<?xml version="1.0" encoding="UTF-8"?><xml><records><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Chung, Hyewon</style></author><author><style face="normal" font="default" size="100%">Salem, Rana</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures.</style></title><secondary-title><style face="normal" font="default" size="100%">Disabil Health J</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2018</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2018 Jan</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">11</style></volume><pages><style face="normal" font="default" size="100%">99-107</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;&lt;b&gt;BACKGROUND: &lt;/b&gt;Individuals with multiple sclerosis (MS) report fatigue, pain, depression, cognitive difficulties, and other symptoms. It is often difficult to compare symptoms across studies and populations because scales used to measure individual symptoms or quality of life indicators (QOLI) use different metrics and often do not provide norms. PROMIS and Neuro-QOL measures, developed with modern psychometric methods, use a common metric and provide population norms.&lt;/p&gt;
&lt;p&gt;&lt;b&gt;OBJECTIVE: &lt;/b&gt;To create symptom profiles and compare symptoms and QOLIs of people living with MS to a US general population sample.&lt;/p&gt;
&lt;p&gt;&lt;b&gt;METHODS: &lt;/b&gt;Data from observational cross-sectional survey studies of 1544 community dwelling individuals with MS were analyzed. T-tests and non-parametric tests were used to examine whether symptoms or QOLIs of people with MS differed from the general US population. Regression analyses were used to adjust differences for age and sex. Measures included PROMIS or NeuroQoL anxiety, depression, fatigue, sleep disturbance and related impairment, pain interference, physical function, satisfaction with social roles, and applied cognition. Symptom levels were also compared by age, gender, and disability level.&lt;/p&gt;
&lt;p&gt;&lt;b&gt;RESULTS: &lt;/b&gt;Scores on all health domains were statistically significantly (all p&amp;nbsp;&amp;lt;&amp;nbsp;0.001) worse than the general US population and six domains had scores worse by half standard deviation or more. These differences remained significant after adjusting for age and sex.&lt;/p&gt;
&lt;p&gt;&lt;b&gt;CONCLUSIONS: &lt;/b&gt;Individuals with MS report clinically meaningful worse health compared to the general population across multiple health related domains. Symptom profiles utilizing PROMIS or NeuroQoL measures can be used to quickly assess symptom levels in an individual or group.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">1</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Silverman, Arielle M</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author><author><style face="normal" font="default" size="100%">Smith, Amanda E</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Cohen, Geoffrey L</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Solace in Solidarity: Disability Friendship Networks Buffer Well-Being.</style></title><secondary-title><style face="normal" font="default" size="100%">Rehabil Psychol</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2017</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2017 Apr 10</style></date></pub-dates></dates><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;&lt;b&gt;PURPOSE/OBJECTIVE: &lt;/b&gt;To determine whether having friends who share one&amp;#39;s disability experiences is associated with higher well-being, and whether these friendships buffer well-being from disability-related stressors. Research Method/Design: In 2 cross-sectional studies, adults with long-term physical disabilities identified close friends who shared their diagnosis. We assessed well-being as a function of the number of friends that participants identified in each group. Study 1 included 71 adults with legal blindness living in the United States, while Study 2 included 1,453 adults in the United States with either muscular dystrophy (MD), multiple sclerosis (MS), post-polio syndrome (PPS), or spinal cord injury (SCI).&lt;/p&gt;
&lt;p&gt;&lt;b&gt;RESULTS: &lt;/b&gt;In Study 1, having more friends sharing a blindness diagnosis was associated with higher life satisfaction, even controlling for the number of friends who were not blind. In Study 2, Participants with more friends sharing their diagnosis reported higher quality of life and satisfaction with social role participation. Participants with more friends sharing their diagnosis also showed and attenuated associations between the severity of their functional impairment and their quality of life and social role satisfaction, suggesting that their friendships buffered the impact of their functional impairment on well-being. Participants reporting more friends with any physical disability showed similar benefits.&lt;/p&gt;
&lt;p&gt;&lt;b&gt;CONCLUSIONS/IMPLICATIONS: &lt;/b&gt;Friends with disabilities can offer uniquely important informational and emotional support resources that buffer the impact of a functional impairment on well-being. Psychosocial interventions should help people with long-term disabilities build their peer support networks. (PsycINFO Database Record&lt;/p&gt;
</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Crabb, C.</style></author><author><style face="normal" font="default" size="100%">Bowers, A</style></author><author><style face="normal" font="default" size="100%">Owen, R.</style></author><author><style face="normal" font="default" size="100%">Heller, Tamar</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Appraisal of Personal Support Workers by Medicaid Managed Care Enrollees Aging with Disabilities</style></title><secondary-title><style face="normal" font="default" size="100%">American Public Health Association Annual Meeting and Expo</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2016</style></year></dates><language><style face="normal" font="default" size="100%">eng</style></language></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Bowers, A</style></author><author><style face="normal" font="default" size="100%">Crabb, C.</style></author><author><style face="normal" font="default" size="100%">Owen, R.</style></author><author><style face="normal" font="default" size="100%">Heller, Tamar</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Experiences of Medicaid Enrollees with Disabilities in the Transition to Managed Care: Qualitative Analysis of Consumer Survey Responses</style></title><secondary-title><style face="normal" font="default" size="100%">American Public Health Association Annual Meeting and Expo</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2016</style></year></dates><language><style face="normal" font="default" size="100%">eng</style></language></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Heller, Tamar</style></author><author><style face="normal" font="default" size="100%">Owen, Randall</style></author><author><style face="normal" font="default" size="100%">Crabb, C.</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">The impact of family input and involvement on health and long-term services and supports appraisals and unmet needs of older adults and adults with disabilities enrolled in Medicaid managed care</style></title><secondary-title><style face="normal" font="default" size="100%">Annual Meeting of the Gerontological Society of North America</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2016</style></year></dates><language><style face="normal" font="default" size="100%">eng</style></language></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Chung, Hyewon</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Park, Ryoungsun</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Bocell, Fraser D</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Testing the measurement invariance of the University of Washington Self-Efficacy Scale short form across four diagnostic subgroups.</style></title><secondary-title><style face="normal" font="default" size="100%">Qual Life Res</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2016</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2016 Apr 26</style></date></pub-dates></dates><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;PURPOSE: The University of Washington Self-Efficacy Scale (UW-SES) was originally developed for people with multiple sclerosis (MS) and spinal cord injury (SCI). This study evaluates the measurement invariance of the 6-item short form of the UW-SES across four disability subgroups. Evidence of measurement invariance would extend the UW-SES for use in two additional diagnostic groups: muscular dystrophy (MD) and post-polio syndrome (PPS). METHODS: Multi-group confirmatory factor analysis was used to evaluate successive levels of measurement invariance of the 6-item short form, the UW-SES: (a) configural invariance, i.e., equivalent item-factor structures between groups; (b) metric invariance, i.e., equivalent unstandardized factor loadings between groups; and (c) scalar invariance, i.e., equivalent item intercepts between groups. Responses from the four groups with different diagnostic disorders were compared: MD (n&amp;nbsp;=&amp;nbsp;172), MS (n&amp;nbsp;=&amp;nbsp;868), PPS (n&amp;nbsp;=&amp;nbsp;225), and SCI (n&amp;nbsp;=&amp;nbsp;242). RESULTS: The results of this study support that the most rigorous form of invariance (i.e., scalar) holds for the 6-item short form of the UW-SES across the four diagnostic subgroups. CONCLUSIONS: The current study suggests that the 6-item short form of the UW-SES has the same meaning across the four diagnostic subgroups. Thus, the 6-item short form is validated for people with MD, MS, PPS, and SCI.&lt;/p&gt;
</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Askew, Robert L</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Chung, Hyewon</style></author><author><style face="normal" font="default" size="100%">Ehde, Dawn M</style></author><author><style face="normal" font="default" size="100%">Bombardier, Charles H</style></author><author><style face="normal" font="default" size="100%">Kraft, George H</style></author><author><style face="normal" font="default" size="100%">Jones, Salene M</style></author><author><style face="normal" font="default" size="100%">Johnson, Kurt L</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Pain affects depression through anxiety, fatigue, and sleep in multiple sclerosis.</style></title><secondary-title><style face="normal" font="default" size="100%">Rehabil Psychol</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Anxiety Disorders</style></keyword><keyword><style  face="normal" font="default" size="100%">Chronic Pain</style></keyword><keyword><style  face="normal" font="default" size="100%">Cross-Sectional Studies</style></keyword><keyword><style  face="normal" font="default" size="100%">Depressive Disorder</style></keyword><keyword><style  face="normal" font="default" size="100%">Fatigue</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Multiple Sclerosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Quality of Life</style></keyword><keyword><style  face="normal" font="default" size="100%">Sleep Wake Disorders</style></keyword><keyword><style  face="normal" font="default" size="100%">Surveys and Questionnaires</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2015</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2015 Feb</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">60</style></volume><pages><style face="normal" font="default" size="100%">81-90</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;OBJECTIVE: Over a quarter million individuals in the United States have multiple sclerosis (MS). Chronic pain and depression are disproportionately high in this population. The purpose of this study was to examine the relationship between chronic pain and depression in MS and to examine potentially meditational effects of anxiety, fatigue, and sleep. METHOD: We used cross-sectional data from self-reported instruments measuring multiple symptoms and quality of life indicators in this study. We used structural equation modeling to model direct and indirect effects of pain on depression in a sample of 1,245 community-dwelling individuals with MS. Pain interference, depression, fatigue, and sleep disturbance were modeled as latent variables with 2 to 3 indicators each. The model controlled for age, sex, disability status (Expanded Disability Status Scale), and social support. RESULTS: A model with indirect effects of pain on depression had adequate fit and accounted for nearly 80% of the variance in depression. The effects of chronic pain on depression were almost completely mediated by fatigue, anxiety, and sleep disturbance. Higher pain was associated with greater fatigue, anxiety, and sleep disturbance, which in turn were associated with higher levels of depression. The largest mediating effect was through fatigue. Additional analyses excluded items with common content and suggested that the meditational effects observed were not attributable to content overlap across scales. CONCLUSION: Individuals living with MS who report high levels of chronic pain and depressive symptoms may benefit from treatment approaches that can address sleep, fatigue, and anxiety.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">1</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Kratz, Anna L</style></author><author><style face="normal" font="default" size="100%">Chadd, Edmund</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Kehn, Matthew</style></author><author><style face="normal" font="default" size="100%">Kroll, Thilo</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">An examination of the psychometric properties of the community integration questionnaire (CIQ) in spinal cord injury.</style></title><secondary-title><style face="normal" font="default" size="100%">J Spinal Cord Med</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2014</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2014 Jan 3</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">Epub Ahead of Print</style></volume><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Objective To examine the psychometric properties of the Community Integration Questionnaire (CIQ) in large samples of individuals with spinal cord injury (SCI). Design Longitudinal 12-month survey study. Setting Nation-wide, community dwelling. Participants Adults with SCI: 627 at Time 1, 494 at Time 2. Interventions Not applicable. Outcome measures The CIQ is a 15-item measure developed to measure three domains of community integration in individuals with traumatic brain injury: home integration, social integration, and productive activity. SCI consumer input suggested the need for two additional items assessing socializing at home and internet/email activity. Results Exploratory factor analyses at Time 1 indicated three factors. Time 2 confirmatory factor analysis did not show a good fit of the 3-factor model. CIQ scores were normally distributed and only the Productive subscale demonstrated problems with high (25%) ceiling effects. Internal reliability was acceptable for the Total and Home scales, but low for the Social and Productive activity scales. Validity of the CIQ is suggested by significant differences by sex, age, and wheelchair use. Conclusions The factor structure of the CIQ was not stable over time. The CIQ may be most useful for assessing home integration, as this is the subscale with the most scale stability and internal reliability. The CIQ may be improved for use in SCI by including items that reflect higher levels of productive functioning, integration across the life span, and home- and internet-based social functioning.&lt;/p&gt;
</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Chen, Ke-Yu</style></author><author><style face="normal" font="default" size="100%">Harniss, Mark</style></author><author><style face="normal" font="default" size="100%">Patel, Shwetak</style></author><author><style face="normal" font="default" size="100%">Johnson, Kurt</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Implementing technology-based embedded assessment in the home and community life of individuals aging with disabilities: a participatory research and development study.</style></title><secondary-title><style face="normal" font="default" size="100%">Disabil Rehabil Assist Technol</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2014</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2014 Mar</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">9</style></volume><pages><style face="normal" font="default" size="100%">112-20</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;PURPOSE: The goal of the study was to investigate the accuracy, feasibility and acceptability of implementing an embedded assessment system in the homes of individuals aging with disabilities. METHOD: We developed and studied a location tracking system, UbiTrack, which can be used for both indoor and outdoor location sensing. The system was deployed in the homes of five participants with spinal cord injuries, muscular dystrophy, multiple sclerosis and late effects of polio. We collected sensor data throughout the deployment, conducted pre and post interviews and collected weekly diaries to measure ground truth. RESULTS: The system was deployed successfully although there were challenges related to system installation and calibration. System accuracy ranged from 62% to 87% depending upon room configuration and number of wireless access points installed. In general, participants reported that the system was easy to use, did not require significant effort on their part and did not interfere with their daily lives. CONCLUSIONS: Embedded assessment has great potential as a mechanism to gather ongoing information about the health of individuals aging with disabilities; however, there are significant challenges to its implementation in real-world settings with people with disabilities that will need to be resolved before it can be practically implemented. IMPLICATIONS FOR REHABILITATION: Technology-based embedded assessment has the potential to promote health for adults with disabilities and allow for aging in place. It may also reduce the difficulty, cost and intrusiveness of health measurement. Many new commercial and non-commercial products are available to support embedded assessment; however, most products have not been well-tested in real-world environments with individuals aging with disability. Community settings and diverse population of people with disabilities pose significant challenges to the implementation of embedded assessment systems.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">2</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Molton, Ivan</style></author><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Smith, Amanda E</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Chen, Wen-Hung</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Prevalence and impact of pain in adults aging with a physical disability: comparison to a US general population sample.</style></title><secondary-title><style face="normal" font="default" size="100%">Clin J Pain</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2014</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2014 Apr</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">30</style></volume><pages><style face="normal" font="default" size="100%">307-15</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;OBJECTIVES: To describe rates of pain and pain interference in a large sample of adults aging with long-standing physical disabilities, relative to a normative US population sample. METHODS: Self-report survey data was collected for a sample of 1877 individuals with spinal cord injury, neuromuscular disease, postpolio syndrome, or multiple sclerosis. Rates of pain severity and pain interference in these samples were then compared with those taken from a large normative sample (&amp;gt;20,000) collected through the NIH Patient Reported Outcomes Measurement Information System (PROMIS). RESULTS: Individuals with long-standing physical disabilities reported higher levels of pain and pain interference across the lifespan as compared with individuals in the normative sample. In general, individuals with disability did not experience an age-related decrease in pain and pain impact in contrast to those in the normative sample. For 3 disability groups (neuromuscular disease, postpolio syndrome, and multiple sclerosis), pain interference remained elevated and significantly higher than national norms in the &amp;quot;postretirement&amp;quot; period (ie, age 65 to 74). DISCUSSION: Results from this study provide a large scale data on prevalence rates of pain and pain interference in this population. Findings underscore the prevalence and impact of pain in persons with disabilities and suggest that individuals with disability may not experience the same degree of decrease in pain interference in later life that is typical of the US population. Those aging with disability may be especially at risk for pain-related impairment in later life.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">4</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Smith, Amanda E</style></author><author><style face="normal" font="default" size="100%">McMullen, Kara</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Carter, Gregory T</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Symptom burden in persons with myotonic and facioscapulohumeral muscular dystrophy.</style></title><secondary-title><style face="normal" font="default" size="100%">Am J Phys Med Rehabil</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Activities of Daily Living</style></keyword><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Age Distribution</style></keyword><keyword><style  face="normal" font="default" size="100%">Aged, 80 and over</style></keyword><keyword><style  face="normal" font="default" size="100%">Cross-Sectional Studies</style></keyword><keyword><style  face="normal" font="default" size="100%">Fatigue</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Incidence</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Memory Disorders</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Muscular Dystrophy, Facioscapulohumeral</style></keyword><keyword><style  face="normal" font="default" size="100%">Myotonic Dystrophy</style></keyword><keyword><style  face="normal" font="default" size="100%">Pain</style></keyword><keyword><style  face="normal" font="default" size="100%">Prognosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Questionnaires</style></keyword><keyword><style  face="normal" font="default" size="100%">Regression Analysis</style></keyword><keyword><style  face="normal" font="default" size="100%">Risk Assessment</style></keyword><keyword><style  face="normal" font="default" size="100%">Severity of Illness Index</style></keyword><keyword><style  face="normal" font="default" size="100%">Sex Distribution</style></keyword><keyword><style  face="normal" font="default" size="100%">Sickness Impact Profile</style></keyword><keyword><style  face="normal" font="default" size="100%">Vision Disorders</style></keyword><keyword><style  face="normal" font="default" size="100%">Young Adult</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2014</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2014 May</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">93</style></volume><pages><style face="normal" font="default" size="100%">387-95</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;OBJECTIVE: This study examines the prevalence of pain, fatigue, imbalance, memory impairment, and vision loss in persons with myotonic and facioscapulohumeral dystrophy and their association with functioning. DESIGN: A survey (N = 170) included measures of severity (0-10 scales) and course of these symptoms as well as measures of social integration, home competency, mental health, and productive activity. Descriptive and regression analyses examined the associations between symptoms and functioning. RESULTS: Fatigue (91%), imbalance (82%), and pain (77%) were the most commonly reported. The most severe symptom was fatigue (mean &amp;plusmn; SD severity, 5.14 &amp;plusmn; 2.81), followed by imbalance (4.95 &amp;plusmn; 3.25). Symptoms were most likely to stay the same or worsen since onset. Controlling for potential medical and demographic confounds, symptoms were associated with 17% of the mental health variance, 10% of home competency, 10% of social integration, 16% of productive activity for myotonic dystrophy type 1, and 12% of productive activity for facioscapulohumeral muscular dystrophy. CONCLUSIONS: Pain, fatigue, and imbalance are common in persons with muscular dystrophy. Interventions may be useful to mitigate their impact on functioning. Further research should examine these relationships to guide clinical practices.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">5</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Baylor, Carolyn</style></author><author><style face="normal" font="default" size="100%">Yorkston, Kathryn</style></author><author><style face="normal" font="default" size="100%">Eadie, Tanya</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Chung, Hyewon</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">The Communicative Participation Item Bank (CPIB): item bank calibration and development of a disorder-generic short form.</style></title><secondary-title><style face="normal" font="default" size="100%">J Speech Lang Hear Res</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Aged, 80 and over</style></keyword><keyword><style  face="normal" font="default" size="100%">Amyotrophic Lateral Sclerosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Calibration</style></keyword><keyword><style  face="normal" font="default" size="100%">Communication</style></keyword><keyword><style  face="normal" font="default" size="100%">Disability Evaluation</style></keyword><keyword><style  face="normal" font="default" size="100%">Dysarthria</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Head and Neck Neoplasms</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Multiple Sclerosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Parkinson Disease</style></keyword><keyword><style  face="normal" font="default" size="100%">Questionnaires</style></keyword><keyword><style  face="normal" font="default" size="100%">Reproducibility of Results</style></keyword><keyword><style  face="normal" font="default" size="100%">Self Report</style></keyword><keyword><style  face="normal" font="default" size="100%">Social Behavior</style></keyword><keyword><style  face="normal" font="default" size="100%">Voice Disorders</style></keyword><keyword><style  face="normal" font="default" size="100%">Young Adult</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2013</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2013 Aug</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">56</style></volume><pages><style face="normal" font="default" size="100%">1190-208</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;PURPOSE: The purpose of this study was to calibrate the items for the Communicative Participation Item Bank (CPIB; Baylor, Yorkston, Eadie, Miller, &amp;amp; Amtmann, 2009; Yorkston et al., 2008) using item response theory (IRT). One overriding objective was to examine whether the IRT item parameters would be consistent across different diagnostic groups, thereby allowing creation of a disorder-generic instrument. The intended outcomes were the final item bank and a short form ready for clinical and research applications. METHOD: Self-report data were collected from 701 individuals representing 4 diagnoses: multiple sclerosis, Parkinson&amp;#39;s disease, amyotrophic lateral sclerosis, and head and neck cancer. Participants completed the CPIB and additional self-report questionnaires. CPIB data were analyzed using the IRT graded response model. RESULTS: The initial set of 94 candidate CPIB items were reduced to an item bank of 46 items demonstrating unidimensionality, local independence, good item fit, and good measurement precision. Differential item functioning analyses detected no meaningful differences across diagnostic groups. A 10-item, disorder-generic short form was generated. CONCLUSIONS: The CPIB provides speech-language pathologists with a unidimensional, self-report outcomes measurement instrument dedicated to the construct of communicative participation. This instrument may be useful to clinicians and researchers wanting to implement measures of communicative participation in their work.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">4</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Askew, Robert L</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Chung, Hyewon</style></author><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Johnson, Kurt L</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Development of a Crosswalk for Pain Interference Measured by the BPI and PROMIS Pain Interference Short Form</style></title><secondary-title><style face="normal" font="default" size="100%">Quality of life research</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2013</style></year><pub-dates><date><style  face="normal" font="default" size="100%">12/2013</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">22</style></volume><pages><style face="normal" font="default" size="100%">2769-76</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;&lt;span&gt;Introduction:&amp;nbsp; To help researchers in Multiple Sclerosis (MS) take advantage of the measurement properties of the &lt;/span&gt;PROMIS&lt;span&gt; Pain Interference instrument while maintaining continuity with previous research, we developed and tested a crosswalk table to transform Brief Pain Inventory Pain Interference scale (BPI) scores to &lt;/span&gt;PROMIS-PI&lt;span&gt; short form (&lt;/span&gt;PROMIS-PI&lt;span&gt; SF) scores.&lt;/span&gt;&lt;/p&gt;
&lt;p&gt;Methods: The BPI and the PROMIS-PI SF were administered in two studies that included persons with MS. One sample of 369 participants served as a developmental calibration sample, and separate sample of 360 served as a validation sample. The crosswalk development included dimensionality assessment, item-level parameter estimation, and assessment of accuracy. BPI and PROMIS-PI T-scores were obtained from participants&amp;rsquo; item responses, and using the crosswalk table, PROMIS-PI T-scores were derived from responses to the BPI items. Differences between observed and crosswalked T-scores were compared in both samples.&lt;/p&gt;
&lt;p&gt;Results: For BPI summary scores ranging from 0 to 10, corresponding T-scores ranged from 38.6 to 81.2. &amp;nbsp;The mean difference between observed and crosswalked T-scores was 0.51 (sd=3.9) in the calibration sample and -1.47 (sd=4.2) in the validation sample. Approximately 80% of crosswalked scores in the calibration sample were within 4 score points of the observed PROMIS-PI SF scores, and 70% were within 4 points in the validation sample. In both samples, the largest differences were at lower levels of the pain interference continuum.&lt;/p&gt;
&lt;p&gt;Conclusions: Crosswalked pain interference scores adequately approximated observed PROMIS-PI SF scores in both the calibration and validation samples. Researchers and clinicians interested in adopting the PROMIS instruments can use this table to transform BPI scores to enable comparisons with other studies and to maintain continuity with previous research.&amp;nbsp;&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">10</style></issue><section><style face="normal" font="default" size="100%">2769</style></section></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Victorson, David</style></author><author><style face="normal" font="default" size="100%">Manly, Jennifer</style></author><author><style face="normal" font="default" size="100%">Wallner-Allen, Kathleen</style></author><author><style face="normal" font="default" size="100%">Fox, Nathan</style></author><author><style face="normal" font="default" size="100%">Purnell, Christy</style></author><author><style face="normal" font="default" size="100%">Hendrie, Hugh</style></author><author><style face="normal" font="default" size="100%">Havlik, Richard</style></author><author><style face="normal" font="default" size="100%">Harniss, Mark</style></author><author><style face="normal" font="default" size="100%">Magasi, Susan</style></author><author><style face="normal" font="default" size="100%">Correia, Helena</style></author><author><style face="normal" font="default" size="100%">Gershon, Richard</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Using the NIH Toolbox in special populations: considerations for assessment of pediatric, geriatric, culturally diverse, non-English-speaking, and disabled individuals.</style></title><secondary-title><style face="normal" font="default" size="100%">Neurology</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Cultural Diversity</style></keyword><keyword><style  face="normal" font="default" size="100%">Culture</style></keyword><keyword><style  face="normal" font="default" size="100%">Disabled Persons</style></keyword><keyword><style  face="normal" font="default" size="100%">Geriatrics</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Language</style></keyword><keyword><style  face="normal" font="default" size="100%">National Institutes of Health (U.S.)</style></keyword><keyword><style  face="normal" font="default" size="100%">Pediatrics</style></keyword><keyword><style  face="normal" font="default" size="100%">United States</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2013</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2013 Mar 12</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">80</style></volume><pages><style face="normal" font="default" size="100%">S13-9</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;BACKGROUND: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and people of different ethnic and cultural backgrounds, within that population. METHODS: The NIH Toolbox project convened several working groups to address assessment issues for the following subgroups: pediatric, geriatric, cultural, non-English-speaking, and disabled. Each group reviewed all NIH Toolbox instruments in their entirety. RESULTS: Each working group provided recommendations to the scientific study teams regarding instrument content, presentation, and administration. When feasible and appropriate, instruments and administration procedures have been modified in accordance with these recommendations. CONCLUSION: Health outcome measurement can benefit from expert input regarding assessment considerations for special subgroups.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">11 Suppl 3</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Johnson, Kurt L</style></author><author><style face="normal" font="default" size="100%">Callahan, Leigh</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Keefe, Francis J</style></author><author><style face="normal" font="default" size="100%">Revicki, Dennis</style></author><author><style face="normal" font="default" size="100%">Roddey, Toni S</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Comparison of pain behaviors in multiple sclerosis, back pain, and arthritis.</style></title><secondary-title><style face="normal" font="default" size="100%">Quality of life research</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Quality of Life</style></keyword><keyword><style  face="normal" font="default" size="100%">Research</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2012</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/22298117</style></url></web-urls></urls><volume><style face="normal" font="default" size="100%">20</style></volume><pages><style face="normal" font="default" size="100%">6</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Aims: To compare pain behaviors in three samples: multiple sclerosis (MS), back pain, and arthritis using pain behavior frequency counts (video-taped), and self- and signiﬁcant other (SO)-responses to candidate items for a new pain behavior measure. Methods: A sample of patient/SO pairs (N=620 pairs) completed measures of pain, function, disability, and other pain correlates. In addition, a sample of 30 individuals with back pain, 26 with arthritis, and 30 with MS were videotaped for 10 minutes while sitting, standing, walking, and lying down. Videotapes were coded to obtain pain behavior frequency counts by category (guarding, sighing, bracing, rubbing, and grimacing) and total behavior counts. Results: Mean item responses (1 to 5 response scale) in MS, arthritis, and back pain were, respectively, 2.7 (SD=0.56), 2.7 (SD=0.71), and 3.0 (SD=0.69) Spearman correlation coefﬁcients between patient and SO pain responses were 0.55 (MS), 0.60 (arthritis), and 0.67 (back pain). Mean item score differences between self and SO item scores (1-5 response scale) were highest for persons with arthritis (0.08 higher) and lowest for persons with MS (0.02 higher). Self-reported pain behaviors and pain behavior frequency counts (videotapes) were moderately correlated and varied by item. Items with highest correlations were items about using a cane or other support (0.62), asking for help when walking (0.53), and the item, &amp;ldquo;You could hear it in my voice&amp;rdquo; (0.50). Classes of behaviors most correlated with self-report pain behaviors varied by diagnosis. In the back pain sample, guarding behavior counts had the strongest correlation with self-report (0.50). In the arthritis sample, the highest correlations were between self-reported pain behaviors and guarding (0.47) and total behavior counts (0.53). In the sample with MS, the highest values were for counts of rubbing (0.49) and total behavior counts (0.64). Conclusions: Pain behaviors vary somewhat by diagnosis but there also are substantial similarities. Signiﬁcant others reported higher levels of pain behaviors than were self-reported, but mean differences were less than 1 response category on a 1-5 response scale. The correlations among self-report, SO-report, and frequency counts based on videotaped observations support the validity of candidate items for a new pain behavior measure.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">Suppl 1</style></issue><accession-num><style face="normal" font="default" size="100%">22298117</style></accession-num></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Noonan, Vanessa</style></author><author><style face="normal" font="default" size="100%">Lang, Nina</style></author><author><style face="normal" font="default" size="100%">Kim, Jiseon</style></author><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Comparison of the psychometric properties of two fatigue scales in multiple sclerosis.</style></title><secondary-title><style face="normal" font="default" size="100%">Rehabilitation Psychology</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Rehabil Psychol</style></alt-title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2012 May</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">57</style></volume><pages><style face="normal" font="default" size="100%">159-66</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Objective: To compare psychometric functioning of the Fatigue Severity Scale (FSS; Krupp, LaRocca, Muir-Nash, &amp;amp; Steinberg, 1989) and the Modified Fatigue Impact Scale (MFIS; MSCCPG, 1998) in a community sample of persons with multiple sclerosis (MS). Method: A self-report survey including the FSS, MFIS, demographic, and other health measures was completed by 1271 individuals with MS. Analyses evaluated the reliability and validity of the scales, assessed their dimensional structures, and estimated levels of floor and ceiling effects. Item response theory (IRT) was used to evaluate the precision of the MFIS and FSS at different levels of fatigue. Results: Participants had a mean score on the FSS of 5.1 and of 44.2 on the MFIS. Cronbach&amp;#39;s alpha values for FSS and MFIS were all 0.93 or greater. Known-groups and discriminant validity of MFIS and FSS scores were supported by the analyses. The MFIS had low floor and ceiling effects, and the FSS had low floor and moderate ceiling effects. Unidimensionality was supported for both scales. IRT analyses indicate that the FSS is less precise in measuring both low and high levels of fatigue, compared with the MFIS. Conclusions: Researchers and clinicians interested in measuring physical aspects of fatigue in samples whose fatigue ranges from mild to moderate can choose either instrument. For those interested in measuring both physical and cognitive aspects of fatigue, and whose sample is expected to have higher levels of fatigue, the MFIS is a better choice even though it is longer. IRT analyses suggest that both scales could be shortened without a significant loss of precision. (PsycINFO Database Record (c) 2012 APA, all rights reserved).&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">2</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/22686554?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Chen, Wen-Hung</style></author><author><style face="normal" font="default" size="100%">Revicki, Dennis</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Keefe, Francis J</style></author><author><style face="normal" font="default" size="100%">Cella, David</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Development and Analysis of PROMIS Pain Intensity Scale.</style></title><secondary-title><style face="normal" font="default" size="100%">Quality of life research</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">http://www.springerlink.com/content/5h88546t283p1347/fulltext.pdf</style></url></web-urls></urls><volume><style face="normal" font="default" size="100%">20</style></volume><pages><style face="normal" font="default" size="100%">18</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Aims: The primary objective of this study is to develop a PROMIS Pain Intensity Scale by evaluating the unidimensionality and completing item calibration of the pain intensity items developed in the PROMIS Wave I study. This document provides a summary of the item selection process based on the results of the conﬁrmatory factor analysis (CFA) and item response theory (IRT) analysis. Methods: The PROMIS project is focused on developing item banks and assessment instruments for pain and other patient-reported outcome domains. The draft PROMIS pain related items were developed based on literature reviews, clinician interviews, and qualitative research with patients with pain. In addition to the three item banks related to pain (pain interference, pain quality, and pain behavior), six items were identiﬁed as pain intensity items. The data used in this study included: 1) PROMIS Wave I sample where internet survey data were collected from 838 participants who responded to all six pain intensity items and 5,059 participants who responded to at least one pain intensity item; 2) American Chronic Pain Association (ACPA) sample where 967 participants completed subset of the pain intensity items; and 3) Northwestern University sample where 532 participants completed another subset of the pain intensity items. Participants reporting no pain were excluded from the analysis. We evaluated inter-item correlations, conﬁrmatory factor analysis (CFA), item response theory analysis, and correlations with other PROMIS global items of these six pain intensity items. Results: Inter-item correlation ranges from 0.33 to 0.93. CFA shows good ﬁt of the six items to a unidimensional model: comparative ﬁx index (CFI)=0.989, Tucker-Lewis index (TLI)=0.986, and root mean square error of approximation (RMSEA)=0.093. Based on results of IRT analysis results three items are removed owing to local dependency and model misﬁt. The IRT slope parameters of the three remaining items were 1.84, 3.15, and 4.42. The category threshold parameters ranged from -2.30 to 3.23. Correlation with global pain item is 0.68, and 0.61 with PROMIS global physical health score. Conclusions: The PROMIS pain intensity scale provides a measure of characteristic pain that could be useful in clinical and research settings.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">Suppl 1</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Chen, Keyu</style></author><author><style face="normal" font="default" size="100%">Harniss, Mark</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Embedded assessment in the home and community life of individuals aging with disabilities</style></title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year></dates><publisher><style face="normal" font="default" size="100%">Workshop on Evaluating Off-the-Shelf Technologies for Personal Health Monitoring at the 14th International Conference on Ubiquitous Computing</style></publisher><pub-location><style face="normal" font="default" size="100%">Pittsburgh, PA</style></pub-location><language><style face="normal" font="default" size="100%">eng</style></language></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Campbell, Margaret L</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author><author><style face="normal" font="default" size="100%">Heller, Tamar</style></author><author><style face="normal" font="default" size="100%">Spillman, Brenda</style></author><author><style face="normal" font="default" size="100%">Putnam, Michelle</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">New Investigations of Aging with Disability: Results and Implications for Data, Policy, and Practice</style></title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year></dates><publisher><style face="normal" font="default" size="100%">Gerontological Society of America (GSA)</style></publisher><pub-location><style face="normal" font="default" size="100%">San Diego, CA</style></pub-location><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;This symposium will feature four presentations on aging &lt;em&gt;with&lt;/em&gt; and aging &lt;em&gt;into&lt;/em&gt; disability by distinguished scholars from gerontology and rehabilitation. The purpose of this symposium is to advance knowledge about the health and well-being of individuals aging with long-term disabilities acquired at different stages of the life course, and identify implications for program development and public policy. The symposium will also examine how best practices in health interventions in the fields of gerontology and disability can be used to inform each other to better meet the needs of the expanding population of individuals aging with disabilities, regardless of age of onset. &amp;nbsp;Gaps in data sources and evidence will also be discussed. Implications focus on how these findings inform federal, state, and local level policies and practices as well as international efforts to bridge the fields of aging and disability research.&lt;/p&gt;
&lt;p&gt;The first two presenters focus on documenting secondary/chronic health conditions experienced by individuals aging with long-term disabilities acquired earlier in life, and outlining the results of reviews of best practices for health promotion interventions to synthesize &amp;ldquo;what works&amp;rdquo; for middle-aged and older adults aging with physical and developmental disabilities. The third presenter utilizes data from The National Health and Aging Trends Study (NHATS) to examine implications of disability onset before late life for supportive services. The fourth presenter places these trends within a larger context of initiatives on healthy aging and highlights how they inform national and international work on bridging aging and disability research, policy, and practice.&lt;/p&gt;
</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Reliability and validity of pain, fatigue, depression, and social roles participation PRO measures in populations of individuals aging with a physical disability.</style></title><secondary-title><style face="normal" font="default" size="100%">Quality of life research</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">http://www.springerlink.com/content/5h88546t283p1347/fulltext.pdf</style></url></web-urls></urls><volume><style face="normal" font="default" size="100%">20</style></volume><pages><style face="normal" font="default" size="100%">66</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Aims: To evaluate the reliability and validity of patient reported outcome measures across the domains of pain, depression, fatigue, and social roles participation in four different rehabilitation study populations. Methods: Individuals with muscular dystrophy (MD) (N=340), multiple sclerosis (MS) (N=584), spinal cord injury (SCI) (N=492), and post-polio syndrome (PPS) (N=446) participated in a self-report survey related to aging with a disability. Measures examined included the PHQ-9 depression scale and PROMIS short forms for fatigue, pain interference, depression, and social roles participation. Analyses for each scale and within each population included examinations of ﬂoor and ceiling effects, percentage of variance accounted for by the ﬁrst factor and ratio of ﬁrst and second eigenvalues using exploratory factor analyses (EFA), and calculations of Chronbach&amp;rsquo;s alpha. Results: EFA analyses supported the unidimensionality of scores from all scales in all four populations. Across scales and populations the lowest eigenvalue ratio was 8.2 (PHQ-9) and the highest was 52 (PROMIS pain). The variance accounted for by the ﬁrst factor ranged from 49% (PHQ-9) to 86% (PROMIS pain). The PROMIS pain and depression scales demonstrated ﬂoor effects, especially in individuals with MS and MD. On the pain scale, 20.5% and 23.8% of MD and MS individuals respectively were at the ﬂoor while 10.9% and 15.7% were at the ﬂoor on the depression scale. The PHQ-9 also demonstrated moderate ﬂoor effects with up to 9.5% of individuals at the bottom of the scale. With the exception of the social roles scale none of the scales had more than 2% of individuals at the ceiling of the scale. Ceiling effects on the social roles scale ranged from 1.2% (PPS) to 7.2% (MD). Chronbach&amp;rsquo;s alpha values ranged from 0.80 (fatigue in PPS) to 0.96 (pain in MS). Conclusions: EFA results support the unidimensionality of the response data, and thus the construct validity of the studied measures. Although there were some ﬂoor effects, these appear to be due to lack of symptoms in portions of the sample (e.g., persons reporting no pain), rather than inadequacy of the scale. The results of the study support the use of the measures in MS, MD, PPS, and SCI.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">Suppl 1</style></issue></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author><author><style face="normal" font="default" size="100%">Groah, Suzanne L</style></author><author><style face="normal" font="default" size="100%">Campbell, Margaret L</style></author><author><style face="normal" font="default" size="100%">Charlifue, Susan</style></author><author><style face="normal" font="default" size="100%">Chiodo, A</style></author><author><style face="normal" font="default" size="100%">Forchheimer, Martin</style></author><author><style face="normal" font="default" size="100%">Krause, James S</style></author><author><style face="normal" font="default" size="100%">Tate, Denise</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Secondary health conditions in individuals aging with SCI: terminology, concepts and analytic approaches.</style></title><secondary-title><style face="normal" font="default" size="100%">Spinal Cord</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Spinal Cord</style></alt-title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2012 May</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">50</style></volume><pages><style face="normal" font="default" size="100%">373-8</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;STUDY DESIGN: Literature review. OBJECTIVES: Utilizing individuals with spinal cord injury (SCI) as a representative population for physical disability, this paper: (1) reviews the history of the concept of secondary conditions as it applies to the health of individuals aging with long-term disabilities; (2) proposes a definition of secondary health conditions (SHCs) and a conceptual model for understanding the factors that are related to SHCs as individuals age with a disability; and (3) discusses the implications of the model for the assessment of SHCs and for developing interventions that minimize their frequency, severity and negative effects on the quality of life of individuals aging with SCI and other disabilities. METHODS: Key findings from research articles, reviews and book chapters addressing the concept of SHCs in individuals with SCI and other disabilities were summarized to inform the development of a conceptual approach for measuring SCI-related SHCs. CONCLUSIONS: Terms used to describe health conditions secondary to SCI and other physical disabilities are used inconsistently throughout the literature. This inconsistency represents a barrier to improvement, measurement and for the development of effective interventions to reduce or prevent these health conditions and mitigate their effects on participation and quality of life. A working definition of the term SHCs is proposed for use in research with individuals aging with SCI, with the goal of facilitating stronger evidence and increased knowledge upon which policy and practice can improve the health and well-being of individuals aging with a disability.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">5</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/22143678?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Six patient-reported outcome measurement information system short form measures have negligible age- or diagnosis-related differential item functioning in individuals with disabilities.</style></title><secondary-title><style face="normal" font="default" size="100%">Archives of Physical Medicine and Rehabilitation</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Arch Phys Med Rehabil</style></alt-title></titles><dates><year><style  face="normal" font="default" size="100%">2012</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2012 Jul</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">93</style></volume><pages><style face="normal" font="default" size="100%">1289-91</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;UNLABELLED: Cook KF, Bamer AM, Amtmann D, Molton IR, Jensen MP. Six Patient-Reported Outcome Measurement Information System short form measures have negligible age- or diagnosis-related differential item functioning in individuals with disabilities. OBJECTIVE: To evaluate the measurement invariance of 6 self-report measures selected for an ongoing longitudinal study of individuals with spinal cord injury, muscular dystrophy, postpolio syndrome, and multiple sclerosis. DESIGN: Participants completed and returned by mail surveys that included the targeted self-report measures. Ordinal logistic regressions methods were applied to evaluate items for differential item functioning (DIF) by diagnosis and age range. SETTING: Community. PARTICIPANTS: Participants (N=2479) who had 1 of the 4 target diagnoses. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Six short-form measures from the Patient-Reported Outcome Measurement Information System (PROMIS) were administered to participants to measure fatigue, pain interference, satisfaction with social roles, sleep disturbance, sleep-related impairment, and depression. RESULTS: One item of 1 measure (fatigue) exhibited DIF by diagnosis based on a published standard for meaningful DIF. However, scores corrected for this DIF were highly correlated with uncorrected scores (r&amp;gt;.999). No DIF by age range was found for any of the measures. CONCLUSIONS: Study findings support the use of the selected PROMIS short forms for comparing symptoms and quality of life indicators across different diagnoses and age ranges.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">7</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/22386213?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Groah, Suzanne L</style></author><author><style face="normal" font="default" size="100%">Charlifue, Susan</style></author><author><style face="normal" font="default" size="100%">Tate, Denise</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author><author><style face="normal" font="default" size="100%">Forchheimer, Martin</style></author><author><style face="normal" font="default" size="100%">Krause, James S</style></author><author><style face="normal" font="default" size="100%">Lammertse, Daniel P</style></author><author><style face="normal" font="default" size="100%">Campbell, Margaret L</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Spinal cord injury and aging: challenges and recommendations for future research.</style></title><secondary-title><style face="normal" font="default" size="100%">American Journal of Physical Medicine &amp; Rehabilitation</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Am J Phys Med Rehabil</style></alt-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Aging</style></keyword><keyword><style  face="normal" font="default" size="100%">Biomedical Research</style></keyword><keyword><style  face="normal" font="default" size="100%">Continuity of Patient Care</style></keyword><keyword><style  face="normal" font="default" size="100%">Disabled Persons</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Forecasting</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Injury Severity Score</style></keyword><keyword><style  face="normal" font="default" size="100%">Long-Term Care</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Needs Assessment</style></keyword><keyword><style  face="normal" font="default" size="100%">Paraplegia</style></keyword><keyword><style  face="normal" font="default" size="100%">Practice Guidelines as Topic</style></keyword><keyword><style  face="normal" font="default" size="100%">Quadriplegia</style></keyword><keyword><style  face="normal" font="default" size="100%">Spinal Cord Injuries</style></keyword><keyword><style  face="normal" font="default" size="100%">United States</style></keyword><keyword><style  face="normal" font="default" size="100%">Young Adult</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2012</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2012 Jan</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">91</style></volume><pages><style face="normal" font="default" size="100%">80-93</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Population aging, caused by reductions in fertility and increasing longevity, varies by country and is anticipated to continue and to reach global proportions during the 21st century. Although the effects of population aging have been well documented for decades, the impact of aging on people with spinal cord injury (SCI) has not received similar attention. It is reasonable to expect that population aging features such as the increasing mean age of the population, share of the population in the oldest age groups, and life expectancy would be reflected in SCI population demographics. Although the mean age and share of the SCI population older than 65 yrs are increasing, data from the National Spinal Cord Injury Statistical Center suggest that life expectancy increases in the SCI population have not kept the same pace as those without SCI in the last 15 yrs. The reasons for this disparity are likely multifactorial and include the changing demographics of the SCI population with more older people being injured; susceptibility of people with SCI to numerous medical conditions that impart a health hazard; risky behaviors leading to a disproportionate percentage of deaths as a result of preventable causes, including septicemia; changes in the delivery of health services during the first year after injury when the greatest resources are available; and other unknown factors. The purposes of this paper are (1) to define and differentiate general population aging and aging in people with SCI, (2) to briefly present the state of the science on health conditions in those aging with SCI, and finally, (3) to present recommendations for future research in the area of aging with SCI.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">1</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/21681060?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Matsuda, Patricia Noritake</style></author><author><style face="normal" font="default" size="100%">Shumway-Cook, Anne</style></author><author><style face="normal" font="default" size="100%">Ciol, Marcia A</style></author><author><style face="normal" font="default" size="100%">Bombardier, Charles H</style></author><author><style face="normal" font="default" size="100%">Kartin, Deborah A</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Understanding falls in multiple sclerosis: association of mobility status, concerns about falling, and accumulated impairments.</style></title><secondary-title><style face="normal" font="default" size="100%">Physical therapy</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Phys Ther</style></alt-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Accidental Falls</style></keyword><keyword><style  face="normal" font="default" size="100%">Accidents, Home</style></keyword><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Chi-Square Distribution</style></keyword><keyword><style  face="normal" font="default" size="100%">Cross-Sectional Studies</style></keyword><keyword><style  face="normal" font="default" size="100%">Fear</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Mobility Limitation</style></keyword><keyword><style  face="normal" font="default" size="100%">Multiple Sclerosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Questionnaires</style></keyword><keyword><style  face="normal" font="default" size="100%">Risk Factors</style></keyword><keyword><style  face="normal" font="default" size="100%">Self-Help Devices</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2012</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2012 Mar</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">92</style></volume><pages><style face="normal" font="default" size="100%">407-15</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;BACKGROUND: Falls in people with multiple sclerosis (MS) are a serious health concern, and the percentage of people who restrict their activity because of concerns about falling (CAF) is not known. Mobility function and accumulated impairments are associated with fall risk in older adults but not in people with stroke and have not been studied in people with MS. OBJECTIVE: The purposes of this study were: (1) to estimate the percentage of people who have MS and report falling, CAF, and activity restrictions related to CAF; (2) to examine associations of these factors with fall status; and (3) to explore associations of fall status with mobility function and number of accumulated impairments. DESIGN: A cross-sectional survey was conducted. METHODS: A total of 575 community-dwelling people with MS provided information about sociodemographics, falls, CAF, activity restrictions related to CAF, mobility function, and accumulated impairments. Chi-square statistics were used to explore associations among these factors. RESULTS: In all participants, about 62% reported CAF and about 67% reported activity restrictions related to CAF. In participants who did not experience falls, 25.9% reported CAF and 27.7% reported activity restrictions related to CAF. Mobility function was associated with fall status; participants reporting moderate mobility restrictions reported the highest percentage of falls, and participants who were nonwalkers (ie, had severely limited self-mobility) reported the lowest percentage. Falls were associated with accumulated impairments; the participants who reported the highest percentage of 2 or more falls were those with 10 impairments. LIMITATIONS: This cross-sectional study relied on self-reported falls, mobility, and impairment status, which were not objectively verified. CONCLUSIONS: Both CAF and activity restrictions related to CAF were common in people with MS and were reported by people who experienced falls and those who did not. The association of fall status with mobility function did not appear to be linear. Fall risk increased with declining mobility function; however, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">3</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/22135709?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Bombardier, Charles H</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Choi, Seung W</style></author><author><style face="normal" font="default" size="100%">Kroenke, Kurt</style></author><author><style face="normal" font="default" size="100%">Fann, Jesse R</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Do somatic and cognitive symptoms of traumatic brain injury confound depression screening?</style></title><secondary-title><style face="normal" font="default" size="100%">Arch Phys Med Rehabil</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Arch Phys Med Rehabil</style></alt-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Brain Injuries</style></keyword><keyword><style  face="normal" font="default" size="100%">Cognition Disorders</style></keyword><keyword><style  face="normal" font="default" size="100%">Depression</style></keyword><keyword><style  face="normal" font="default" size="100%">Depressive Disorder, Major</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Primary Health Care</style></keyword><keyword><style  face="normal" font="default" size="100%">Retrospective Studies</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2011</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2011 May</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">92</style></volume><pages><style face="normal" font="default" size="100%">818-23</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;OBJECTIVE: To evaluate whether items of the Patient Health Questionnaire 9 (PHQ-9) function differently in persons with traumatic brain injury (TBI) than in persons from a primary care sample. DESIGN: This study was a retrospective analysis of responses to the PHQ-9 collected in 2 previous studies. Responses to the PHQ-9 were modeled using item response theory, and the presence of DIF was evaluated using ordinal logistic regression. SETTING: Eight primary care sites and a single trauma center in Washington state. PARTICIPANTS: Participants (N=3365) were persons from 8 primary care sites (n=3000) and a consecutive sample of persons with complicated mild to severe TBI from a trauma center who were 1 year postinjury (n=365). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: PHQ-9. RESULTS: No PHQ-9 item demonstrated statistically significant or meaningful DIF attributable to TBI. A sensitivity analysis failed to show that the cumulative effects of nonsignificant DIF resulted in a systematic inflation of PHQ-9 total scores. Therefore, the results also do not support the hypothesis that cumulative DIF for PHQ-9 items spuriously inflates the numbers of persons with TBI screened as potentially having major depressive disorder. CONCLUSIONS: The PHQ-9 is a valid screener of major depressive disorder in people with complicated mild to severe TBI, and all symptoms can be counted toward the diagnosis of major depressive disorder without special concern about overdiagnosis or unnecessary treatment.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">5</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/21530731?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Cook, Karon F</style></author><author><style face="normal" font="default" size="100%">Molton, Ivan R</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Fatigue and aging with a disability.</style></title><secondary-title><style face="normal" font="default" size="100%">Archives of Physical Medicine and Rehabilitation</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Arch Phys Med Rehabil</style></alt-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Adolescent</style></keyword><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Age Factors</style></keyword><keyword><style  face="normal" font="default" size="100%">Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Aging</style></keyword><keyword><style  face="normal" font="default" size="100%">Fatigue</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Health Surveys</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Multiple Sclerosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Muscular Dystrophies</style></keyword><keyword><style  face="normal" font="default" size="100%">Postpoliomyelitis Syndrome</style></keyword><keyword><style  face="normal" font="default" size="100%">Self Report</style></keyword><keyword><style  face="normal" font="default" size="100%">Spinal Cord Injuries</style></keyword><keyword><style  face="normal" font="default" size="100%">Washington</style></keyword><keyword><style  face="normal" font="default" size="100%">Young Adult</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2011</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2011 Jul</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">92</style></volume><pages><style face="normal" font="default" size="100%">1126-33</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;OBJECTIVE: To compare self-reported fatigue in 4 disability populations with age-matched, U.S. population norms. We assessed fatigue and age in a sample of individuals with spinal cord injury (SCI), postpolio syndrome (PPS), multiple sclerosis (MS), and muscular dystrophy (MD). DESIGN: This study used survey responses and published age cohort means for fatigue to test the hypothesis that fatigue would be higher in each of 4 clinical samples than the U.S. population norm. We also hypothesized that, for clinical samples, the mean fatigue reported within age cohorts would be higher than the general U.S. population norms for those age ranges derived in the Patient-Reported Outcomes Measurement Information System (PROMIS). SETTING: Survey responses were collected from participants in the Washington state area. PARTICIPANTS: Participants (N=1836) were persons with MD (n=337), MS (n=580), Post-polio (n=441), and SCI (n=478). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: PROMIS Depression Short Form. RESULTS: Individuals with disabilities reported higher levels of fatigue than the normative PROMIS population. In the normative population, self-reported fatigue was substantially lower in age cohorts from middle age to retirement age. However, individuals with disabilities did not demonstrate this age cohort effect. CONCLUSIONS: Individuals with disabilities are not only at greater risk to experience fatigue, but this risk, relative to normative values, increases with age. More research is needed to determine the specific negative impact of fatigue symptoms on functioning in individuals with disabilities as they age.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">7</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/21704793?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Carter, Gregory T</style></author><author><style face="normal" font="default" size="100%">Weiss, Michael D</style></author><author><style face="normal" font="default" size="100%">Chamberlain, Joel R</style></author><author><style face="normal" font="default" size="100%">Han, Jay J</style></author><author><style face="normal" font="default" size="100%">Abresch, Richard T</style></author><author><style face="normal" font="default" size="100%">Miró, Jordi</style></author><author><style face="normal" font="default" size="100%">Jensen, Mark P</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Aging with muscular dystrophy: pathophysiology and clinical management.</style></title><secondary-title><style face="normal" font="default" size="100%">Physical medicine and rehabilitation clinics of North America</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Phys Med Rehabil Clin N Am</style></alt-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Activities of Daily Living</style></keyword><keyword><style  face="normal" font="default" size="100%">Adaptation, Physiological</style></keyword><keyword><style  face="normal" font="default" size="100%">Adolescent</style></keyword><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Aging</style></keyword><keyword><style  face="normal" font="default" size="100%">Child</style></keyword><keyword><style  face="normal" font="default" size="100%">Child, Preschool</style></keyword><keyword><style  face="normal" font="default" size="100%">Combined Modality Therapy</style></keyword><keyword><style  face="normal" font="default" size="100%">Disability Evaluation</style></keyword><keyword><style  face="normal" font="default" size="100%">Disabled Persons</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Middle Aged</style></keyword><keyword><style  face="normal" font="default" size="100%">Muscular Dystrophies</style></keyword><keyword><style  face="normal" font="default" size="100%">Prognosis</style></keyword><keyword><style  face="normal" font="default" size="100%">Quality of Life</style></keyword><keyword><style  face="normal" font="default" size="100%">Risk Assessment</style></keyword><keyword><style  face="normal" font="default" size="100%">Severity of Illness Index</style></keyword><keyword><style  face="normal" font="default" size="100%">Sickness Impact Profile</style></keyword><keyword><style  face="normal" font="default" size="100%">Survival Analysis</style></keyword><keyword><style  face="normal" font="default" size="100%">Treatment Outcome</style></keyword><keyword><style  face="normal" font="default" size="100%">Young Adult</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2010</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2010 May</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">21</style></volume><pages><style face="normal" font="default" size="100%">429-50</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Major advances in the fields of medical science and physiology, molecular genetics, biomedical engineering, and computer science have provided individuals with muscular dystrophy (MD) with more functional equipment, allowing better strategies for improvement of quality of life. These advances have also allowed a significant number of these patients to live much longer. As progress continues to change management, it also changes patients&amp;#39; expectations. A comprehensive medical and rehabilitative approach to management of aging MD patients can often fulfill expectations and help them enjoy an enhanced quality of life.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">2</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/20494287?dopt=Abstract</style></custom1></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author><author><style face="normal" font="default" size="100%">Connell, Frederick A</style></author><author><style face="normal" font="default" size="100%">Dudgeon, Brian J</style></author><author><style face="normal" font="default" size="100%">Johnson, Kurt L</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Frequency of purchase and associated costs of assistive technology for Washington State Medicaid program enrollees with spina bifida by age.</style></title><secondary-title><style face="normal" font="default" size="100%">Disability and Health Journal</style></secondary-title><alt-title><style face="normal" font="default" size="100%">Disabil Health J</style></alt-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Adolescent</style></keyword><keyword><style  face="normal" font="default" size="100%">Adult</style></keyword><keyword><style  face="normal" font="default" size="100%">Age Factors</style></keyword><keyword><style  face="normal" font="default" size="100%">Child</style></keyword><keyword><style  face="normal" font="default" size="100%">Child, Preschool</style></keyword><keyword><style  face="normal" font="default" size="100%">Communication Aids for Disabled</style></keyword><keyword><style  face="normal" font="default" size="100%">Disabled Persons</style></keyword><keyword><style  face="normal" font="default" size="100%">Female</style></keyword><keyword><style  face="normal" font="default" size="100%">Health Care Costs</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">Infant</style></keyword><keyword><style  face="normal" font="default" size="100%">Infant, Newborn</style></keyword><keyword><style  face="normal" font="default" size="100%">Insurance, Health, Reimbursement</style></keyword><keyword><style  face="normal" font="default" size="100%">Male</style></keyword><keyword><style  face="normal" font="default" size="100%">Medicaid</style></keyword><keyword><style  face="normal" font="default" size="100%">Orthotic Devices</style></keyword><keyword><style  face="normal" font="default" size="100%">Spinal Dysraphism</style></keyword><keyword><style  face="normal" font="default" size="100%">United States</style></keyword><keyword><style  face="normal" font="default" size="100%">Washington</style></keyword><keyword><style  face="normal" font="default" size="100%">Wheelchairs</style></keyword><keyword><style  face="normal" font="default" size="100%">Young Adult</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2010</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2010 Jul</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">3</style></volume><pages><style face="normal" font="default" size="100%">155-61</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;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 &amp;quot;good buy&amp;quot; and coverage for AT should be expanded.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">3</style></issue><custom1><style face="normal" font="default" size="100%">http://www.ncbi.nlm.nih.gov/pubmed/21122780?dopt=Abstract</style></custom1></record></records></xml>