{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T09:23:48Z","timestamp":1789982628422,"version":"4.0.1"},"reference-count":26,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2017,9,25]],"date-time":"2017-09-25T00:00:00Z","timestamp":1506297600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["1ZIANS003038"],"award-info":[{"award-number":["1ZIANS003038"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2018,1]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:p><jats:italic>Introduction<\/jats:italic>: The effects of spinal bulbar muscular atrophy (SBMA) on quality of life (QoL) are not well understood. This study describes symptoms from the patient's perspective and the impact these symptoms have on QoL.<jats:italic>Methods<\/jats:italic>: We conducted open\u2010ended interviews with 21 adult men with genetically confirmed SBMA. Using a qualitative framework technique, we coded and analyzed interviews to identify symptoms and resulting themes.<jats:italic>Results<\/jats:italic>: From these interviews, 729 quotations were extracted. We identified 200 SBMA\u2010specific symptoms and 20 symptomatic themes. Weakness was mentioned by all interviewees. Symptoms within the domain of mental health and the specific themes of emotional issues and psychological impact were also frequently mentioned.<jats:italic>Discussion<\/jats:italic>: Numerous symptoms affect QoL for patients with SBMA. We identified previously unrecognized symptoms that are important to address in enhancing clinical care for patients with SBMA and in developing tools to evaluate efficacy in future clinical trials.<jats:italic>Muscle Nerve<\/jats:italic><jats:bold>57<\/jats:bold>: 40\u201344, 2018<\/jats:p>","DOI":"10.1002\/mus.25957","type":"journal-article","created":{"date-parts":[[2017,9,6]],"date-time":"2017-09-06T21:57:17Z","timestamp":1504735037000},"page":"40-44","source":"Crossref","is-referenced-by-count":18,"title":["Patient\u2010identified impact of symptoms in spinal and bulbar muscular atrophy"],"prefix":"10.1002","volume":"57","author":[{"given":"Robert D.","family":"Guber","sequence":"first","affiliation":[{"name":"Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health 35 Convent Drive Bethesda Maryland 20892 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela D.","family":"Kokkinis","sequence":"additional","affiliation":[{"name":"Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health 35 Convent Drive Bethesda Maryland 20892 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alice B.","family":"Schindler","sequence":"additional","affiliation":[{"name":"Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health 35 Convent Drive Bethesda Maryland 20892 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roxanna M.","family":"Bendixen","sequence":"additional","affiliation":[{"name":"Department of Occupational Therapy University of Pittsburgh Pittsburgh Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chad R.","family":"Heatwole","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester Medical Center Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kenneth H.","family":"Fischbeck","sequence":"additional","affiliation":[{"name":"Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health 35 Convent Drive Bethesda Maryland 20892 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Grunseich","sequence":"additional","affiliation":[{"name":"Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health 35 Convent Drive Bethesda Maryland 20892 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,9,25]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.18.7.671"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/352077a0"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/awp258"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/awl096"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1014580219761"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1005344403603"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/acn3.208"},{"key":"e_1_2_6_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(10)70321-5"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/CND.0b013e31829e22e3"},{"key":"e_1_2_6_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23529"},{"key":"e_1_2_6_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073813484804"},{"key":"e_1_2_6_13_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e318260cbe6"},{"key":"e_1_2_6_14_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000002225"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.24097"},{"key":"e_1_2_6_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.24725"},{"key":"e_1_2_6_17_1","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1093\/oso\/9780198527695.003.0002","volume-title":"Assessing quality of life in clinical trials: methods and practice","author":"McColl E","year":"2005"},{"key":"e_1_2_6_18_1","doi-asserted-by":"publisher","DOI":"10.4324\/9780203413081_chapter_9"},{"key":"e_1_2_6_19_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/awl096"},{"key":"e_1_2_6_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2014.06.433"},{"key":"e_1_2_6_21_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000151978.74467.E7"},{"key":"e_1_2_6_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jns.2013.12.010"},{"key":"e_1_2_6_23_1","unstructured":"RyanCL BaumanK.Educational attainment in the United States: 2015. 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