{"id":9776,"date":"2016-09-14T07:05:18","date_gmt":"2016-09-14T07:05:18","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=9776"},"modified":"2016-09-14T07:05:18","modified_gmt":"2016-09-14T07:05:18","slug":"a-better-way-to-measure-mecfs-experience-is-needed","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/a-better-way-to-measure-mecfs-experience-is-needed\/","title":{"rendered":"A better way to measure ME\/CFS experience is needed"},"content":{"rendered":"<h3>Research abstract:<\/h3>\n<p>PURPOSE:<\/p>\n<p>Debilitating fatigue is a core symptom of myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME\/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME\/CFS patients and matched controls.<\/p>\n<p>METHODS:<\/p>\n<p>Two hundred and forty ME\/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the <a href=\"http:\/\/link.springer.com\/chapter\/10.1007\/978-1-4419-9893-4_57?no-access=true\" target=\"_blank\">Multidimensional Fatigue Inventory-20<\/a>, <a href=\"http:\/\/condor.depaul.edu\/ljason\/cfs\/measures.html\" target=\"_blank\">DePaul Symptom Questionnaire<\/a>, and <a href=\"https:\/\/en.wikipedia.org\/wiki\/SF-36\" target=\"_blank\">RAND SF-36<\/a>.<\/p>\n<p>RESULTS:<\/p>\n<p>The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5 % of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME\/CFS patients and controls (OR 1.23, p &lt; .001) and predicted ceiling effects on other patient-reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls.<\/p>\n<p>CONCLUSIONS:<\/p>\n<p>Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME\/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient-reported outcome measures with ME\/CFS patients; however, an improved multidimensional patient-reported outcome tool for measuring ME\/CFS-related symptoms is warranted.<\/p>\n<p><a href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/27600520\" target=\"_blank\">The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis\/chronic fatigue syndrome<\/a> by KW Murdock, XS Wang, Q Shi, CS Cleeland, CP Fagundes, SD Vernon <span style=\"text-decoration: underline;\">in<\/span> <em>Qual Life Res<\/em>. 2016 Sep 6.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Research abstract: PURPOSE: Debilitating fatigue is a core symptom of myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME\/CFS patients is problematic due to ceiling effects and issues with reliability and validity. &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/a-better-way-to-measure-mecfs-experience-is-needed\/\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[603,35,723,724,24,25,26],"class_list":["post-9776","post","type-post","status-publish","format-standard","hentry","category-news","tag-depaul-symptom-questionnaire","tag-dr-suzanne-vernon","tag-mfi-scales","tag-multidimensional-fatigue-inventory","tag-patient-reported-outcome-measures","tag-proms","tag-sf-36"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-2xG","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/9776","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=9776"}],"version-history":[{"count":3,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/9776\/revisions"}],"predecessor-version":[{"id":9847,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/9776\/revisions\/9847"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=9776"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=9776"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=9776"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}