score distributions were examined and internal consistency was evaluated with Cronbach’s alpha for the entire Children’s Dermatology Life Quality Index and after deletion of individual items. Construct validity was assessed by calculating Spearman’s correlations between Children’s Dermatology Life Quality Index scores and disease severity/impact measures. Dimensionality was examined using exploratory factor analysis with sequential item elimination. Results: Children’s Dermatology Life Quality Index scores suggested modest adverse effects on quality of life. Internal consistency was adequate (Cronbach’s alpha = 0.727) but increased after eliminating items regarding friendships, sleep, and treatment burdens. Children’s Dermatology Life Quality Index scores were not associated with physician-scored disease severity measures but were moderately associated with patient/parent assessments of disease impact. Exploratory factor analysis yielded a three-factor solution encompassing functional limitations, psychosocial effects, and skin symptoms/treatment burden. Conclusion: The Children’s Dermatology Life Quality Index may capture functional and psychosocial domains of quality of life in localized scleroderma, but likely underestimates the quality of life impact given that it includes some items with limited relevance in localized scleroderma, incompletely explores skin symptoms and treatment burdens, and demonstrates limited construct validity. Further study to optimize quality of life measurement in pediatric localized scleroderma is warranted.

The future of the provision process for mobility assistive technology: a survey of providers

Abstract Purpose: The purpose of this study was to evaluate the opinions of providers of mobility assistive technologies to help inform a research agenda and set priorities. Materials and methods: This survey study was anonymous and gathered opinions of individuals who participate in the process to provide wheelchairs and other assistive technologies to clients. Participants were asked to rank the importance of developing various technologies and rank items against each other in terms of order of importance. Participants were also asked to respond to several open-ended questions or statements. Results: A total of 161 providers from 35 states within the USA consented to participation and completed the survey. Conclusions: This survey revealed themes of advanced wheelchair design, assistive robotics and intelligent systems, human machine interfaces and smart device applications. It also outlined priorities for researchers to provide continuing education to clients and providers. These themes will be used to develop research and development priorities. Implications for Rehabilitation • Research in advanced wheelchair design is needed to facilitate travel and environmental access with wheelchairs and to develop alternative power sources for wheelchairs.• New assistive robotics and intelligent systems are needed to help wheelchairs overcome obstacles or self-adjust, assist wheelchair navigation in the community, assist caregivers and transfers, and aid ambulation.• Innovations in human machine interfaces may help advance the control of mobility devices and robots with the brain, eye movements, facial gesture recognition or other systems.• Development of new smart devices is needed for better control of the environment, monitoring activity and promoting healthy behaviours.