<?xml version="1.0" encoding="UTF-8"?><xml><records><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%">Stobbe, G.</style></author></authors><secondary-authors><author><style face="normal" font="default" size="100%">Hertz, D.</style></author></secondary-authors><tertiary-authors><author><style face="normal" font="default" size="100%">Kraft, G.</style></author><author><style face="normal" font="default" size="100%">Alschuler, K.</style></author><author><style face="normal" font="default" size="100%">Wundes, A.</style></author><author><style face="normal" font="default" size="100%">Unruh, K.</style></author><author><style face="normal" font="default" size="100%">Reynolds, P.</style></author><author><style face="normal" font="default" size="100%">Kalb, R.</style></author><author><style face="normal" font="default" size="100%">Beier, M.</style></author><author><style face="normal" font="default" size="100%">Alexander, K.</style></author><author><style face="normal" font="default" size="100%">Scott, J.</style></author><author><style face="normal" font="default" size="100%">Johnson, K.</style></author></tertiary-authors></contributors><titles><title><style face="normal" font="default" size="100%">MS ECHO: Innovative Project to Improve the Capacity of Providers  in Underserved Areas to Treat MS</style></title><secondary-title><style face="normal" font="default" size="100%">Consortium of Multiple Sclerosis Centers</style></secondary-title></titles><dates><year><style  face="normal" font="default" size="100%">2015</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%">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>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Kraft, George H</style></author><author><style face="normal" font="default" size="100%">Amtmann, Dagmar</style></author><author><style face="normal" font="default" size="100%">Johnson, Kurt L</style></author><author><style face="normal" font="default" size="100%">Weir, Virginia G</style></author><author><style face="normal" font="default" size="100%">Verrall, Aimee</style></author><author><style face="normal" font="default" size="100%">Bamer, Alyssa M</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Hidden symptoms of multiple sclerosis increase with patient age</style></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.posters2view.com/ectrims2012/view.php?nu=187</style></url></web-urls></urls><publisher><style face="normal" font="default" size="100%">European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS)</style></publisher><pub-location><style face="normal" font="default" size="100%">Lyon, France</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;Background: Although many of the more obvious symptoms of multiple sclerosis (MS), such as weakness, ataxia, and bladder problems, are incorporated into the Kurtzke Expanded Disability Status Scale (EDSS), less information is available on the prevalence of &amp;quot;hidden&amp;quot; manifestations of this disease, such as fatigue, depression, pain, and anxiety. The recent completion of the NIH-funded PROMIS and Neuro-QoL initiatives allow comparison of less apparent symptoms with age-matched norms from a large, industrialized population.&amp;nbsp; The aim of the current study was to compare less apparent symptoms of MS as well as quality of life (QoL) indicators with population norms and to stratify changes in symptom burden with increasing age.&lt;/p&gt;
&lt;p&gt;Methods: PROMIS short forms, based on US population norms, on 11 hidden symptoms (fatigue, depression, pain interference, anxiety, sleep disturbance, and wake disturbance) and quality of life indicators (cognitive concerns, executive functioning, physical function, global mental function, and social role) were completed by 1,543 individuals with MS in three cross-sectional surveys.&amp;nbsp; Scores for the overall sample were compared on Neuro-QoL cognitive function.&amp;nbsp; Results in 9 domains from age groups 18-34 (n=104), 35-44 (n=195), 45-54 (n=440), 55-64 (n=544), 65-74 (n=223) and older than 75 (n=37) were compared with PROMIS population norms.&lt;/p&gt;
&lt;p&gt;Results: When comparing the whole sample to the US population, adults with MS reported significantly higher symptom burden on all 11 domains, (p&amp;lt;0.0001).&amp;nbsp; Depression showed the least difference and physical function the greatest difference. Comparisons to age group norms showed increasing symptom burden in older cohorts.&amp;nbsp; The 18-34 group reported significantly higher levels of fatigue, pain interference, sleep disturbance, and physical function than the corresponding age norm, (p&amp;lt;0.005).&amp;nbsp; Age groups 35-44 and 45-54 reported significantly higher burden on all domains except global mental function while age groups 55-64 and 65-74 reported higher burden on all 9 domains compared with PROMIS population norms (except age group 65-74 reported significantly less sleep disturbance), (p&amp;lt;0.005).&lt;/p&gt;
&lt;p&gt;Conclusion:&amp;nbsp; Our findings indicate that most of these less-apparent symptoms increase with age. In particular, physical and mental function and satisfaction with social role decrease while fatigue increases most with age.&amp;nbsp; Older adults living with MS may require targeted health care strategies to optimize quality of life.&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%">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>10</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Johnson, K.</style></author></authors><secondary-authors><author><style face="normal" font="default" size="100%">Hertz, D.</style></author></secondary-authors><tertiary-authors><author><style face="normal" font="default" size="100%">Alschuler, K.</style></author><author><style face="normal" font="default" size="100%">Stobbe, G.</style></author><author><style face="normal" font="default" size="100%">Von Geldern, G.</style></author><author><style face="normal" font="default" size="100%">Kraft, G.</style></author><author><style face="normal" font="default" size="100%">Reynolds, P.</style></author><author><style face="normal" font="default" size="100%">Wundes, A.</style></author><author><style face="normal" font="default" size="100%">Alexander, K.</style></author><author><style face="normal" font="default" size="100%">Kalb, R.</style></author><author><style face="normal" font="default" size="100%">Unruh, K.</style></author><author><style face="normal" font="default" size="100%">Scott, J.</style></author></tertiary-authors></contributors><titles><title><style face="normal" font="default" size="100%">Multiple Sclerosis Project ECHO:  Outreach to rural providers to provide innovative collaborative training using video conferencing</style></title><secondary-title><style face="normal" font="default" size="100%">Annual Meeting  of the National Association of Rehabilitation Research and Training Centers</style></secondary-title></titles><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%">Johnson, K.</style></author></authors><secondary-authors><author><style face="normal" font="default" size="100%">Stobbe, G.</style></author></secondary-authors><tertiary-authors><author><style face="normal" font="default" size="100%">Hertz, D.</style></author><author><style face="normal" font="default" size="100%">Alschuler, K.</style></author><author><style face="normal" font="default" size="100%">Alexander, K.</style></author><author><style face="normal" font="default" size="100%">Wundes, A.</style></author><author><style face="normal" font="default" size="100%">Kraft, G.</style></author><author><style face="normal" font="default" size="100%">Unruh, K.</style></author><author><style face="normal" font="default" size="100%">Kalb, R.</style></author><author><style face="normal" font="default" size="100%">Von Geldern, G.</style></author><author><style face="normal" font="default" size="100%">Reynolds, P.</style></author><author><style face="normal" font="default" size="100%">Scott, J.</style></author></tertiary-authors></contributors><titles><title><style face="normal" font="default" size="100%">Multiple Sclerosis Project Echo:  Outreach to Rural Providers to provide Innovative Collaborative Training Using Video Conferencing</style></title><secondary-title><style face="normal" font="default" size="100%">Northwest Regional Telehealth Resource Center</style></secondary-title></titles><language><style face="normal" font="default" size="100%">eng</style></language></record></records></xml>