Search

Although the physiatric community increasingly embraces evidence-based medicine (EBM), the current state of EBM training for trainees in physiatry is unclear. The purposes of this article are to report the results of the Association of Academic Physiatrists’ surveys of physiatry residency programs in the United States, to discuss the implications of their findings, and to better delineate the “baseline” upon which sound and clear recommendations for systematic EBM training can be made. The two Association of Academic Physiatrists surveys of US physiatry residency programs reveal that most survey respondents report that they include EBM training in their programs that covers the five recommended steps of EBM core competencies. However, although most respondents reported using traditional pedagogic methods of training such as journal club, very few reported that their EBM training used a structured and systematic approach. Future work is needed to support and facilitate physiatry residency programs interested in adopting structured EBM training curricula that include recommended EBM core competencies and the evaluation of their impact.

The purpose of this study was to examine factors associated with variability in satisfaction with functional mobility (as measured by the Functional Mobility Assessment [FMA]) in users of mobility devices. Our primary hypothesis was that device type and Assistive Technology Professional (ATP) involvement will be the most significant predictors of FMA score. Our secondary hypothesis was that ATP involvement is associated with use of more custom-fitted manual wheelchairs and group 3 and 4 power wheelchairs.Retrospective cohort study.Data were collected from equipment suppliers who collaborate with clinicians to administer the FMA and associated Uniform Data Set within various settings (ie, rehabilitation clinic, school, supplier place of business).A data set of 4743 cases was included in the analysis (N=4743).Not applicable.FMA questionnaire collected at baseline, client age, gender, primary diagnosis, years since disability onset, device type, device age, living situation, ATP involvement, and geographic area.Ordinal logistic regression modeling showed that geographic area, device type, ATP involvement, primary diagnosis, gender, age, device age, and years since onset of disability significantly predicted the variance in FMA scores at P.05. Device type was the most significant predictor of variance in FMA score. Involvement of an ATP had a significant effect on the type of device that participants used (χThe relationship between ATP involvement and functional outcome supports the concept that ATP certification recognizes demonstrated competence in analyzing the needs of consumers with disabilities and selection of appropriate mobility assistive equipment with improved functional outcomes.

This study used a spina bifida electronic medical record and the National Spina Bifida Patient Registry to explore the relationship between neurosurgical/orthopedic surgeries and other variables on ambulation and transfer ability over time in individuals with spina bifida.This study was an analysis of longitudinal data collected within the National Spina Bifida Patient Registry and spina bifida electronic medical record. Logistic regression models were used to determine which variables were associated with ambulation/transfer ability in the myelomeningocele (MMC) and non-MMC populations.Longitudinal data from 806 individuals were collected. In the MMC group, decreased ambulation ability was associated with higher motor levels, tethered cord releases, spine/scoliosis surgeries, hip orthopedic surgeries, and having supplemental insurance. Increased ambulatory ability was associated with lower motor levels, tibial torsion/related surgeries, ankle/foot surgeries, being female, and being non-Hispanic/Latinx. Decreased transfer ability was associated with being Hispanic/Latinx and having higher motor levels. Lower motor level and ankle/foot surgeries were associated with increased transfer ability. No significant associations were found in the non-MMC group.Motor level is an important predictor of ambulation and transfer ability in MMC. Surgeries distal to the knee were associated with higher levels of function; surgeries proximal to the knee were associated with lower functional levels.

The purpose of this study was to compare telehealth and in-person service delivery models for wheeled mobility devices in terms of functional outcomes. We hypothesized that clinically significant improvements in functional mobility measured by the Functional Mobility Assessment (FMA) will occur in individuals receiving both telehealth and in-person clinic evaluations. A total of 27 Veterans receiving telehealth visits were compared to 27 individuals seen in clinic, selected from a database, matching for age, gender, and primary diagnosis. All mean individual item and total FMA scores in both groups increased from Time 1 to Time 2. Within the telehealth group, all changes in individual item and total FMA scores were statistically significant, with changes in 8 of 10 items meeting threshold for clinical significance (change >1.85 points). Within the clinic group, changes in 7 of 10 individual items and total FMA scores were statistically significant, and these same 7 items met threshold for clinical significance. Change scores for individual item and total FMA scores did not differ significantly between the two groups. A larger and clinically significant change in transfer score was seen in the telehealth group, suggesting telehealth visits may confer an advantage in being able to assess and address transfer issues in the home.

Objective To identify the specific features that contribute to the variability in baseline wheelchair transfer and the changes in transfer ability (gain or loss) over time for a large cohort of patients with spina bifida (SB) in the National Spina Bifida Patient Registry. Design Longitudinal cohort study. Setting A total of 35 United States outpatient SB clinic sites. Participants Individuals (N=1687) with SB ages 5-73 (median, 13.33) years who were therapeutic ambulators or nonambulators. Intervention Not applicable. Main Outcome Measure Ability to transfer from a wheelchair to another level surface. Results Bayesian Network Analysis was used to reduce the initial variable set to the following predictors: SB subphenotype, motor level, age, insurance, sex, race, ethnicity, surgical procedures, and number of visits. We used a multinomial logistic model with Wald Chi-square analysis of effects to examine the relationships between transfer ability and predictors. A total of 295 of 1687 eligible patients (17.56%) with myelomeningocele (MMC) and 6 of 58 eligible patients (10.32%) with non-MMC experienced changes in transfer ability during the period of the study. For those with MMC and non-MMC, the highest number of individuals exhibiting changes in motor level had changes from thoracic to high-lumbar, high-lumbar to thoracic, high-lumbar to midlumbar, and midlumbar to high-lumbar lesion levels. Results of the Bayesian Network Analysis revealed that motor level was the predominant factor associated with baseline transfer ability followed by age. The combination of SB sub phenotype, motor level, age, insurance status, number and type of surgical procedures, and time point accurately classified the loss, gain, or no change in transfer ability 82.7% of the time. Conclusions Motor level was the predominant factor associated with baseline transfer ability, and the change in transfer ability was directly related to a corresponding change in motor level that might be explained by changes in muscle strength of the iliopsoas and quadriceps.

Over one billion people with disabilities (PWDs) and older adults with mobility impairment are currently in need of assistive technology devices (ATDs) and only 10% of those population have ordinarily access to them. The need for advancement in mobility-assistive technology is growing to address the gap in ATDs provision globally. The purpose of this review is to identify potential future areas of development and research in mobility-assistive technology.Publications were identified using scientific and medical electronic databases. Also, a limited grey literature search was conducted to muster a variety of sources. A combination of keyword search terms was used, corresponding to the medical subject heading (MeSH) terms.A total of 392 articles were identified, of which 75 were selected for detailed review. Twenty-eight articles were identified that met the review's inclusion criteria. Future areas of research for mobility-assistive technology were identified by grouping the publications into four main categories. The findings of this review identified several areas of research and development in ATDs in general and mobility-assistive technology, in particular, with special attention to the importance of engaging users and stakeholders in the process of research and design.It is apparent that users' needs and priorities vary between regions within countries. The majority of studies were noted to mainly identify consumers' perspectives on a national basis. The authors, therefore, suggest that further research should be conducted on a global level to determine the knowledge and perspectives concerning future research and development needs and priorities in mobility-assistive technologies.Implication for RehabilitationDespite the benefits derived from the use of ATDs, only 10% of people with disabilities have access to them.Increasing access, quality and affordable ATDs in all countries is global demand.Identifying mobility consumers' needs and priorities would help in enhancing their quality of life by translating research into new technologies that meet their environment and culture needs.Users' involvement in research and design process is a crucial approach to re-shape the future research agenda.

The aim of this project was to evaluate the 10-yr outcomes from the Rehabilitation Research Experience for Medical Students. A target benchmark was one high-quality output per student. Students were required to devise a research project and work full time with a mentor at an approved sponsor site for 8 wks. Longitudinal surveys were used to collect data about research outputs, match results, and decisions about whether to pursue academic careers. From 2008 to 2017, 73 (48%) of 153 applicants were awarded summer externships. Residency match results included the following: physical medicine and rehabilitation (45%), internal medicine (17%), emergency medicine (8%), orthopedic surgery (6%), neurology (6%), psychiatry (6%), OBGYN (6%), pediatrics (4%), and anesthesia (2%). The Rehabilitation Research Experience for Medical Students was successful in exceeding the target benchmark for quality scholarly output, which included 73 oral presentations at the Association of Academic Physiatrists meeting, 63 published and 20 in-review articles directly related to summer research, 5 book chapters, and 51 published and 20 in-review articles that were indirectly related to summer research. A total of 77% reported that the Rehabilitation Research Experience for Medical Students positively influenced their decision to pursue research in their future career, and 70% endorsed interest in becoming a clinician scientist.

OBJECTIVE The aim of the study was to identify which neurologic impairment scales correlate with ambulation status in adults with spina bifida. DESIGN A retrospective chart review was performed on patients seen at the University of Pittsburgh Medical Center Adult Spina Bifida Clinic. Findings were graded using several neurologic impairment scales: two versions of the National Spina Bifida Patient Registry classification, the International Standards for Neurological Classification of Spinal Cord Injury motor level, and the Broughton Neurologic Impairment Scale. Ambulation ability was ranked using the Hoffer classification system. RESULTS Data collected from 409 patient records showed significant correlations between Hoffer ambulation status and all neurologic impairment scales evaluated. The strongest correlation was noted with the Broughton classification (rs = -0.771, P < 0.001). High correlations were also noted with both versions of the National Spina Bifida Patient Registry: strength 3/5 or greater (rs = -0.763, P < 0.001), and strength 1/5 or greater (rs = -0.716, P < 0.001). For the International Standards for Neurological Classification of Spinal Cord Injury motor level, only a moderate correlation was observed (rs = -0.565, P < 0.001). CONCLUSIONS Multiple grading scales can be used to measure motor function in adult spina bifida patients. Although the Broughton classification seems to be the most highly correlated with ambulation status, the less complex National Spina Bifida Patient Registry scale is also highly correlated and may be easier to administer in busy clinic settings. TO CLAIM CME CREDITS Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: Upon completion of this article, the reader should be able to: (1) Explain the clinical significance of identifying ambulation status and maximizing ambulation potential in adults with spina bifida; (2) Describe each of the neurologic grading scales examined in this study, identifying potential shortcomings in applying them to the adult spina bifida population; and (3) Administer the National Spina Bifida Patient Registry (NSBPR) impairment scale motor assessment in a standard adult spina bifida outpatient clinic visit. LEVEL Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Providing comprehensive transition care for adolescents and young adults with spina bifida (AYASB) requires a structured approach to addressing chronic condition management, self-management, care coordination, and health care navigation that is adaptable to the various levels of cognitive ability, physical function, and family/community environments within the population. This commentary (1) highlights AYASB transition program needs identified in the literature and within a local community, (2) analyzes advantages and limitations of published AYASB transition care models in addressing these needs, (3) demonstrates how a spina bifida (SB) transition clinic used the Chronic Care Model (CCM) to develop a comprehensive AYASB transition program, and (4) examines the potential feasibility in adapting this model to other SB clinics. A SB-specific transition clinic based on the CCM model facilitates the complex chronic care management and transition planning for AYASB. Further study is needed to evaluate health care outcomes using the CCM for SB transition.

PURPOSE: Neurogenic bowel dysfunction (NBD) is a common comorbidity of myelomeningocele (MMC), the most common and severe form of spina bifida. The National Spina Bifida Patient Registry (NSBPR) is a research collaboration between the CDC and Spina Bifida Clinics. Fecal continence (continence) outcomes for common treatment modalities for NBD have not been described in a large sample of individuals with MMC. NSBPR patients with MMC and NBD were studied to determine variation in continence status and their ability to perform their treatment independently according to treatment modality and individual characteristics. METHODS: Continence was defined as < 1 episode of incontinence per month. Eleven common treatments were evaluated. Inclusion criteria were established diagnoses of both MMC and NBD, as well as age ≥ 5 years (n = 3670). Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate the odds of continence outcomes by age, sex, race/ethnicity, level of motor function, and insurance status. RESULTS: At total of 3670 members of the NSBPR met inclusion criteria between November 2013 and December 2017. Overall prevalence of continence was 45%. Prevalence ranged from 40–69% across different treatments. Among continent individuals, 60% achieved continence without surgery. Antegrade enemas were the most commonly used treatment and had the highest associated continence rate. Ability to carry out a treatment independently increased with age. Multivariable logistic regression showed significantly higher odds of continence among individuals aged ≥ 12 years, female, non-Hispanic white, and with private insurance. CONCLUSIONS: The prevalence of continence was generally low and varied between treatment modalities. Better treatment algorithms considering patient factors may result in improved outcomes.

Objective To investigate social determinants of health (SDoH) interventions on individual health outcomes, population health, and cost for persons in the United States over age 18 living with disabilities and receiving long-term services and supports (LTSS) in noninstitutional settings. Data Sources A review using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines was conducted of literature from PubMed, PsycINFO, REHABDATA, and Web of Science Core Collection published between January 1997 and July 2020. Study Selection Search terms were based on the primary SDoH domains identified by the Centers for Medicare and Medicaid's Accountable Health Communities Model. A total of 5082 abstracts were screened based on identification criteria of persons age 18 and above living in non-institutional, community-based settings receiving LTSS. Data Extraction During Level 2 review, articles were reviewed based on population focus, type of LTSS (personal assistance services, home care, adult day care, home modification, durable medical equipment, community transition services, caregiver supports and/or prevention services related to home- and community-based care), SDoH intervention and association with health outcomes, population health and/or cost. A total of 1037 abstracts underwent Level 2 review, yielding 131 publications or 1.3% for full review. Data Synthesis Studies (n=33) designed a priori to test outcomes of interventions were rated according to Grading Recommendations Assessment Development and Evaluation (GRADE) criteria. Qualifying articles that did not include interventions (n=98) were included in our summary of the literature but were not assessed by GRADE. Conclusions The preponderance of research surrounding SDoH and health outcomes has focused on older adults living with disabilities, and most interventions scored low or very low using GRADE criteria. Evidence is limited to the extent SDoH interventions are measured against outcomes for persons of all ages living with disabilities. Robust evaluation of models that feature SDoH interventions in partnership with community-based organizations is recommended as home and community-based care infrastructure expands in response to the American Rescue Plan Act of 2021.

AIM To compare the frequencies of neurosurgical procedures to treat comorbid conditions of myelomeningocele in patients who underwent fetal surgery versus postnatal surgery for closure of the placode. METHOD By utilizing the National Spina Bifida Patient Registry in a comparative effectiveness study, 298 fetal surgery patients were matched by birthdate (±3mo) and spina bifida clinic site with one to three postnatal surgery patients (n=648). Histories were obtained by record review on enrollment and yearly subsequently. Multivariable Poisson regression was used to compare frequencies of procedures between cohorts, with adjustments for sex, ethnicity, insurance status, spinal segmental level of motor function, age at last visit recorded in the Registry, and, for shunt revision in shunted patients, age at cerebrospinal fluid (CSF) diversion. RESULTS The median age at last visit was 4 years. In fully adjusted analyses in patients aged at least 12 months old, fetal surgery was associated with decreased frequency of CSF diversion for hydrocephalus by ventriculoperitoneal shunt insertion or endoscopic third ventriculostomy compared with postnatal surgery (46% vs 79%; incidence rate ratio=0.61; 95% confidence interval [CI] 0.53-0.71; p

Introduction The provision of seating and wheeled mobility devices is a complex process that requires trained professionals and multiple appointments throughout the service delivery process. However, this can be inconvenient and burdensome for individuals with mobility limitations or for individuals who live in rural areas. Rural areas often present unique difficulties regarding the provision of healthcare services including lengthy travel times to medical facilities and lack of specialized providers and medical technology. The purpose of this article is to provide a comprehensive overview of the development and implementation of a service delivery protocol for a home-based telerehabilitation assessment for wheelchair seating and mobility. Materials and Methods The telerehabilitation team consists of a trained wheelchair seating and mobility therapist and a telehealth clinical technician (TCT). In order to determine veterans that are appropriate for a home-based telerehabilitation assessment, a three-phase pre-assessment screening process was conducted by the therapist and TCT, including consult, chart, and phone review. Veterans that met all of the predetermined eligibility criteria were recommended for a telerehabilitation wheelchair assessment. The TCT traveled to the veteran’s residence with necessary evaluation and safety equipment and connected with the therapist remotely using the VA Video Connect platform. Assessment and veteran data were collected during the initial evaluation and then during a 21-day follow-up. Results Forty-three veterans were successfully seen via telerehabilitation for a seating and wheeled mobility assessment between November, 2017 and July, 2018. The average travel distance between the veteran’s residence and the clinic was 34.1 miles. The total telerehabilitation encounter times ranged from 45 min to 145 min. Conclusions The implementation of this service delivery protocol for wheelchair seating and mobility assessments demonstrated the benefits of using telehealth services including reaching rural veterans, reducing distance traveled, maximizing efficiency of provider schedules, and conducting realistic assessments in veterans’ home environments. Success can be attributed to being able to deliver best practice remotely and to the rapport of the TCT with the providers. Cultivating provider buy-in, selecting appropriate outcome measures, and restructuring workflows were additional lessons learned. The VA Video Connect platform is an accessible tool that can be easily learned by both veterans and providers and used beyond initial wheelchair seating evaluations for improved access to follow-up healthcare services.

Background Mobile health systems have been shown to be useful in supporting self-management by promoting adherence to schedules and longitudinal health interventions, especially in people with disabilities. The Interactive Mobile Health and Rehabilitation (iMHere) system was developed to empower people with disabilities and those with chronic conditions with supports needed for self-management and independent living. Since the first iteration of the iMHere 1.0 app, several studies have evaluated the accessibility and usability of the system. Potential opportunities to improve and simplify the user interface were identified, and the iMHere modules were redesigned accordingly. Objective In this study, we aim to evaluate the usability of the redesigned modules within the iMHere 1.0 app. Methods We evaluated the original and redesigned iMHere modules—MyMeds and SkinCare. The Purdue Pegboard Test was administered to assess the participants’ dexterity levels. Participants were then asked to perform a set of tasks using both the original and redesigned MyMeds and SkinCare modules to assess their efficiency and effectiveness. Usability was measured using the Telehealth Usability Questionnaire to evaluate 10 new accessibility features that were added to the redesigned app. Participants were also asked which version they preferred. Results In total, 24 participants with disabilities and varying degrees of dexterity impairments completed the entire study protocol. Participants displayed improved efficiency and effectiveness when using the redesigned modules compared with the original modules. The participants also reported improved usability and preferred the redesigned modules. Conclusions This study demonstrated that the iMHere system became more efficient, effective, and usable for individuals with dexterity impairments after redesigning it according to user-centered principles.

Purpose Investigate the type and frequency of wheelchair repairs and resulting adverse consequences in a Veteran population. Design Convenience cross-sectional sample survey. Setting Data were collected at the 2017 National Veterans Wheelchair Games. Participants Veterans who use a wheelchair ≥ 40 h/wk (n = 60). Intervention Not applicable. Main outcome measures Repairs and associated adverse consequences, wheelchair age and usage, type of repairs completed, time elapsed between breakdowns and repairs, and who completed repairs. Results 60 participants reported 124 repairs in the previous 6 months with 88.3% of participants requiring at least one repair. Consequences were reported by 43.5% of those experiencing repairs and were most commonly secondary to repairs in the electrical system, wheelchair frame, power/control system, and wheels and casters. Travelling greater distances during the week and on weekends was associated with increased rates of repairs (p = 0.01 and p = 0.02, respectively) and consequences (p = 0.03 and p = 0.03, respectively). Power wheelchairs were more likely to require repairs than manual wheelchairs (p = 0.007). The median time to repair was 7 [0.8,30] days. Vendors completed 82.1% of the repairs. Those experiencing longer repair times were more likely to experience adverse consequences (p Conclusion A high number of repairs and resulting adverse consequences occur for wheelchair users, particularly power wheelchair users, in a sample of Veterans. Interventions to prevent breakdowns and to address repairs and adverse consequences in a time-efficient manner are needed. Implications for rehabilitation In a sample of Veterans, a high number of repairs and resulting adverse consequences occur for wheelchair users, particularly power wheelchair users. There is an important clinical opportunity to help wheelchair users avoid repairs in the first place and reduce adverse consequences after breakdowns occur by improving wheelchair quality, providing preventative chair maintenance, and repairing breakdowns in a timely and efficient manner. These interventions may prove impactful in reducing the adverse medical, functional, and social consequences of wheelchair breakdowns.

Tips and falls are the most prominent causes of wheelchair accidents that occur when driving on uneven terrains and less accessible environments. The Mobility Enhancement Robotic Wheelchair (MEBot) was designed to improve the stability of Electric Powered Wheelchairs (EPW) when driving over these environments. MEBot offers six independently height-adjustable wheels to control attitude of its seat over uneven and angled terrains. Its attitude control application uses an inertial measurement unit to detect seat angles changes to adjust each wheel-height accordingly. MEBot was compared to commercial EPWs in terms of EPW performance (seat angle changes and response time) and participant perception (satisfaction and task-load demand) towards each device. Ten participants drove their own EPW and MEBot for five trials each through driving tasks that replicated outdoor environments. Results showed less change in the pitch angle when driving up and down a 10° slope using MEBot (5.6 ± 1.6°, 6.6 ± 0.5°) compared to the participants’ own EPW (14.6 ± 2.6°, 12.1 ± 2.6°). However, MEBot required 7.8 ± 3.0 s to self-adjust to the minimum angle when driving over the tasks. Participants reported no difference in satisfaction and task load demand between EPWs due to similarities in comfort and ease-of-use. Improving the speed and efficiency of MEBot's attitude control application will be addressed in future work based upon participants’ feedback.

Objective Evidence is limited regarding clinical factors associated with ambulation status over the lifespan of individuals with myelomeningocele. We used longitudinal data from the National Spina Bifida Patient Registry to model population-level variation in ambulation over time and hypothesized that effects of clinical factors associated with ambulation would vary by age and motor level. Design A population-averaged generalized estimating equation was used to estimate the probability of independent ambulation. Model predictors included time (age), race, ethnicity, sex, insurance, and interactions between time, motor level, and the number of orthopedic, noncerebral shunt neurosurgeries, and cerebral shunt neurosurgeries. Results The study cohort included 5371 participants with myelomeningocele. A change from sacral to low-lumbar motor level initially reduced the odds of independent ambulation (OR = 0.24, 95% CI = 0.15-0.38) but became insignificant with increasing age. Surgery count was associated with decreased odds of independent ambulation (orthopedic: OR = 0.65, 95% CI = 0.50-0.85; noncerebral shunt neurosurgery: OR = 0.65, 95% CI = 0.51-0.84; cerebral shunt: OR = 0.90, 95% CI = 0.83-0.98), with increasing effects seen at lower motor levels. Conclusions Our findings suggest that effects of several commonly accepted predictors of ambulation status vary with time. As the myelomeningocele population ages, it becomes increasingly important that study design account for this time-varying nature of clinical reality. To claim cme credits Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: Upon completion of this article, the reader should be able to: (1) Describe general trends in ambulation status by age in the myelomeningocele population; (2) Recognize the nuances of cause and effect underlying the relationship between surgical intervention and ambulation status; (3) Explain why variation of clinical effect over time within myelomeningocele population matters. Level Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Technologies capable of projecting injury and performance metrics to athletes and coaches are being developed. Wheelchair athletes must be cognizant of their upper limb health; therefore, systems must be designed to promote efficient transfer of energy to the handrims and evaluated for simultaneous effects on the upper limbs. This article is brief review of resources that help wheelchair users increase physiologic response to exercise, develop ideas for adaptive workout routines, locate accessible facilities and outdoor areas, and develop wheelchair sports-specific skills.

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.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.A total of 161 providers from 35 states within the USA consented to participation and completed the survey.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.

A hybrid neuroprosthesis that combines human muscle power, elicited through functional electrical stimulation (FES), with a powered orthosis may be advantageous over a sole FES or a powered exoskeleton-based rehabilitation system. The hybrid system can conceivably overcome torque reduction due to FES-induced muscle fatigue by complementarily using torque from the powered exoskeleton. The second advantage of the hybrid system is that the use of human muscle power can supplement the powered exoskeleton's power (motor torque) requirements; thus, potentially reducing the size and weight of a walking restoration system. To realize these advantages, however, it is unknown how to concurrently optimize desired control performance and allocation of control inputs between FES and electric motor. In this paper, a model predictive control-based dynamic control allocation (DCA) is used to allocate control between FES and the electric motor that simultaneously maintain a desired knee angle. The experimental results, depicting the performance of the DCA method while the muscle fatigues, are presented for an able-bodied participant and a participant with spinal cord injury. The experimental results showed that the motor torque recruited by the hybrid system was less than that recruited by the motor-only system, the algorithm can be easily used to allocate more control input to the electric motor as the muscle fatigues, and the muscle fatigue induced by the hybrid system was found to be less than the fatigue induced by sole FES. These results validate the aforementioned advantages of the hybrid system; thus implying the hybrid technology's potential use in walking rehabilitation.

Rehabilitation Engineering is the use of engineering principles applied to rehabilitation, disability, and independent living. Google Scholar is a searchable resource that allows people from around the world to create profiles of their interests and collaborations, and it provides a means to search the broad scientific and technical literature. Google Scholar was used to identify the 150 most cited people who listed Rehabilitation Engineering in their profile. Research impact, characteristics, and areas of research of the most cited rehabilitation engineers were examined. Furthermore, gender and geographical differences in research metrics of the highest citied rehabilitation engineers were investigated. Consumer priorities in rehabilitation engineering were identified using a voice of consumer (VoC) survey and recent literature based on VoC studies. Gaps between research publication and activities and consumer priorities were identified to recommend seven areas of research with high demand and opportunity for growth and innovation. Implications. • Rehabilitation Engineering appears to be a male-dominated profession similar to other engineering disciplines. • There are disparities in the number of rehabilitation engineers and measures of scientific productivity between different regions of the world. • Despite people identifying as rehabilitation engineers in every region, the most cited were identified as working in the World Health Organization Region of Americas and the European Region. • There appears to be benefits for rehabilitation engineers who have multiple collaborations and who work in doctoral degree-granting institutions. • Seven areas of research identified as consumer priorities were not captured by the most cited rehabilitation engineers these include: 1) Transportation and automobile driving 2) Recreation/Leisure 3) Autonomous vehicles/wheelchairs 4) Smart home/IoT 5) Computer/mobile applications and telecommunications 6) Patient transfer devices 7) Power sources. These priorities are opportunities for growth and innovation.

People with disabilities face many travel barriers. Autonomous vehicles and services may be one solution. The purpose of this project was to conduct a systematic review of the grey and scientific literature on autonomous vehicles for people with disabilities. Scientific evidence (n = 35) was limited to four observational studies with a very low level of evidence, qualitative studies, reviews, design and model reports, and policy proposals. Literature on older adults was most prevalent. Grey literature (n = 37) spanned a variety of media and sources and focuses on a variety of disability and impairment types. Results highlight opportunities and barriers to accessible and usable AVs and services, outline research gaps to set a future research agenda, and identify implications for policy and knowledge translation. People with disabilities are a diverse group, and accessible and usable design solutions will therefore need to be tailored to each group’s needs, circumstances, and preferences. Future research in diverse disability groups should include more participatory action design and engineering studies and higher quality, prospective experimental studies to evaluate outcomes of accessible and usable AV technology. Studies will need to address not only all vehicle features but also the entire travel journey.

Exposure to the field of Physical Medicine and Rehabilitation (PM&R) is limited in the curricula of many medical schools. As a result, many students lack awareness of the field and may therefore ultimately choose different careers. A medical student PM&R career fair was held on October 13th, 2015 at the University of Pittsburgh, and several local medical schools were invited to participate. Seven stations were deployed to highlight various aspects of PM&R careers. A total of 57 medical students attended, representing five different campuses across three states, with 29 of the reported medical students still within their first or second year of medical education. Self-reported interest and understanding of PM&R significantly increased in those attending the fair compared to baseline, with nearly half requesting further opportunities for faculty mentorship. These results indicate that PM&R interest fairs may be a means to further student understanding and awareness of PM&R while providing an opportunity to become more involved in the field.

Objective: The overall objective of this project was to identify consumers' opinions of their needs and wants related to assistive technology (AT) in a systematic and quantitative manner via a questionnaire that can be used to validate existing and establish new research priorities. Methods: This pilot study describes questionnaire development, online implementation, and revisions considered to the questionnaire in preparation for conducting a nationwide survey. Data from a sample (N = 112) are presented. The pilot study was critical to refine the questions and ensure that meaningful information was being collected. Results: It was identified that revisions were warranted to provide more structure and allow for consumers to prioritize AT research efforts. Conclusion: The questionnaire results, although positively in favor of many of the technologies presented, are inconclusive to identify generalizable research priorities, thus expansion to a nationwide population is warranted.

Currently a telerehabilitation system includes a therapist and a patient where the therapist interacts with the patient, typically via a verbal and visual communication, for assessment and supervision of rehabilitation interventions. This mechanism often fails to provide physical assistance, which is a modus operandi during physical therapy or occupational therapy. Incorporating an actuation modality such as functional electrical stimulation (FES) or a robot at the patient’s end that can be controlled by a therapist remotely, to provide therapy or to assess and measure rehabilitation outcomes can significantly transform current telerehabilitation technology. In this paper, a position-synchronization controller is derived for FES-based telerehabilitation to provide physical assistance that can be controlled remotely. The newly derived controller synchronizes an FES-driven human limb with a remote physical therapist’s robotic manipulator despite constant bilateral communication delays. The control design overcomes a major stability analysis challenge: the unknown and unstructured nonlinearities in the FES-driven musculoskeletal dynamics. To address this challenge, the nonlinear muscle model was estimated through two neural networks functions that approximated unstructured nonlinearities and an adaptive control law for structured nonlinearities with online update laws. A Lyapunov-based stability analysis was used to prove the globally uniformly ultimately bounded tracking performance. The performance of the state synchronization controller was validated through experiments on an able-bodied subject. Specifically, we demonstrated bilateral control of FES-elicited leg extension and a human operated robotic manipulator. The controller was shown to effectively synchronize the system despite unknown and different delays in the forward and backward channels.

Background Individuals with spinal cord injury (SCI) are at risk for secondary medical complications, such as urinary tract infections (UTIs) and pressure injuries, that could potentially be mitigated through improved self-management techniques. The Interactive Mobile Health and Rehabilitation (iMHere) mobile health (mHealth) system was developed to support self-management for individuals with disabilities. Objective The main objective of this study was to determine if the use of iMHere would be associated with improved health outcomes over a 9-month period. A secondary objective was to determine if the use of iMHere would be associated with improved psychosocial outcomes. Phone usage, app usage, and training time data were also collected to analyze trends in iMHere use. Methods Overall, 38 participants with SCI were randomized into either the intervention group who used the iMHere system and received standard care or the control group who received standard care without any technology intervention. Health outcomes were recorded for the year before entry into the study and during the 9 months of the study. Participants completed surveys at baseline and every 3 months to measure psychosocial outcomes. Results The intervention group had a statistically significant reduction in UTIs (0.47 events per person; P=.03; number needed to treat=2.11). Although no psychosocial outcomes changed significantly, there was a nonsignificant trend toward a reduction in mood symptoms in the intervention group compared with the control group meeting the threshold for clinical significance. Approximately 34 min per participant per month were needed on average to manage the system and provide technical support through this mHealth system. Conclusions The use of the iMHere mHealth system may be a valuable tool in the prevention of UTIs or reductions in depressive symptoms. Given these findings, iMHere has potential scalability for larger populations. Trial Registration ClinicalTrials.gov NCT02592291; https://clinicaltrials.gov/ct2/show/NCT02592291.

Background Spina Bifida (SB) is one of the most common birth defects and causes of permanent disability in the United States (US), with approximately 3.5 cases per 10,000 live births. Objective: To identify complications associated with SB related to skin breakdown, pain, and urinary tract infections (UTIs), and to examine socio-demographic differences related to these complications. Methods: Exploratory cross-sectional study via online of a national US convenience sample of adults with SB. Results: We collected 1485 survey responses, of which 852 had complete, useable data. Skin breakdown in one or more locations during the past year was reported by 43.1%. After controlling for socio-demographic characteristics, only mobility variables remained significant predictors of skin breakdown (assistive device use OR = 3.119, 95% CI: 1.749, 5.564; using a wheelchair OR = 6.336, 95% CI: 3.442, 11.662). Pain in past seven days was reported by 46.9%. Single respondents (OR = 0.621; 95% CI: 0.419, 0.921) and those with at least a Bachelor's degree (vs high school degree or less, OR = 0.468; 95% CI: 0.283, 0.774) were less likely, and those using assistive devices were significantly more likely (OR = 1.960; 95% CI: 1.163, 3.303), to report pain. About one-third (32.7%) reported having a UTI within the past 12 months. Notably, almost half (49.6%) of respondents did not answer this question. The presence of UTIs was not significantly related to any socio-demographic characteristics assessed. Conclusions: Adults with SB in the US live with a wide range of complications which are potentially under-monitored, with predictors of complications that require further research.

Background: Persons with chronic conditions and disabilities (PwCCDs) are vulnerable to secondary complications. Many of these secondary complications are preventable with proactive self-management and proper support. To enhance PwCCDs' self-management skills and conveniently receive desired support, we have developed a mobile health (mHealth) system called iMHere. In 2 previous clinical trials, iMHere was successfully used to improve health outcomes of adult participants with spina bifida and spinal cord injury. To further expand use of iMHere among people with various types of disabilities and chronic diseases, the system needs to be more adaptive to address 3 unique challenges: 1) PwCCDs have very diverse needs with regards to self-management support, 2) PwCCDs’ self-management needs may change over time, and 3) it is a challenge to keep PwCCDs engaged and interested in long-term self-management. Objective: The aim of this study was to develop an adaptive mHealth system capable of supporting long-term self-management and adapting to the various needs and conditions of PwCCDs. Methods: A scalable and adaptive architecture was designed and implemented for the new version, iMHere 2.0. In this scalable architecture, a set of mobile app modules was created to provide various types of self-management support to PwCCDs with the ability to add more as needed. The adaptive architecture empowers PwCCDs with personally relevant app modules and allows clinicians to adapt these modules in response to PwCCDs’ evolving needs and conditions over time. Persuasive technologies, social support, and personalization features were integrated into iMHere 2.0 to engage and motivate PwCCDs and support long-term usage. Two initial studies were performed to evaluate the usability and feasibility of the iMHere 2.0 system. Results: The iMHere 2.0 system consists of cross-platform client and caregiver apps, a Web-based clinician portal, and a secure 2-way communication protocol for providing interactions among these 3 front-end components, all supported by a back-end server. The client and caregiver apps have 12 adaptive app modules to support various types of self-management tasks. The adaptive architecture makes it possible for PwCCDs to receive personalized app modules relevant to their conditions with or without support from various types of caregivers. The personalization and persuasive technologies in the architecture can be used to engage PwCCDs for long-term usage of the iMHere 2.0 system. Participants of the usability study were satisfied with the iMHere 2.0 client app. The feasibility evaluation revealed several practical issues to consider when implementing the system on a large scale. Conclusions: We developed an adaptive mHealth system as a novel method to support diverse needs in self-management for PwCCDs that can dynamically change over time. The usability of the client app is high, and it was feasible for PwCCDs to use in supporting personalized and evolving self-care needs.

The multidisciplinary model (MCM) is described as one that utilizes skills and experience from practitioners belonging to various disciplines, each treating patients from a specific clinical perspective.(1) The Spina Bifida Association (SBA) supports and recommends that clinical care for people with Spina Bifida (SB) be provided in specialty clinics of which the MCM is an example; that care be coordinated; and that there be a plan for transitional care.(2) This paper explores the challenges the MCM faces with a transitioning and aging population in a care system that calls for a positive patient experience, engaged health care professionals, desired outcomes, with consideration of cost.

Purpose To describe pulmonary function and determine the impact of neurological level, scoliosis, and obesity on pulmonary function in people with spina bifida (SB). Methods Participants with SB (N= 29) (15 females; age, 30 ± 12 years) completed spirometry and body plethysmographic lung volume testing. Univariate and multivariate regression analyses were used to describe the factors associated with pulmonary function in people with SB. Results Distribution of category of impairment in pulmonary function was: 55% (n= 16) restricted, 6.9% (n= 2) spirometric restricted, 1 combined obstructed and restricted, and 35.5% (n= 10) normal. In univariate analyses, neurological level was negatively associated with pulmonary function parameters, i.e., forced vital capacity (FVC) (p= 0.005), forced expiratory volume in 1 second (FEV1) (p= 0.008), total lung capacity (TLC) (p= 0.001), and degree of scoliosis were inversely associated with FVC (p= 0.005), FEV1 (p= 0.003), and TLC (p= 0.004). In multivariate models, level of lesion and degree of scoliosis independently contributed to the degree of lung function impairment. Restrictive pulmonary function was observed in 9/10 (90%) of those with thoracic neurological levels and was associated with decreased inspiratory capacity (IC) and expiratory reserve volume (ERV). Lumbar level lesions were associated with either normal lung function or an isolated reduction in FVC due to reduction in only ERV and preserved TLC representing spirometric restriction. Conclusions High prevalence of restrictive pulmonary physiology is present in people with SB, with more rostral neurological levels and greater degree of scoliosis associated with a higher degree of pulmonary function impairment.

In response to the growing need to train a new generation of clinician scientists, a research program was developed to train medical students in integrative, complementary, and alternative medicine (ICAM) research early in their careers. A total of 25 students (100%) successfully completed a 10-week program. Students reported significantly increased levels of knowledge in all 7 integrative, complementary, and alternative medicine topics at the conclusion of the program. All students presented their work at one or more local research symposia. In addition, the average number of quality research outputs, which included manuscripts, awards, and abstracts presented at national and international meetings, was 1.5 per student, which exceeded benchmarks based on prior program outcomes. Results from this program may be useful when planning larger or longer-term projects aimed at attracting physicians who will become our next generation of academicians, researchers, and healers.

Created more than 30 years ago, 3-dimensional printing (3DP) has recently seen a meteoric rise in interest within medicine, and the field of Physical Medicine and Rehabilitation is no exception. Also called additive manufacturing (AM), the recent increase in the use of 3DP is likely due to lower-cost printers as well as breakthroughs in techniques and processing. This thematic narrative review serves to introduce the rehabilitation professional to 3DP technology and how it is being applied to orthoses, prostheses, and assistive technology (AT). The basics of the technology, as well as the benefits and challenges of using it within the rehabilitation framework, are described. Proponents of the technology suggest that 3DP offers not only a better way to make devices, but a better way to make improved devices. However, the strength of this claim has not been properly tested by the current literature. This narrative review evaluates the evidence and provides a discussion of possible implications for the rehabilitation professional.

A novel mobile health platform, Interactive Mobile Health and Rehabilitation (iMHere), is being developed to support wellness and self-management among people with chronic disabilities. The iMHere system currently includes a smartphone app with six modules for use by persons with disabilities and a web portal for use by medical and rehabilitation professionals or other support personnel. Our initial clinical research applying use of this system provides insight into the feasibility of employing iMHere in the development of self-management skills in young adults (ages 18-40 years) with spina bifida (Dicianno, Fairman, McCue, Parmanto, Yih, et al., 2015). This article is focused on describing the iterative design of the iMHere system including usability testing of both the app modules and clinician portal. Our pilot population of persons with spina bifida fostered the creation of a system appropriate for people with a wide variety of functional abilities and needs. As a result, the system is appropriate for use by persons with various disabilities and chronic conditions, not only spina bifida. In addition, the diversity of professionals and support personnel involved in the care of persons with spina bifida (SB) also enabled the design and implementation of the iMHere system to meet the needs of an interdisciplinary team of providers who treat various conditions. The iMHere system has the potential to foster communication and collaboration among members of an interdisciplinary healthcare team, including individuals with chronic conditions and disabilities, for client-centered approach to support self-management skills.

To determine feasibility of using the interactive Mobile Health and Rehabilitation (iMHere) system in spina bifida and its effects on psychosocial and medical outcomes.In a randomized controlled trial, 13 intervention participants using the iMHere system and receiving usual care and 10 control participants receiving usual care were followed for 1 year.Feasibility of use of the system was demonstrated by participants using a customized smartphone system for reminders to conduct various self-care tasks, upload photos of wounds, manage medications, complete mood surveys, and for secure messaging. High usage of the system was associated with positive changes in the subscales of the Adolescent Self-Management and Independence Scale II.Use of the iMHere system in spina bifida is feasible and was associated with short-term self-reported improvements in self-management skill. This system holds promise for use in many diverse chronic care models to support and increase self-management skills.

To provide descriptive data on ambulatory ability and muscle strength in a large cohort of individuals with spina bifida enrolled in a National Spina Bifida Patient Registry and to investigate factors associated with ambulatory status.Cross-sectional analysis of data from a multisite patient registry.Descriptive analysis of mobility variables for 2604 individuals with spina bifida aged 5 and older are presented from 19 sites in the United States. Analysis of a subset of National Spina Bifida Patient Registry data from 380 individuals from 3 sites accompanied by data from a specialized spina bifida electronic medical record revealed that those with no history of a shunt, lower motor level, and no history of hip or knee contracture release surgery were more likely to be ambulatory at the community level than at the household or wheelchair level.This study is the first to examine factors associated with ambulatory status in a large sample of individuals with myelomeningocele and nonmyelomeningocele subtypes of spina bifida. Results of this study delineate the breadth of strength and functional abilities within the different age groups and subtypes of spina bifida. The results may inform physicians of the characteristics of those with varying ambulatory abilities.

Background We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span. Objective The present paper describes the methodology used to update and expand this fourth edition of the Guidelines for the Care of People with Spina Bifida (“Guidelines”). This process was a fundamental initiative within the Spina Bifida Collaborative Care Network. Methods Working groups were formed consisting of international, multidisciplinary teams of clinical and research experts. A systematic review of multiple databases was conducted. The consensus building methodology, One-Text Procedure, was followed to draft and revise documents. Each section of the Guidelines was presented by working group chairs at a face-to-face meeting using the Nominal Group Technique (NGT). Results The Level 1 review resulted in 2449 abstracts being reviewed, and the Level 2 review resulted in 874 full text articles being archived for working groups. After working groups added and eliminated articles, a total of 803 manuscripts were included in the bibliography of the Guidelines. The final version of the Guidelines was then released in 2018. Conclusions Evidenced based-research and consensus methodologies were used to develop the fourth edition of the Guidelines. It is hoped that this document will guide not only health care providers, but also patients and families, so that people with Spina Bifida can have the best and most scientifically-based care and treatments throughout ever-longer and higher-quality lives.

Objective To estimate differences in the length of stay and costs for comparable hospitalizations of patients with spina bifida (SB) with and without pressure injuries. Design Retrospective, cross-sectional, observational study. Setting Nationwide Inpatient Sample from years 2010-2014. Participants Hospitalizations of patients with SB (N=7776). Hospitalizations among patients with SB and pressure injuries (n=3888) were matched to hospitalizations among patients with SB but without pressure injuries (n=3888). Interventions Not applicable. Main Outcome Measures Differences in length of stay and total costs between the 2 groups. Results After successful matching, multivariate modeling of costs and length of stay on matched sample showed that hospitalizations with pressure injuries had an increased 1.2 inpatient days and excess average costs of $1182 in 2014 dollars. Conclusions The estimated average cost of hospitalization increased by 10%, and the estimated average length of stay increased by 24% in the presence of pressure injuries among hospitalized patients with SB, compared with their peers without these injuries. These results highlight the substantial morbidity associated with pressure injuries, which are potentially preventable before or during hospitalizations among persons with SB.

BackgroundA mobile health (mHealth) system called iMHere (interactive mobile health and rehabilitation) was developed to support individuals with chronic conditions and disability in their self-management regimens. The initial design of iMHere, however, lacked sufficient accessibility for users with a myriad of dexterity impairments. The accessibility of self-management apps is essential in ensuring usability. ObjectiveThis study aims to increase the usability of the iMHere system for users with dexterity impairments by increasing the app’s accessibility. MethodsWe targeted the accessibility redesign by focusing on the physical presentation and the navigability of the iMHere apps. Six participants presenting with dexterity impairments were included in the usability study of the original and redesigned apps. ResultsWe observed a lower number of touches needed to complete tasks (P=.09) and time to complete individual tasks (P=.06) with the redesigned app than with the original app; a significantly lower time for users to complete all tasks (P=.006); and a significantly lower error rate (P=.01) with the redesigned app than with the original app. In fact, no errors occurred with use of the redesigned app. Participant-reported overall average usability of the redesigned app (P=.007) and usability of individual modules (P

Individuals with chronic conditions and disabilities who are vulnerable to secondary complications often require complex habilitative and rehabilitative services to prevent and treat these complications. This perspective article reviews the evolution of mHealth technologies and presents insights as to how this evolution informed our development of a novel mHealth system, iMHere (interactive mobile health and rehabilitation), and other technologies, including those used by the Veterans Administration. This article will explain the novel applications of mHealth for rehabilitation and specifically physical therapy. Perspectives on the roles of rehabilitation professionals in the delivery of health care using mHealth systems are included. Challenges to mHealth, including regulatory and funding issues, are discussed. This article also describes how mHealth can be used to improve patient satisfaction and delivery of care and to promote health and wellness.

Background People with spina bifida (SB) face personal and environmental barriers to exercise that contribute to physical inactivity, obesity, risk of cardiovascular disease, and poor aerobic fitness. The WHEEL rating of perceived exertion (RPE) Scale was validated in people with SB to monitor exercise intensity. However, the psycho-physiological link between RPE and ventilatory breakpoint (Vpt), the group-normalized perceptual response, has not been determined and would provide a starting point for aerobic exercise in this cohort. Objectives The primary objectives were to determine the group-normalized RPE equivalent to Vpt based on WHEEL and Borg Scale ratings and to develop a regression model to predict Borg Scale (conditional metric) from WHEEL Scale (criterion metric). The secondary objective was to create a table of interchangeable values between WHEEL and Borg Scale RPE for people with SB performing a load incremental stress test. Design Cross-sectional observational. Setting University laboratory. Participants Twenty-nine participants with SB. Methods Participants completed a load incremented arm ergometer exercise stress test. WHEEL and Borg Scale ratings were recorded the last 15 seconds of each 1-minute test phase. Outcome Measures WHEEL and Borg Scale ratings, metabolic measures (eg, oxygen consumption, carbon dioxide production). Determined Vpt via plots of oxygen consumption and carbon dioxide production against time. Results Nineteen of 29 participants achieved Vpt (Group A). The mean ± standard deviation peak oxygen consumption at Vpt for Group A was 61.76 ± 16.26. The WHEEL and Borg Scale RPE at Vpt were 5.74 ± 2.58 (range 0-10) and 13.95 ± 3.50 (range 6-19), respectively. A significant linear regression model was developed (Borg Scale rating=1.22 × WHEEL Scale rating + 7.14) and used to create a WHEEL-to-Borg Scale RPE conversion table. Conclusion A significant linear regression model and table of interchangeable values was developed for participants with SB. The group-normalized RPE (WHEEL, 5.74; Borg, 13.95) can be used to prescribe and self-regulate arm ergometer exercise intensity approximating the Vpt. Level of Evidence II

Over the last five decades, healthcare advances have yielded quantum improvements in life expectancy for individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related healthcare issues, while adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This manuscript outlines identified research needs.

To determine whether sledge hockey players with physical disability have higher average seated pressures compared to non-disabled controls.Fifteen age-matched controls without physical disability and 15 experimental participants with physical disability were studied using a pressure mapping device to determine risk for skin pressure ulceration and the impact of cushioning and knee angle positioning on seated pressure distributions.Regardless of participant group, cushioning, or knee angle, average seated pressures exceeded clinically acceptable seated pressures. Controls had significantly higher average seated pressures than the disability group when knees were flexed, both with the cushion (p = 0.013) and without (p = 0.015). Knee extension showed significantly lower average pressures in controls, both with the cushion (p 0.001) and without (p 0.001). Placement of the cushion resulted in significantly lower average pressure in controls when knees were extended (p = 0.024) but not when flexed (p = 0.248). Placement of the cushion resulted in no difference in pressure (p = 0.443) in the disability group.Pressures recorded indicate high risk for skin ulceration. Cushioning was effective only in the control group with knees extended. That knee extension significantly lowered average seated pressures is important, as many sledge hockey players utilize positioning with larger knee flexion angles. Implications for Rehabilitation Ice sledge hockey is a fast growing adaptive sport. Adaptive sports have been associated with several positive improvements in overall health and quality of life, though may be putting players at risk for skin ulceration. Measured static seated pressure in sledges greatly exceeds current clinically accepted clinical guidelines. With modern improvements in wheelchair pressure relief/cushioning there are potential methods for improvement of elevated seated pressure in ice hockey sledges.

Spina bifida (SB) is the most common birth defect in United States that results in permanent lifelong disability according to the Spina Bifida Association. Advancements in medical care have led to a longer life span and an increase in the risk of secondary conditions, for example, obesity, with age. The need to maintain a healthy and active lifestyle is even stronger in adults with SB than the general population. Our objective was to fill a gap in the literature by highlighting the current state of the literature on health-related measures of fitness, exercise, and physical activity (PA) in adults with SB. PubMed and Ovid were searched for articles by using the terms "spina bifida or myelomeningocele and exercise," published between January 1, 1988 and May 10, 2012. Results of studies showed that adults with SB had an inactive lifestyle, lower aerobic capacity, decreased level of daily PA, higher prevalence of obesity, and lower health-related quality of life compared with reference groups. Therapeutic interventions reduced pain, increased biomechanical efficiency during wheelchair propulsion, and improved PA and balance. Overall, the quality of the evidence on PA, exercise, and health-related measures of fitness is low in SB. Given misdistribution of adipose tissue, short stature, scoliosis, and joint contractures, future research should be conducted to determine the most reliable and low-cost methods of measuring body composition and to establish norms. Other reference standards, for example, aerobic capacity, require further development. Studies are needed to investigate lifestyle interventions that facilitate PA and exercise, and to determine the amount of exercise required to reduce secondary conditions as people with SB age.

Objective This study uses the Life Course Model for Spina Bifida (SB) to advance knowledge of factors associated with change in quality-of-life (QOL) among emerging adults with SB. Design Forty-eight participants (mean [SD], 22.04 [2.16] yrs) completed self-report questionnaires at two time points, 15 mos apart. Four QOL domains (physical health, psychological, social relationships, and environment) were measured using the World Health Organization QOL-BREF version. SB clinical data were collected via chart reviews. Paired t tests and reliable change indices evaluated group- and individual-level QOL change, respectively. Multiple regression analyses tested the contributions of the Life Course variables in explaining change in QOL over time. Results No significant group-level differences in the QOL domains were found between time 1 and time 2, but there was substantial individual variation in QOL over time. SB severity was related to a decline only in psychological QOL (B = -0.68, P = 0.02). Increased pain was associated with reduced physical health (B = -0.29, P = 0.049) and psychological (B = -0.29, P = 0.03) QOL at time 2, whereas greater family satisfaction was related to improved QOL in several domains. Conclusions Clinicians should be aware of the negative impact of pain and the protective influence of family satisfaction on QOL in emerging adults with SB.

The torque generation capability of muscles often reduces during a functional electrical stimulation (FES) session due to the rapid onset of muscle fatigue. Hybrid rehabilitation systems that use FES and electric motor assist may overcome this issue. The primary control challenge in such a system is how to allocate control inputs between electric motor and FES during muscle fatigue and muscle recovery. One strategy is to switch between FES and the electric motor by using an estimate of the muscle fatigue. This would allow the system to switch from using FES to using the electric motor when the muscle torque output has significantly decreased, then switch back to FES once the muscles have sufficiently recovered. This paper uses a second order sliding mode controller cascaded with a feedback linearization controller for a switched, FES and electric motor, system. The second order sliding mode is achieved through the use of a variable-gain super-twisting algorithm. A Lyapunov stability analysis was used to prove asymptotic stability of the switched control system. Simulations of the developed controller on a hybrid knee extension model illustrate that prolonged knee movements can be elicited through the switched system.

This article, approved by the Rehabilitation Engineering & Assistive Technology Society of North America Board of Directors on December 23, 2013, shares typical clinical applications and provides evidence from the literature supporting the use of wheelchair standers.

Background Individuals with spina bifida (SB) are vulnerable to chronic skin complications such as wounds on the buttocks and lower extremities. Most of these complications can be prevented with adherence to self-care routines. We have developed a mobile health (mHealth) system for supporting self-care and management of skin problems called SkinCare as part of an mHealth suite called iMHere (interactive Mobile Health and Rehabilitation). The objective of this research is to develop an innovative mHealth system to support self-skincare tasks, skin condition monitoring, adherence to self-care regimens, skincare consultation, and secure two-way communications between patients and clinicians. Methods In order to support self-skincare tasks, the SkinCare app requires three main functions: (1) self-care task schedule and reminders, (2) skin condition monitoring and communications that include imaging, information about the skin problem, and consultation with clinician, and (3) secure two-way messaging between the patient and clinician (wellness coordinator). The SkinCare system we have developed consists of the SkinCare app, a clinician portal, and a two-way communication protocol connecting the two. The SkinCare system is one component of a more comprehensive system to support a wellness program for individuals with SB. Results The SkinCare app has several features that include reminders to perform daily skin checks as well as the ability to report skin breakdown and injury, which uses a combination of skin images and descriptions. The SkinCare app provides reminders to visually inspect one’s skin as a preventative measure, often termed a “skin check.” The data is sent to the portal where clinicians can monitor patients’ conditions. Using the two-way communication, clinicians can receive pictures of the skin conditions, track progress in healing over time, and provide instructions for how to best care for the wound. Conclusions The system was capable of supporting self-care and adherence to regimen, monitoring adherence, and supporting clinician engagement with patients, as well as testing its feasibility in a long-term implementation. The study shows the feasibility of a long-term implementation of skincare mHealth systems to support self-care and two-way interactions between patients and clinicians.

Aim In this multicentre cross-sectional study we aimed to identify whether self-management ability and healthcare service delivery factors were related to preventable conditions [urinary tract infections (UTIs), pressure ulcers] and healthcare utilization [emergency room (ER) visits, hospitalizations] specifically in a sample of young adults with myelomeningocele. Background Spina bifida is one of the most common congenital birth defects, affecting over 166000 individuals living in the USA. Participants completed a questionnaire comprised of a self-report measure of healthcare services (Patient Assessment of Chronic Illness Care), recent healthcare utilization and preventable medical conditions. A structured clinical interview [Adolescent Self-Management and Independence Scale 2 (AMIS)] was administered to assess self-management. Multiple linear regression models were run to explore individual and combined effects of the AMIS, Patient Assessment of Chronic Illness Care, condition severity variables (shunted hydrocephalus, lesion level) and demographic factors in explaining variability in ER visits, hospitalizations, UTIs and pressure ulcers. Results Higher number of UTIs were associated with no history of shunting, lower educational levels, higher employment levels and lower AMIS scores (adjusted R2=0.774, P=0.002). Higher number of ulcers was associated with higher motor level and higher educational level (adjusted R2=0.378, P=0.017). Higher number of hospitalizations was associated with higher number of wounds and lower AMIS scores (adjusted R2=0.544, P=0.012). A significant model for ER visits was not identified. Conclusions Initiatives aimed at improving self-management skills or providing support for skin and bladder care may be warranted for those with high levels of motor impairment or lower educational levels. Better detection of wounds may be seen in those with higher employment levels. Spina bifida is a complex condition, but one whose most prevalent concomitant secondary conditions may be preventable through simple measures that improve self-management and through health educational initiatives targeted to specific patient groups. © 2011 Blackwell Publishing Ltd.