{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,6]],"date-time":"2026-01-06T13:40:46Z","timestamp":1767706846921,"version":"3.40.5"},"reference-count":23,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2019,7,24]],"date-time":"2019-07-24T00:00:00Z","timestamp":1563926400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2019,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Limb\u2010girdle muscular dystrophy (LGMD) consists of over 30 genetic conditions with varying clinical phenotypes primarily affecting pelvic girdle, shoulder girdle, and other proximal limb muscles. Studies focusing on the physical, mental, and social effects of this disease from the patient's perspective are limited.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Adults with LGMD were interviewed and asked to identify issues that have the greatest impact on their quality of life. Each interview was recorded, transcribed, coded, and analyzed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Participants provided 1385 direct quotes. One hundred sixty\u2010five potential symptoms of importance were identified and grouped into 15 larger themes. The most frequently reported themes included limitations with mobility, difficulty performing activities, social role limitations, and emotional distress.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>There are multiple symptoms that alter the lives of adults with LGMD. These affect their physical, emotional, and social health, and may be amenable to medical intervention.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.26636","type":"journal-article","created":{"date-parts":[[2019,7,12]],"date-time":"2019-07-12T15:49:51Z","timestamp":1562946591000},"page":"419-424","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":22,"title":["Limb\u2010girdle muscular dystrophy: A perspective from adult patients on what matters most"],"prefix":"10.1002","volume":"60","author":[{"given":"Michael","family":"Hunter","sequence":"first","affiliation":[{"name":"Department of Neurology University of Utah School of Medicine Salt Lake City Utah"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chad","family":"Heatwole","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester School of Medicine and Dentistry Rochester New York"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Matthew","family":"Wicklund","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Colorado School of Medicine Aurora Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Conrad C.","family":"Weihl","sequence":"additional","affiliation":[{"name":"Department of Neurology Washington University School of Medicine St Louis Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tahseen","family":"Mozaffar","sequence":"additional","affiliation":[{"name":"UC Irvine\u2010MDA ALS and Neuromuscular Center University of California Irvine Orange California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0790-5315","authenticated-orcid":false,"given":"Jeffrey M.","family":"Statland","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Kansas Medical Center Kansas City Kansas"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3917-4257","authenticated-orcid":false,"given":"Nicholas E.","family":"Johnson","sequence":"additional","affiliation":[{"name":"Department of Neurology Virginia Commonwealth University Richmond Virginia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2019,7,24]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/77.2.169"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000000892"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.spen.2012.09.008"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1017\/cjn.2015.311"},{"key":"e_1_2_9_6_1","first-page":"1","article-title":"Genetic basis of limb\u2010girdle muscular dystrophies: the 2014 update","volume":"33","author":"Nigro V","year":"2014","journal-title":"Acta Myol."},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.25192"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/humu.9357"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2004.10.008"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e3182061ad4"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2008.193"},{"key":"e_1_2_9_12_1","first-page":"891","article-title":"Genetic localization of a newly recognized autosomal dominant limb\u2010girdle muscular dystrophy with cardiac involvement (LGMD1B) to chromosome 1q11\u201021","volume":"60","author":"Kooi AJ","year":"1997","journal-title":"Am J Hum Genet."},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.20283"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-5-31"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s13760-017-0857-9"},{"key":"e_1_2_9_16_1","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1093\/oso\/9780198527695.003.0002","volume-title":"Assessing Quality of Life in Clinical Trials","author":"McColl E","year":"2005"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.4324\/9780203413081_chapter_9"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1047-9651(18)30288-2"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002060-200211001-00012"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23320"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23529"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000002225"},{"key":"e_1_2_9_23_1","first-page":"1411","article-title":"Patient\u2010reported impact of symptoms in myotonic dystrophy type 1","volume":"25","author":"Heatwole C","year":"2012","journal-title":"Neurology."},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/104990910201900109"}],"container-title":["Muscle &amp; 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