Margaret A. Turk

The health status of women with cerebral palsy.

OBJECTIVE To determine preliminary associations between collected health status variables of women with cerebral palsy (CP) residing in the community. DESIGN Cross-sectional study using survey research. PARTICIPANTS Sixty-three women residing in the community were administered the Telephone Questionnaire when contacted to arrange their visit to the study site located within the medical clinic of a local developmental services office. During the course of their visit to the study site, all 63 women completed the CP Study Protocol, in addition to the Mail-in Questionnaire upon completion of study participation. The women ranged in age from 20 to 74 years. MAIN OUTCOME MEASURES Health status, consisting of four elements: (1) self-reported health status; (2) associated conditions; (3) secondary conditions; and (4) health behaviors (alcohol and tobacco use, physical activity, diet, and health care visit). RESULTS Women with CP residing in community living arrangements perceived themselves as healthy. The majority of women did not smoke (98%), had not consumed alcohol in the previous month (95%), and ate a balanced diet (52%). Participants also reported engaging in common physical activities (83%) and stretching and doing range-of-motion exercises in the previous week (43%), and participation in aerobic exercise in the previous week (43%). Sixty-eight percent (41 of 60) of the women walked, and more than 50% of the women did not require assistance with activities of daily living. The ability to walk and the use of a wheelchair were associated with participation in the common physical activities. The women reported associated conditions of mental retardation (34%), learning disabilities (26%), and a seizure history (40%). Additionally, the women in the sample reported the occurrence of several secondary conditions common among individuals with CP, including pain (84%), hip and back deformities (59%), bowel problems (56%), bladder problems (49%), poor dental health (43%), and gastroesophageal reflux (28%). Poor dental health was associated with a history of seizures, and associations were also found between pain and mental retardation, and between gastroesophageal reflux and mental retardation. CONCLUSIONS Women with CP residing in the community perceived themselves as healthy, and the observed health status measures (eg, self-reported health, associated conditions, secondary conditions, and selected health behaviors) support this concept. For the most part, independent relationships were found between several of these measures indicating no significant association among the variables. Where associations were found, however, such as between walking and participation in physical activity, further investigation is warranted for a better understanding of their ramifications in the design of health promotion activities for women with CP.

The Effects of Peroneal Nerve Functional Electrical Stimulation Versus Ankle-Foot Orthosis in Patients With Chronic Stroke A Randomized Controlled Trial

Background. Evidence supports peroneal nerve functional electrical stimulation (FES) as an effective alternative to ankle-foot orthoses (AFO) for treatment of foot drop poststroke, but few randomized controlled comparisons exist. Objective. To compare changes in gait and quality of life (QoL) between FES and an AFO in individuals with foot drop poststroke. Methods. In a multicenter randomized controlled trial (ClinicalTrials.gov #NCT01087957) with unblinded outcome assessments, 495 Medicare-eligible individuals at least 6 months poststroke wore FES or an AFO for 6 months. Primary endpoints: 10-Meter Walk Test (10MWT), a composite of the Mobility, Activities of Daily Living/Instrumental Activities of Daily Living, and Social Participation subscores on the Stroke Impact Scale (SIS), and device-related serious adverse event rate. Secondary endpoints: 6-Minute Walk Test, GaitRite Functional Ambulation Profile (FAP), Modified Emory Functional Ambulation Profile (mEFAP), Berg Balance Scale (BBS), Timed Up and Go, individual SIS domains, and Stroke-Specific Quality of Life measures. Multiply imputed intention-to-treat analyses were used with primary endpoints tested for noninferiority and secondary endpoints tested for superiority. Results. A total of 399 subjects completed the study. FES proved noninferior to the AFO for all primary endpoints. Both the FES and AFO groups improved significantly on the 10MWT. Within the FES group, significant improvements were found for SIS composite score, total mFEAP score, individual Floor and Obstacle course time scores of the mEFAP, FAP, and BBS, but again, no between-group differences were found. Conclusions. Use of FES is equivalent to the AFO. Further studies should examine whether FES enables better performance in tasks involving functional mobility, activities of daily living, and balance.

Health, mortality, and wellness issues in adults with cerebral palsy

For many years, children with cerebral palsy (CP) and their parents have been told that health and functional status stabilize by early adulthood. However, adults with CP report ongoing health conditions and aging and secondary conditions that are not always recognized or managed by their healthcare providers. There is a growing body of literature to better define the health, mortality, and wellness of those aging with CP. In general, adults with CP report good health, although health outcomes appear to be linked to the severity of CP and to increasing age. Studies reporting on lifespan warrant caution in interpretation because of biases in the survey and surveillance systems. It appears that lifespan of persons with CP is at or close to that of the typical population. The most commonly reported age‐related changes and secondary conditions involve pain/fatigue, physical performance, and the musculoskeletal system. Not all adults have serious health problems, and many now recognize the aging process as a natural course of events. Few adults with CP engage in typical screening and health promotion activities due to a variety of barriers. There continues to be much to be learned and disseminated, in order to improve the care of adults with CP.

The myth and reality of disability prevalence: measuring disability for research and service.

The concept of disability has medical, functional, and social components. We review the frameworks for the definition of disability and endorse a multidimensional approach that is parsimonious and has utility for epidemiology. We need to be able to count people with disabilities to quantify service and support needs, to study the life course of people with specific disabilities, and to accurately target prevention strategies. In addition, it is important to have some precise measures of disability so comparisons can be made between impairments, to identify disparities and differences, and to measure changes over time. We need to ensure that there is no confusion about cause and effect (attributing associated conditions as outcomes of disability when they are in fact the cause of the functional limitation) and that comparisons to people without disabilities are fair. If people who experience disability due to a condition such as obesity are included in the case definition of disability, then we cannot say people with disability are more likely to be obese. The credibility of disability epidemiology and the disability field is at stake.

Incidence, Prevalence, and Characteristics of Fractures in Children, Adolescents, and Adults With Spina Bifida

Abstract Objective: To determine the age-specific incidence, prevalence, and characteristics of fractures in persons with spina bifida. Design: Year-long historical cross-sectional study. Subjects: Two hundred twenty-one consecutive patients aged 2-58 years evaluated in 2003 at a regional referral center. Twenty percent (n = 44) were children age 2-10 years; 30% (n = 68) were adolescents age 11- 18 years; and 50% (n = 1 09) were adults age 19-58 years. Fifty-five percent (n = 121) were female; 64% (n = 141) had shunted hydrocephalus. Fifty-eight percent (n = 129) were community ambulators. Defect levels included 14% (n = 31) thoracic; 37% (n = 81) mid-lumbar; 35% (n = 79) low-lumbar; and 14% (n = 30) sacral. Methods: Chart review of 221 consecutive children, adolescents, and adults enrolled in a spina bifida program in Syracuse, New York, was used to determine incidence and prevalence rates. Chi-square was used for subgroup analyses, and linear regression was used to examine independent association of motor level, functional independence (Functional Independence Measures score), body mass index (BMI), shunted hydrocephalus, epilepsy, and/or other congenital anomalies with fractures, controlling for insurance status, race/ethnicity, age, and sex. Results: Annual incidence of fractures among children, adolescents, and adults was 23/1000; 29/1000; and 18/1000, respectively. Overall prevalence was 200/1000. One in 4 patients with fractures reported multiple fractures. Median age at first fracture was 11 years. Most fractures involved the femur or tibia. Comparisons between adult- and childhood-onset fractures were not significant for difference in sex, BMI, defect level, functional independence, shunted hydrocephalus, epilepsy, or other congenital anomalies. In regression models only defect level RR = 1.646 (P = 0.019; 95% 01 .085-2.498) and age RR = 1.033 (P=0.036; 95% Cl 1.002-1.065) were independently associated with fractures. Conclusions: Fractures in persons with spina bifida are most common during early adolescence. Environmental modifications may be more effective than pharmacological treatment in reducing the prevalence of fractures in this population.

Long-Term Follow-up to a Randomized Controlled Trial Comparing Peroneal Nerve Functional Electrical Stimulation to an Ankle Foot Orthosis for Patients With Chronic Stroke:

Background. Evidence supports peroneal nerve functional electrical stimulation (FES) as an effective alternative to ankle foot orthoses (AFO) for treatment of foot drop poststroke, but few long-term, randomized controlled comparisons exist. Objective. Compare changes in gait quality and function between FES and AFOs in individuals with foot drop poststroke over a 12-month period. Methods. Follow-up analysis of an unblinded randomized controlled trial (ClinicalTrials.gov #NCT01087957) conducted at 30 rehabilitation centers comparing FES to AFOs over 6 months. Subjects continued to wear their randomized device for another 6 months to final 12-month assessments. Subjects used study devices for all home and community ambulation. Multiply imputed intention-to-treat analyses were utilized; primary endpoints were tested for noninferiority and secondary endpoints for superiority. Primary endpoints: 10 Meter Walk Test (10MWT) and device-related serious adverse event rate. Secondary endpoints: 6-Minute Walk Test (6MWT), GaitRite Functional Ambulation Profile, and Modified Emory Functional Ambulation Profile (mEFAP). Results. A total of 495 subjects were randomized, and 384 completed the 12-month follow-up. FES proved noninferior to AFOs for all primary endpoints. Both FES and AFO groups showed statistically and clinically significant improvement for 10MWT compared with initial measurement. No statistically significant between-group differences were found for primary or secondary endpoints. The FES group demonstrated statistically significant improvements for 6MWT and mEFAP Stair-time subscore. Conclusions. At 12 months, both FES and AFOs continue to demonstrate equivalent gains in gait speed. Results suggest that long-term FES use may lead to additional improvements in walking endurance and functional ambulation; further research is needed to confirm these findings.

Inpatient and Emergency Room Visits for Adolescents and Young Adults With Spina Bifida Living in South Carolina

To compare emergency room (ER) and inpatient hospital (IP) use rates for persons with spina bifida (SB) to peers without SB, when transition from pediatric to adult health care is likely to occur; and to analyze those ER and IP rates by age, race, socioeconomic status, gender, and type of residential area.

The United States' response to the World Report on Disability.

ABSTRACTThe 2011 Annual Disability Status Report notes a disability prevalence rate of 12.1% in the United States. People with disabilities of all ages are increasing in prevalence, and the prevalence increases with age. People with disabilities are high users of health care, have less social participation, and have a higher risk for poverty. Although the United States has a robust history of policy and legislation related to disability and rehabilitation, the ratification of the United Nations Conventions on the Rights of People with Disabilities recently failed in the United States Congress. However, in general, the United States is positioned fairly well regarding most aspects of rehabilitation including a strong rehabilitation science providing a sound base for evidence-based practice. Three key areas of further development emerge: education about disability and benefits of rehabilitation to decision makers and administrators who are concerned with the implementation of the Affordable Care Act, advocacy for a more robust organized presence and acknowledgement of rehabilitation science and research, and advocacy for education about disability and rehabilitation for physicians-in-training.

What are the implications of the big data paradigm shift for disability and health

In science there are occasionally paradigm shifts that impact numerous fields. We are in the midst of one of these shifts right now. The era called ‘‘Big Data’’ is characterized by ‘‘high variety, high volume, and/or high-velocity information data sets.’’ Computer scientists and geneticist who manage extremely large datasets instigated the movement toward Big Data and found it has spread to all aspects of health science. There have been increasing numbers of publications using big data, many commentaries and descriptions of big data in the literature, and academic departments devoted to bioinformatics and accessing/analyzing big data. A recent review of Big Data in clinical medicine revealed challenges remain in terms of completeness and quality of the data. The implications for disability and health are clear, so we feel the need to review some of the relevant aspects to our field. The concept of high volume is self-explanatory; that is, there are more variables and more observations than are typically expected in standard datasets. Often the magnitude is hundreds fold higher than prior datasets. The concept of high-variety is understood to mean data from a variety of data sources that are brought together into a single dataset. This is what disability and health researchers refer to as a merged dataset, and the future offers opportunities to expand the reach of these disparate, combined datasets. Finally, the concept of high-velocity data refers to compiling and analyzing in near real-time, using algorithms to assemble data into a useable dataset. Again, in disability and health we have referred to these datasets as ‘‘data cubes’’ that can reconfigure data on command. Many of our readers are population-based researchers and epidemiologists who have been using secondary data sources to answer questions about disability and health, for years. The secondary data sources used by disability and health researchers are typically nationally acquired datasets from the National Center for Health Statistics (NCHS) such as National Health Interview Study (NHIS) and Medical Expenditure Panel Study (MEPS), National Ambulatory Medical Care Survey, National Hospital Discharge Survey, National Health and Nutrition Examination Survey (NHANES) and the Longitudinal studies of Aging. Also on the national level we use the

Pediatric rehabilitation medicine subspecialty training.

J O t D he population of children with disabilities has increased dramatically during the past 40 ears, with the greatest increase (from 2% to 7% of those reporting a disability in a ational database) occurring in the last 15 years [1]. The number of adults with childhoodnset disabilities also has increased, with an estimated 500,000 each year reaching age 18 ears [2] and therefore transitioning into adult health-care services. With one-third of the orld’s population defined as children [3], it is expected that the number of these patients ill continue to increase. Consequently, the health and rehabilitation care for children and dults with childhood-onset disabilities must continue to be an important part of physical edicine and rehabilitation (PM&R) training. Pediatric rehabilitation medicine (PRM) is a subspecialty within the field of PM&R that rovides rehabilitation medicine management for children with physical and cognitive mpairments. PRM, one of the oldest subspecialties within PM&R, became a board-certified ubspecialty in 1999, with the first examination given in 2003. The growth of the subspeialty is directly linked to the advancements of medical science and improvements in edical care. PRM includes the full spectrum of the PM&R specialty but with emphasis on ediatric specific diagnoses, and the influence of growth and development on medical and ehabilitation goals and interventions. Besides the typical pediatric diagnoses and conditions anticipated with younger age roups (eg, cerebral palsy, spina bifida, genetic disorders, congenital myopathies), pediatric hysiatrists manage children and adolescents with traumatic brain injury, spinal cord njury, amputations, or chronic pain typically encountered by the adult physiatrist. The nowledge of new onset, evolving, and lifelong disabilities and the enabling/disabling rocess gained from general PM&R enhances pediatric physiatrists’ abilities to manage hildren with disabilities through a lifetime. There are 2 pathways to enter the subspecialty training for PRM. For those who have ompleted the general PM&R residency training program, an additional 2 years are equired. Those trained through the combined programs (see the section “Combined raining Program”) are required to complete an additional year of fellowship. Either athway requires 6 years of training in total. Although more common before 2000, there are lso physiatrists who have completed training separately in pediatrics and PM&R, totaling years of training; fellowship would now be required for PRM certification.