Disability and Health Journal - Articles in Press

Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors - Corrected Proof

2010-03-02

Abstract: Background: From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range. It is not well studied whether, for children within this ASD subgroup, there is variation in the risk for low IQ based on a child's perinatal risk factors.Objective/Hypotheses: We assessed whether preterm delivery and term small-for-gestational-age (tSGA) were associated with various measures of cognitive deficit among children with ASDs.Methods: A sample of 1129 singleton children born in 1994 and identified through school and health record review as having an ASD by age 8 years were selected from a U.S. population-based surveillance network. Mean IQ and dichotomous IQ outcomes indicating various levels of ID were examined according to whether a child was preterm (<37 weeks' gestation) or tSGA (term delivery and birth weight <10th percentile for gestational age of a U.S. referent). Results for the total sample and within race-ethnicity/maternal education strata were adjusted for child sex and ASD subtype classification.Results: Mean IQ was significantly (p < .05) lower in children delivered preterm (69.5) than term (74.5) and tSGA (69.3) than term appropriate-for gestational age (75.3). In stratified analyses, the preterm-IQ association was significant only among non-Hispanic white (NHW) children with maternal education at birth of high school or less; adjusted mean IQ was 8 points lower among those delivered preterm (65.4) than term (73.8). Term-SGA was associated with a significant 8-point deficit in adjusted mean IQ (75.5 vs. 83.8) in NHW children with maternal education greater than high school and a 6-point deficit that approached significance (68.4 vs. 74.5, p=0.10) in NHW children with maternal education of high school or less. Non-Hispanic black children in both maternal education groups had significantly lower mean IQs than NHW children with little variation by preterm or tSGA.Conclusions: In children with ASDs, the risk for concurrent ID or IQ deficit is associated with both preterm delivery and tSGA; these associations may vary by race-ethnicity and SES. Further studies of ASD-ID co-occurrence and the effectiveness of intervention strategies should consider both perinatal and sociodemographic factors.

Stroke in young adults - Corrected Proof

Charles Ellis — 2010-03-02

Abstract: Background: Stroke among young adults is generally considered a rare event, although few studies have considered national data.Objective: The objective of this paper was to profile stroke in young adults in the United States using a national dataset.Methods: Data from the 2007 Nationwide Inpatient Sample were examined to estimate the number of patients, mean length of stay, mean costs, and discharge disposition of young adults (aged 18-44 y) with a diagnosis of stroke.Results: Estimates indicate that 41,587 (or 4.9%) of individuals experiencing a stroke in 2007 were young adults: 32,438 had an ischemic stroke, 4662 had a subarachnoid hemorrhage, and 4487 had an intracerebral hemorrhage. The average length of stay was 4.7 days for ischemic stroke, 11.6 days for subarachnoid hemorrhage, and 11.2 days for intracerebral hemorrhage. Approximately 5% (2013) of young adults died of stroke. Most young adults were discharged routinely to home at an average cost associated with their hospital stay of $34,886 for ischemic stroke, $146,307 for subarachnoid hemorrhage, and $94,482 for intracerebral hemorrhage.Conclusions: A substantial number of young adults experience stroke in the United States at costs that are higher than those for stroke patients overall.

Prevalence of disability among adolescents and adults in rural China - Corrected Proof

2010-02-22

Abstract: Background: Disability affects health status and quality of life; however, insufficient research has been done in developing countries using internationally accepted measurements.Objective: We investigated disabilities, sociodemographics, health indicators, and health behaviors using a sample of rural residents in northern China. We reported disability prevalence by age for our study sample and for a sample of rural residents who participated in the 1999-2002 Colorado Disability Survey.Methods: Face-to-face interviews were conducted in 2008, and complete questionnaires were obtained from 2199 individuals 15 years old or older. The definition of disability was conceptually based on the International Classification of Functioning, Disability and Health.Results: Of those who completed the survey, 154 (7.0%) reported having disabilities. The prevalence was 2.3% for limitations in activities of daily living (ADL) and 3.1% for limitations in instrumental activities of daily living (IADL). Significant differences in the disability prevalence were found across the categories of education, age, and marital status. Among individuals with disabilities, 54.6% rated their health status as poor or very poor compared to 13.4% of people without a disability. A strong association was seen between disability status and injury. A large proportion (79.9%) of persons with disabilities, as well as 82.2% of persons without disabilities, reported paying for their medical expenses out-of-pocket. The age pattern of disabilities (ADL and IADL) was similar to that seen in a rural Colorado population.Conclusions: Many rural Chinese individuals with disabilities report poor general health and may face further limitations in their daily activities and social participation without accessible and affordable health care.

Mood disorders and physical functioning difficulties as predictors of complex activity limitations in young U.S. adults - Corrected Proof

Bruce S. Jonas, Mitchell Loeb — 2010-01-08

Abstract: Background: There is established research that shows associations between basic physical functional difficulties and complex activity limitations. In addition, there is some research that shows associations between mood disorders and complex activity limitations. However, there is limited research looking at the joint association between mood disorders and physical functioning and complex activity limitations. Furthermore, because mood disorders and physical functioning limitations increase with age, there is a lack of information available on younger adults.Objectives: We assess the impact of mood disorders and physical function difficulties as predictors of complex activity limitations in young U.S. adults, using data from a national survey.Methods: We use data from the Third National Health and Nutrition Examination Survey (NHANES III) among young U.S. adults 17 to 39 years of age. Selected basic actions difficulties include physical functioning difficulties (motor, visual, or hearing difficulties) and mood disorders (major depressive disorder, dysthymia, or bipolar disorder). Selected complex activity limitations include limitations in activities of daily living (ADLs) (walking inside the home, standing from a chair, getting into and out of bed, eating, and dressing), instrumental activities of daily living (IADLs) (doing chores around the house, preparing meals, and managing money), and/or specific major life activities (limitations in the kind or amount of work or housework they could perform, or being limited in any way because of an impairment or health problem).Results: The prevalence of basic actions difficulty (physical functioning and/or mood disorder difficulties) among young adults is 34%. Among the young adults with basic actions difficulty, nearly 39% have mood disorders. The prevalence rates for ADL/IADL, major life activities, and any complex activity limitation are 8.6%, 8.1%, and 13.6%, respectively. Compared with young adults with no basic actions difficulties, the results showed that young adults with mood disorders alone had elevated adjusted odds ratios (2.5) for limitations in ADLs and/IADLs. For all the complex activity limitations analyzed, compared to those with no basic actions difficulties, young adults with physical functioning difficulties alone had substantially higher adjusted odds ratios (5.4-8.7) and young adults with comorbid mood disorder and physical functioning difficulties had the highest observed odds ratios (9.7-14.0).Conclusions: The data suggest a stronger risk of complex activity limitations when mood disorders coexist with physical functioning difficulties, leading to potential interference with a person's ability to accomplish the ADLs/IADLs or major life activities measured in this study. Given the magnitude of basic actions difficulty prevalence, and particularly the substantial contribution of mood disorders to this prevalence, further examination of the mental health component of basic actions difficulty is warranted. A possible area for future research could explore coordinated efforts to reduce physical and mental difficulties and facilitate the accomplishment of complex activities.

Summative evaluation of a pilot aquatic exercise program for children with disabilities - Corrected Proof

Maria Fragala-Pinkham, Margaret E. O'Neil, Stephen M. Haley — 2010-01-08

Abstract: Background: Children with disabilities have lower physical activity levels and participate less in community-based sport and exercise programs than do children without disabilities. This in part is due to environmental barriers and lack of appropriate resources in these programs. Adaptive programs encouraging increased physical activity for children with disabilities are needed, and as these programs are developed, they should be critically evaluated.Purpose: The purposes of this article are to describe a pilot aquatic exercise program for children with disabilities, to evaluate the program, and to determine areas of strength and areas needing modifications.Methods: A summative program evaluation design was used to assess this twice per week aquatic exercise program lasting 14 weeks. Sixteen children, ages 6-12 years, with developmental disabilities participated in the program. Children swam laps, participated in relay races and water basketball games, and performed arm and leg strengthening exercises using aquatic noodles, foam barbells, and water for resistance. Swimming skills, program evaluation questionnaires, physical activity questionnaires, and interviews of pool site directors were used to determine program outcomes.Results: Findings suggest that children made improvements in their swimming skills, parents were satisfied with the program, and children increased their physical activity levels during the program and maintained the increased physical activity levels six months after the program ended. The program continued in some form after the 14-week intervention ended.Conclusions: The program was successful in achieving its objectives and recommendations for application of this program are provided.

Methodological issues in monitoring health services and outcomes for stroke survivors: A case study - Corrected Proof

2010-01-08

Abstract: Background: Obtaining comprehensive health outcomes and health services utilization data on stroke patients has been difficult. This research grew out of a memorandum of understanding between the National Institutes of Health and the Istituto Superiore di Sanità (its Italian equivalent) to foster collaborative research on rehabilitation.Objective: The purpose of this study was to pilot a methodology using administrative data to monitor and improve health outcomes for stroke survivors in Tuscany.Methods: This study used qualitative and quantitative methods to study health resources available to and used by stroke survivors during the first 12 months poststroke in two Italian health authorities (AUSLs 10 and 11). Mortality rates were used as an outcome measure.Results: Number of inpatient days, number of prescriptions, and prescription costs were significantly higher for patients in AUSL 10 compared with AUSL 11. There was no significant difference between mortality rates.Conclusion: Using administrative data to monitor process and outcomes for chronic stroke has the potential to save money and improve outcomes. However, measures of functional impairment and more sensitive outcome measures than mortality are important. Additional recommendations for enhanced data collection and reporting are discussed.

Changes in autism spectrum disorder prevalence in 4 areas of the United States - Corrected Proof

2010-01-04

Abstract: Background: We sought to describe autism spectrum disorder (ASD) population characteristics and changes in identified prevalence across 3 time periods.Methods: Children with a potential ASD were identified through records abstraction at multiple sources with clinician review based on Diagnostic and Statistical Manual (DSM-IV-TR) criteria. Multisite, population-based data from the Autism and Developmental Disabilities Monitoring (ADDM) Network were analyzed from areas of Arizona (AZ), Georgia (GA), Maryland (MD), and South Carolina (SC). Participants were 8-year-old children (born in 1992, 1994, or 1996) in 2000, 2002, or 2004 (and children born in 1988 residing in metropolitan Atlanta in 1996) who had been evaluated for a variety of developmental concerns at education and/or health sources.Results: From 2000 to 2004, the identified prevalence of the ASDs per 1,000 8-year-old children showed significant increases of 38% in GA and 72% in MD and a nonsignificant increase of 26% in AZ. ASD prevalence was relatively stable in SC with a nonsignificant decrease of 17%. Males had a higher identified prevalence of ASD in all years. Increases among racial, ethnic, and cognitive functioning subgroups varied by site and surveillance year. More children were classified with an ASD by community professionals over time, except in AZ.Conclusions: There was a trend toward increase in identified ASD prevalence among 8-year-old children who met the surveillance case definition in 3 of the 4 study sites from 2000 to 2004. Some of the observed increases are due to improved ascertainment; however, a true increase in ASD symptoms cannot be ruled out. These data confirm that the prevalence of ASDs is undergoing significant change in some areas of the United States and that ASDs continue to be of urgent public health concern.

Disparities in patient-physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS) - Corrected Proof

Diane L. Smith — 2009-12-30

An error was discovered in the article “Disparities in patient-physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS),” (2009;2:206-215), by Diane L. Smith, Ph.D., OTR/L. The statistics given in the first paragraph under the heading Relationship between disability status and patient-physician communication, on page 209, were incorrect. The correct information is given below.

Modeling caregivers' perceptions of children's need for formal care: Physical function, intellectual disability, and behavior - Corrected Proof

2009-12-28

Abstract: Background: Like most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request.Objectives/Hypotheses: This research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers.Methods: The data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument.Results: The results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care.Discussion: Much of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.

Frequency of purchase and associated costs of assistive technology for Washington State Medicaid program enrollees with spina bifida by age - Corrected Proof

Alyssa M. Bamer, Frederick A. Connell, Brian J. Dudgeon, Kurt L. Johnson — 2009-12-28

Abstract: Background: Assistive technology (AT) is one strategy to mitigate or eliminate barriers to independence for individuals with disabilities, including those with spina bifida (SB). However, little is known about current use and costs of AT for people with SB, including the cost burden to medical insurance payees.Objective: The aim of this study was to evaluate frequency of AT purchases and their associated costs for individuals with SB covered by the Washington State Medicaid program. Additionally, we sought to compare Medicaid reimbursement for AT to the overall Medicaid reimbursement for all medical care for these individuals.Methods: Data included all electronic claims and eligibility records of persons covered by the Medicaid program over a 4-year period (2001-2004) who had at least one service with a coded diagnosis of SB. Procedure codes were reviewed and grouped into the following AT categories: manual wheelchairs, powered wheelchairs, wheelchair cushions and seats, wheelchair accessories and repairs, wheelchair rental, ambulatory aids, orthotic and prosthetic devices, positioning aids, bathroom equipment, beds and bed accessories, and communication and hearing aids. Age group analyses were conducted after dividing patients into 3 age groups (0-15, 16-25, and 26+). Further subgroup analyses were done for individuals with dual or capitated medical coverage compared with those who had fee-for-service Medicaid-only coverage.Results: A total of 984 individuals with at least one diagnosis of SB during the 4-year study period were identified. On average, approximately one third of individuals made claims for some type of AT per year; the majority of these AT claims (87%) were for mobility-related AT. Average annual Medicaid cost of AT was $494 per enrollee and AT accounted for 3.3% of all Medicaid costs for these individuals. AT-related costs were highest for those aged 0-15 years and lowest for those aged 16-25 years. Persons with only fee-for-service Medicaid coverage had more than twice the annualized Medicaid AT-related expenditures compared to those with additional coverage or who were covered under a Medicaid capitation plan.Conclusions: Medicaid reimbursement for AT, as classified in this study, is a relatively low percentage of overall medical costs for individuals with SB. Because of the small percentage of non-mobility-related AT paid for in this study, we believe there may be a substantial unmet need for AT in this population and/or that individuals with SB may have significant AT-related out-of-pocket expenses. Given its large potential impact and relatively low cost burden to Medicaid, AT is a “good buy” and coverage for AT should be expanded.

Quality of diabetes care for adults with developmental disabilities - Corrected Proof

2009-12-11

Abstract: Background: Given that individuals with developmental disabilities have a history of difficulty accessing appropriate health care, possess numerous risk factors for diabetes, and frequently have unique needs within the health care setting, it is important to conduct surveillance research to determine the quality of their diabetes care.Objective/Hypothesis: We assessed the quality of diabetes care for adults with developmental disabilities enrolled in Kansas Medicaid. Developmental disability was defined in accordance with Kansas Medicaid program eligibility and included individuals with intellectual disability, cerebral palsy, autism, and/or seizure disorder.Methods: We identified a retrospective cohort of persons with developmental disabilities who were also diabetic and continuously enrolled in Kansas Medicaid. We tracked their quality of care measures (HbA1c/glucose testing, cholesterol testing, eye examinations, microalbuminaria screening, and primary care visits) across the subsequent 12 months. Quality care measures were evaluated in relation to basic demographic variables and comorbid hypertension using unconditional logistic regression.Results: Among 5,960 adults with developmental disability, 666 had diabetes (11.2%). Annual testing rates were HbA1c/glucose testing, 51.7%; cholesterol, 44.3%; eye examinations, 29.3%; and microalbuminaria, 18.5%. Nearly all (93.5%) had contact with a primary care provider during the period. Comorbid hypertension was associated with higher rates of HbA1c, cholesterol testing, and primary care visits. Dual eligibility was associated with lower HbA1c/glucose testing and cholesterol testing rates but comparable rates for other measures. Caucasians were more likely to have had an eye examination but less likely to have had their microalbumin checked.Conclusions: Adults with developmental disabilities and diabetes who were enrolled in the Kansas Medicaid Program were screened at lower frequency than published national figures for key quality indicators of diabetes care. These results call for action to find approaches to improve their quality of care. Further work is needed to understand the barriers to appropriate care and incentives that will remedy these gaps. In addition, research is needed to determine the accuracy of diabetes identification, treatment, and monitoring of adults with developmental disabilities.

Benefits of wellness interventions for persons with chronic and disabling conditions: A review of the evidence - Corrected Proof

2009-12-11

Abstract: Background: Persons living with the effects of chronic and disabling conditions are often at increased risk for the development of secondary conditions and disabilities that can lead to further decline in health status, independence, functional status, life satisfaction, and overall quality of life.Objective: The purpose of this study was to review the evidence for the benefits of wellness/health promotion interventions for persons with chronic and disabling conditions.Methods: The authors conducted a Medline search (1990-2007) using terms related to wellness and health promotion cross-referenced with general terms for chronic and disabling conditions, as well as 15 specific chronic and/or disabling conditions (e.g., multiple sclerosis, spinal cord injury). Selection of studies was limited to those published in English that reported randomized controlled trails or prospective studies that involved adult human subjects with a chronic and/or disabling condition. All selected studies focused on some aspect of a wellness or health promotion intervention and involved a comparison or control group. Of the 5,847 studies initially identified in the search using medical subject heading terms, 190 met the criteria for full review. Data were extracted from these publications and summarized using descriptive statistics.Results: Almost all studies (95%) explored the effects of wellness intervention in a sample diagnosed with a single condition (e.g., cancer, stroke, arthritis). Although the mean sample size was 100, the range in sample size varied widely (6-688); 25% of the studies had sample of 30 or fewer. Almost all studies (89.5%) reported positive effects of the wellness intervention, although the delivery and content of interventions as well as the measurement of outcomes, varied greatly.Conclusions: Our findings support an immediate post-intervention positive impact of wellness interventions across persons with a wide variety of chronic and disabling conditions. Future research that clearly specifies primary study outcomes and follows the CONSORT guidelines will strengthen future reviews of the evidence and facilitate application of the evidence of practice.

The Kansas Medicaid Buy-In: Factors influencing enrollment and health care utilization - Corrected Proof

Jean P. Hall, Michael H. Fox, Emily Fall — 2009-11-30

Abstract: Background: Medicaid Buy-Ins are optional programs states may implement to create work incentives for people with disabilities. These programs allow participants to increase earnings without losing Medicaid eligibility—potentially moving them out of poverty without risking loss of health care coverage. They also provide the opportunity for beneficiaries to offset some of their medical costs to the federal and state governments through premiums for coverage and increased taxes paid. State and federal policy makers and administrators have speculated about who might enroll, how they might use the benefits, and whether positive health outcomes for persons with disabilities would result.Objective: We compared characteristics and health care utilization of 184 enrollees and 158 eligible nonenrollees in Kansas' Medicaid Buy-In.Results: Enrollees were older and significantly more likely to have more than one disability, with mental illness being more prevalent than physical disabilities, and to have both higher Social Security and earned income. A majority of the sample was dually eligible for Medicare and Medicaid with Medicaid paying most costs. Home health service costs were the primary difference between enrollee and nonenrollee expenditures.Conclusions: Increased Medicaid Buy-In enrollment could prevent long-term dependence on federal disability benefits.

Athletic identity, affect, and peer relations in youth athletes with physical disabilities - Corrected Proof

Deborah R. Shapiro, Jeffrey J. Martin — 2009-11-30

Abstract: Background: Theory-based investigations of the psychosocial aspects of youth participation in disability sport are underresearched, suggesting a need for more scholarly inquiry in this area. We sought to examine athletic identity, affect, and peer relations of youth athletes with physical disabilities and selected relationships among these variables.Methods: Participants (N=36) completed the Private-Public Athletic Identity Scale, the Positive and Negative Affect Schedule, and the Peer Relations Scale.Results: Participants reported stronger private athletic identity individual item scores (mean ≈ 4.0) compared with a public (mean=2.4) athletic identity and expressed much positive (mean=4.4) affect and low negative affect (mean=1.7). They also expressed strong peer relations (mean=5.0). A significant relationship (r=0.34, p < .05) between positive affect and peer relations existed.Conclusions: Friendships in and outside of disability sport may contribute to quality of life by promoting positive affective states such as feelings of joy, satisfaction, inspiration, excitement, and enthusiasm. In general, our results supported the potentially positive role that adapted sport can have on the well-being of youth with physical disabilities.

A pilot study of young adults with multiple sclerosis: Demographic, disease, treatment, and psychosocial characteristics - Corrected Proof

2009-11-30

Abstract: Background: Although multiple sclerosis (MS) is the most common neurologic disease disabling younger adults, very little is known about the characteristics of young adults with MS and the impact of MS on their lives.Objectives: To conduct a pilot study of the demographic, disease, treatment, and psychosocial characteristics of young adults with MS (aged 18 and 31 years).Methods: We solicited participation from all 452 members of the Registry of the North American Research Committee On Multiple Sclerosis (NARCOMS) Project aged 18 to 31 years, collecting data from 100 of these young adults (22%) by computer-assisted telephone interviews. Data included basic demographic, disease, and treatment characteristics, ratings of satisfaction with access to and quality of MS and mental health care, and beliefs about the impact of MS on their current and future lives.Results: Participants were 93% female and averaged 28.6 years of age, and 88% had relapsing-remitting MS. Forty-three percent received the majority of their MS-focused care at an MS clinic and 94% had seen a neurologist in the previous 12 months. More than 40% reported depressive symptoms at the time of the survey. These young adults with MS had relatively low rates of concern about the impact of MS in the present but higher rates of worry about their future.Conclusions: These findings suggest the need for a study with a larger, representative sample of young adults with MS to guide development of programs, interventions, and services tailored to meet their needs.

The Young Women's Program: A health and wellness model to empower adolescents with physical disabilities - Corrected Proof

Nancy Xenakis, Judith Goldberg — 2009-11-19

Abstract: Background: This article introduces a comprehensive health and wellness program that serves young women, ages 14 to 21, with physical disabilities. The program is a component of the Initiative for Women with Disabilities (IWD), a hospital-based center serving women with physical disabilities/conditions that offers accessible gynecology, primary care, physical therapy, nutrition consultations, exercise and fitness classes, and wellness and social work services. Recent literature has shown that young women with physical disabilities often face physical and emotional barriers to their own health and wellness. This group of adolescents often has difficulty developing a healthy image of their bodies, especially compared with their able-bodied peers. Unhealthy attitudes regarding the body image and sexuality of those with physical differences are often perpetuated by the media, peers, and parents. People with disabilities have become increasingly able to live fulfilling lives in recent decades. This is due largely to studies that have confirmed that once barriers are addressed and minimized, young women with physical disabilities lead active and productive lives and have much to contribute to society.Methods: The goal of the Young Women's Program (YWP), established in 2006, is to help young women adopt healthy lifestyles by exposing them to a carefully planned curriculum. The program provides a variety of classes and workshops, expert instruction, and access to resources and a network of peers and mentors. The ultimate goal is for the participants to apply the concepts learned in the group sessions to identify and evaluate their personal goals and develop health and wellness plans for achieving these goals.Results: Data were obtained from several sources: a self-administered program evaluation, program recruitment and retention statistics, and an assessment of whether individual health and wellness goals were achieved. All of these measures indicate a favorable response to the program structure and content. Participants are able to integrate and apply the learned concepts to alter aspects of their daily lifestyles and improve their self-confidence, self-worth, and self-competence.Conclusions: The results to date suggest that the YWP addresses the transitional challenges cited in the literature that young women with physical disabilities face from adolescence to adulthood. The structure of the program, which combines individual and group sessions, and the focused content appear to have a positive impact on the participants' lives by exposing them to experiences that promote self-determination and self-competence. By providing opportunities for socialization with peers and mentors and exposure to community resources, and by helping participants to develop self-care skills and to set goals for a healthy lifestyle, the program facilitates leading an independent life. The efficacy of the YWP will be determined by annual follow-up studies as participants enter adulthood.

Promoting physical activity in an adolescent and a young adult with physical disabilities - Corrected Proof

2009-11-19

Abstract: Background: We sought to describe the design of the Active Lifestyle and Sports Participation (ALSP) intervention for adolescents and young adults with physical disabilities, and to present the first 2 cases.Methods: A 17-year-old boy with myelomeningocele and hydrocephalus and a 23-year-old woman with unilateral cerebral palsy were enrolled into the ALSP intervention, a personalized intervention designed to improve physical activity and fitness levels. Main outcome measures were self-reported physical activity and aerobic fitness. Fitness was determined by submaximal 6-minute walk or wheel test and by maximal cycle or arm ergometer-exercise test. Participants rated satisfaction with the intervention on a Likert-type numeric scale from 1 to 10.Results: Improvements in self-reported physical activity were 51% and 75% for the male and female participant, respectively. Respective improvements in submaximal exercise were 16% and 9%. Maximal exercise increased 39% in the male participant but did not increase in the female participant. Satisfaction with the intervention was rated moderate-good to excellent.Conclusion: Data for the first 2 cases suggested that ALSP intervention seemed feasible to offer in an outpatient rehabilitation department, and the effectiveness may be promising. Future studies should determine the short- and long-term effectiveness of the intervention.

Sex differences in the evaluation and diagnosis of autism spectrum disorders among children - Corrected Proof

2009-11-09

Abstract: Background: One of the most consistent features of the autism spectrum disorders (ASDs) is the predominance among males, with approximately four males to every female. We sought to examine sex differences among children who met case definition for ASD in a large, population-based cohort with respect to age at first developmental evaluation, age of diagnosis, influence of cognitive impairment on these outcomes, and sex-specific behavioral characteristics.Methods: We conducted a secondary analysis of data collected for a population-based study of the prevalence of ASD. The sample comprised 2,568 children born in 1994 who met the case definition of ASD as established by the Autism and Developmental Disabilities Monitoring (ADDM) Network for ASD surveillance. Children who had a history of developmental disability and behavioral features consistent with the DSM-IV-TR criteria for autistic disorder, Asperger's disorder, and Pervasive Developmental Disorder–Not Otherwise Specified in existing evaluation records were classified as ASD cases via two paths: streamlined and nonstreamlined. Streamlined reviews were conducted if there was an ASD diagnosis documented in the records. Data were collected in 13 sites across the United States through the ADDM Network, funded by the Centers for Disease Control and Prevention.Results: Males constituted 81% of the sample. There were no differences by sex in average age at first evaluation or average age of diagnosis among those with an existing documented chart diagnosis of an ASD. Girls were less likely than boys to have a documented diagnosis (odds ratio [OR] = 0.76, p = .004). This analysis was adjusted for cognitive impairment status. In the logistic model, with the interaction term for sex and cognitive impairment, girls with IQ of 70 or less were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.70, 95% confidence interval [CI] = 0.50-0.97, p = .035). Boys with IQ greater than 70 were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.60, 95% CI = 0.49-0.74, p < .001). This finding (less likely to have a documented diagnosis) was also true for girls with IQ greater than 70 (OR = 0.45, 95% CI = 0.32-0.66, p < .001). Girls were more likely to have notations of seizure-like behavior (p < .001). Boys were more likely to have notations of hyperactivity or a short attention span and aggressive behavior (p < .01).Conclusions: Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Caregiver perceptions associated with risk of nursing home admission for people with multiple sclerosis - Corrected Proof

Robert J. Buchanan, Dagmar Radin, Chunfeng Huang, Li Zhu — 2009-11-05

Abstract: Background: About one quarter of people with multiple sclerosis (MS) will need long term care during their disease, with about 5% to 10% requiring extended nursing home care. The study objective was to identify perceptions of informal caregivers associated with the possibility of future nursing home admission for people with MS.Methods: Data were collected in a national survey of informal caregivers (78% were spouses) to people with MS. An ordered logistic regression model analyzed contributions that characteristics of the person with MS and caregiver made to the perceived probability of future nursing home admission.Results: Aging, bowel dysfunction, poorer health, and functional decline in the person with MS, as well as caregiver burden, were associated with increased probability of future admission. Higher family income and greater satisfaction with access to MS-focused care were associated with lower risk of nursing home admission.Conclusions: The rehabilitative, therapeutic, supportive, and maintenance services that contribute to MS-focused care could assist the person with MS and the caregiver adapt to the symptoms that interfere with the ability of the person with MS to function independently in daily life. Informal caregivers provided insights into factors associated with the perceived probability of future nursing home admission, gaining a better understanding of people with MS at risk for institutional care.

Understanding suicide and disability through three major disabling conditions: intellectual disability, spinal cord injury, and multiple sclerosis - Corrected Proof

2009-11-05

Background: Disability is not a category of disease but rather relates to the physical, sensory, cognitive, and/or mental disorders that substantially limit one or more major life activities. These functional limitations have been found to be predictive of suicide, with psychiatric comorbidities increasing the risk for suicide. Enormous gaps exist in the understanding of the relationship between disability and suicide.Objective: We reviewed the current literature addressing the prevalence of and risk factors for suicide among persons with three major disabling conditions and identify priorities for future research.Methodology: We performed a literature review investigating the relationship between three major disabilities (intellectual disability, spinal cord injury, multiple sclerosis) and suicide. To ensure thorough evaluation of the available literature, we searched PubMed, the Cochrane Library, and Google Scholar with terms including “suicide,” “disability,” “intellectual disability,” “spinal cord injury,” “multiple sclerosis,” and permutations thereof. By this method we evaluated 110 articles and included 21 in the review.Results: Suicide rates are significantly higher among persons with multiple sclerosis and spinal cord injury than in the general population. A more nuanced picture of suicide rates and risk factors exists for the intellectual disability population, in which it appears that rates of suicide risk factors are higher than among the general population while suicide rates may be lower. The highest rates of suicide are reported among study populations of persons with multiple sclerosis, followed by persons with spinal cord injury, and then individuals with intellectual disability.Conclusions: Suicide among persons with disabilities is a complex and pressing public health concern. Urgent research priorities include (1) valid estimates of suicide rates among persons with disabilities by age cohort; (2) assessment of the predictive importance of suicide risk factors; and (3) determination of best practices in preventing suicide. Working toward these objectives will reduce the unacceptable burden of this preventable cause of death and help children and adults with disabilities to lead happier, healthier, and longer lives.

An evaluation of health communication materials for individuals with disabilities developed by three state disability and health programs - Corrected Proof

2009-11-02

Abstract: Background: Health communication increasingly has been recognized as an important part of public health practice that can help raise awareness of potential health risks, influence attitudes and beliefs, and motivate individuals to change unhealthy behaviors. Yet, few health communication messages exist that target people with disabilities. An evaluation was conducted to assess the relevance and usefulness of health communication materials developed by or disseminated in, or both, three state disability and health programs.Methods: Health care providers and people with a variety of physical and sensory disabilities participated in the evaluation. Qualitative and quantitative data were collected in each of the three states using key informant interviews, focus groups, and a Web-based provider survey.Results: State program staff reported that health communication strategies and messages should be developed to improve access and remove barriers to health care, provide access to facilities, empower consumers, and educate health care providers about the needs of people with disabilities. Several of these needs are consistent with the needs identified by consumers in the focus groups. Consumers indicated that improvements to the overall content and design of the state-developed health communication materials are needed, yet health care and human service providers who participated in the Web-based survey were generally satisfied with the materials. Nearly all providers reported being aware of the materials; however, consumers were not familiar with the state-developed materials reviewed by the focus groups.Conclusions: Improvements in the content and dissemination of health promotion materials designed by states are indicated. Implications for public health practice, including recommendations for improving future health communication materials, are addressed in this article.

Physical activity, disability, and mood in the early stage of multiple sclerosis - Corrected Proof

Yoojin Suh, Robert W. Motl, David C. Mohr — 2009-11-02

Abstract: Background: Early multiple sclerosis (MS) may constitute a period of particular vulnerability to psychological distress such as anxiety and depression. Physical activity is a potentially modifiable, behavioral correlate of anxiety and depression in the early stages of MS.Objective: The present study provides an initial examination of the associations between physical activity and anxiety and depression in early MS. We hypothesized that physical activity might be a correlate of anxiety and depression in early MS and that this association might be indirect and accounted for by disability.Methods: The sample included 96 individuals with a mean duration of MS of 3.0 years (SD =1.5, range=0.5-5 years). The participants wore an accelerometer for 7 days as an objective measure of physical activity and then completed the Patient Determined Disease Steps (PDDS) scale and Hospital Anxiety and Depression Scale (HADS).Results: Descriptive analysis indicated that 41% and 43% of the sample had elevated levels of anxiety and depression, respectively, based on HADS scores (i.e., score ≥8). Correlation analysis indicated that physical activity was significantly associated with depression (r=−0.25; ρ=−.23), but not anxiety (r=−0.05; ρ=−.02). Path analysis indicated that the association between physical activity and depression was entirely indirect by way of disability (path coefficient=−0.23).Conclusions: Such results suggest that physical activity could be an important health promoting behavior for reducing depression in the early stages of MS and this should be the focus of subsequent randomized controlled clinical trials.