{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T04:08:28Z","timestamp":1789963708651,"version":"4.0.1"},"reference-count":50,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2021,9,9]],"date-time":"2021-09-09T00:00:00Z","timestamp":1631145600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>As life expectancy improves for patients with Duchenne muscular dystrophy (DMD), new symptoms are likely to arise. This aims of this study are: (1) to explore the prevalence of a broad variety of symptoms in the various stages of DMD (with and without steroid use); (2) to explore the prevalence of common secondary diagnoses; and (3) to evaluate the social participation level of patients with DMD older than 16\u2009y of age; and to explore correlations between social participation and symptoms.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cross\u2010sectional self\u2010report questionnaire, including questions on functional level and health status, as well as a standardized participation scale was distributed among Dutch patients with DMD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Eighty\u2010four male patients with a mean age of 22.0 (SD\u00a0=\u00a010.0) y were enrolled. The most prevalent and limiting symptoms were difficulty coughing (58%), coldness of hands (57%), contractures (51%), stiffness (49%), fatigue (40%), myalgia (38%), and low speech volume (33%). Prevalent secondary diagnoses included cardiac disease (14%), neurobehavioral diagnosis (13%), low blood pressure (13%), and arthrosis (5%). Social participation correlated negatively with coldness of hands (<jats:italic>r<\/jats:italic>\u00a0=\u00a0\u2212\u2009.29; <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.03), decreased intelligibility (<jats:italic>r<\/jats:italic>\u00a0=\u00a0\u2212\u2009.40; <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.003), and chewing problems (<jats:italic>r<\/jats:italic>\u00a0=\u00a0\u2212\u2009.33; <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.02).<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>The prevalence of a broad spectrum of symptoms and secondary diagnoses is high in patients with DMD, and some of these symptoms are correlated with social participation. Growing awareness of new symptoms and secondary diagnoses among patients, caregivers, and professionals can enhance their recognition, possibly facilitating prevention and early treatment.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.27406","type":"journal-article","created":{"date-parts":[[2021,8,28]],"date-time":"2021-08-28T04:19:25Z","timestamp":1630124365000},"page":"701-709","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Occurrence of symptoms in different stages of <scp>Duchenne<\/scp> muscular dystrophy and their impact on social participation"],"prefix":"10.1002","volume":"64","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9221-5679","authenticated-orcid":false,"given":"Saskia L. S.","family":"Houwen\u2010van Opstal","sequence":"first","affiliation":[{"name":"Amalia Children\u02bcs Hospital  Nijmegen The Netherlands"},{"name":"Radboud University  Nijmegen The Netherlands"},{"name":"Donders Centre for Neuroscience  Nijmegen The Netherlands"},{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5965-2642","authenticated-orcid":false,"given":"Lotte","family":"Heutinck","sequence":"additional","affiliation":[{"name":"Radboud University  Nijmegen The Netherlands"},{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3756-8241","authenticated-orcid":false,"given":"Merel","family":"Jansen","sequence":"additional","affiliation":[{"name":"Radboud University  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yvonne D.","family":"Krom","sequence":"additional","affiliation":[{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"},{"name":"Leiden University Medical Center  Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3452-9650","authenticated-orcid":false,"given":"Edith H. C.","family":"Cup","sequence":"additional","affiliation":[{"name":"Radboud University  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jos G. M.","family":"Hendriksen","sequence":"additional","affiliation":[{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"},{"name":"Kempenhaeghe Center for Neurological Learning Disabilities  Heeze The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7860-7791","authenticated-orcid":false,"given":"Michel A. A. P.","family":"Willemsen","sequence":"additional","affiliation":[{"name":"Amalia Children\u02bcs Hospital  Nijmegen The Netherlands"},{"name":"Radboud University  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4572-1501","authenticated-orcid":false,"given":"Jan J. G. M.","family":"Verschuuren","sequence":"additional","affiliation":[{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"},{"name":"Leiden University Medical Center  Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5892-5143","authenticated-orcid":false,"given":"Erik H.","family":"Niks","sequence":"additional","affiliation":[{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"},{"name":"Leiden University Medical Center  Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1634-1427","authenticated-orcid":false,"given":"Imelda J. M.","family":"de Groot","sequence":"additional","affiliation":[{"name":"Amalia Children\u02bcs Hospital  Nijmegen The Netherlands"},{"name":"Radboud University  Nijmegen The Netherlands"},{"name":"Duchenne Centre Netherlands  Nijmegen and Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,9,9]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)32160-8"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2007.141721"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26129"},{"issue":"2","key":"e_1_2_10_5_1","first-page":"117","article-title":"Survival in Duchenne muscular dystrophy","volume":"31","author":"Rall S","year":"2012","journal-title":"Acta Myol"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2019.0242"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2015.05.005"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30024-3"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073810371004"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2017.1408148"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0212437"},{"key":"e_1_2_10_12_1","first-page":"53","article-title":"Duchenne and Becker muscular dystrophy in adolescents: current perspectives","volume":"9","author":"Andrews JG","year":"2018","journal-title":"Adolesc Health Med Ther"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073817701368"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejpn.2015.04.005"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/13638490400010191"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2016.03.008"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1093\/qjmed\/hci113"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30025-5"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30026-7"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2016.10.002"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-014-7585-3"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.3233\/JND-160185"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2014.883444"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-10-43"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.3233\/JND-140005"},{"key":"e_1_2_10_26_1","unstructured":"TREAT\u2010NMD. TREAT\u2010NMD. 2019. Accessed October 9 2019.https:\/\/treat-nmd.org"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.3233\/JND-140053"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.880040304"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.24346"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/0021-9681(60)90105-3"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(09)70271-6"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.25148"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2013.08.236"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2011.608148"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.3233\/JND-170280"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-009-5012-y"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26340"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejcn.2014.93"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0007114510005180"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-014-7316-9"},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2015.02.012"},{"key":"e_1_2_10_42_1","doi-asserted-by":"publisher","DOI":"10.1590\/0004-282X20160107"},{"key":"e_1_2_10_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2014.05.011"},{"key":"e_1_2_10_44_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073815575575"},{"key":"e_1_2_10_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2016.02.081"},{"key":"e_1_2_10_46_1","first-page":"31","article-title":"Cardiac involvement in Duchenne muscular dystrophy and related dystrophinopathies","volume":"2018","author":"Mavrogeni SI","year":"1687","journal-title":"Methods Mol Biol"},{"key":"e_1_2_10_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2013.05.060"},{"key":"e_1_2_10_48_1","doi-asserted-by":"publisher","DOI":"10.2340\/16501977-0879"},{"key":"e_1_2_10_49_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12959"},{"key":"e_1_2_10_50_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2012-304729"},{"key":"e_1_2_10_51_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073807309775"}],"container-title":["Muscle &amp; Nerve"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.27406","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/mus.27406","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.27406","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,28]],"date-time":"2023-08-28T09:52:02Z","timestamp":1693216322000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/mus.27406"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,9,9]]},"references-count":50,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["10.1002\/mus.27406"],"URL":"https:\/\/doi.org\/10.1002\/mus.27406","archive":["Portico"],"relation":{},"ISSN":["0148-639X","1097-4598"],"issn-type":[{"value":"0148-639X","type":"print"},{"value":"1097-4598","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,9,9]]},"assertion":[{"value":"2021-03-12","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-08-21","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-09-09","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}