{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,5]],"date-time":"2026-08-05T15:43:14Z","timestamp":1785944594730,"version":"3.56.0"},"reference-count":10,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2022,10,4]],"date-time":"2022-10-04T00:00:00Z","timestamp":1664841600000},"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":["Clinical Endocrinology"],"published-print":{"date-parts":[[2023,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>To investigate the impact of musculoskeletal (MSK)\u2010related symptoms on the quality of life of patients with multiple endocrine neoplasia Type 2b (MEN2B).<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>An online survey was distributed by the Association for Multiple Endocrine Neoplasia Disorders (AMEND) to their members and worldwide via a social media group for MEN2B patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The survey consisted of a detailed questionnaire analysing the MSK\u2010related symptoms and structural deformities of MEN2B patients and their impact on patient's lives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>Forty\u2010eight participants completed the survey.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Participants reported several musculoskeletal complaints; the most prevalent being musculoskeletal weakness at 73% (<jats:italic>n<\/jats:italic>\u2009=\u200935) and pain 58% (<jats:italic>n<\/jats:italic>\u2009=\u200928). The median pain score was 7 (interquartile range [IQR]: 5\u20138) and the frequency of pain was daily in 44% (<jats:italic>n<\/jats:italic>\u2009=\u200915) and constant in 21% (<jats:italic>n<\/jats:italic>\u2009=\u20097). Structural complaints were common with 63% (<jats:italic>n<\/jats:italic>\u2009=\u200930) stating their physique was \u2018different' and 40% (<jats:italic>n<\/jats:italic>\u2009=\u200919) describing marfanoid body features. Spinal curvature and foot deformities were the commonest structural abnormalities with scoliosis 70% (<jats:italic>n<\/jats:italic>\u2009=\u200916) and pes cavus 63% (<jats:italic>n<\/jats:italic>\u2009=\u200922) prevailing. Dental problems were mentioned by 69% (<jats:italic>n<\/jats:italic>\u2009=\u200933) with interdental spacing being the most common complaint at 61% (<jats:italic>n<\/jats:italic>\u2009=\u200920). The musculoskeletal symptoms of MEN2B had a median impact of 6 (IQR: 3\u20139) on quality of life (QOL) with structural deformities 53% (<jats:italic>n<\/jats:italic>\u2009=\u200918) and pain 26% (<jats:italic>n<\/jats:italic>\u2009=\u20099) listed as having the highest impact. Poor MSK health affected exercise, work and mobility.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>We report a high prevalence of musculoskeletal\u2010related complaints in MEN2B which significantly affects QOL. This suggests a need to provide better holistic care including a multidisciplinary team with physiotherapist, orthopaedic and dental specialist input.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cen.14823","type":"journal-article","created":{"date-parts":[[2022,9,26]],"date-time":"2022-09-26T04:55:23Z","timestamp":1664168123000},"page":"221-228","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Frequency and impact of musculoskeletal symptoms on quality of life in MEN2B"],"prefix":"10.1111","volume":"98","author":[{"given":"James W.","family":"Henderson","sequence":"first","affiliation":[{"name":"Barts and the London School of Medicine and Dentistry Queen Mary University of London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8676-4233","authenticated-orcid":false,"given":"Annalisa","family":"Montebello","sequence":"additional","affiliation":[{"name":"Barts and the London School of Medicine and Dentistry Queen Mary University of London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanna","family":"Grey","sequence":"additional","affiliation":[{"name":"Association for Multiple Endocrine Neoplasia Disorders (AMEND)  Kent UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1436-1969","authenticated-orcid":false,"given":"Maralyn","family":"Druce","sequence":"additional","affiliation":[{"name":"Barts and the London School of Medicine and Dentistry Queen Mary University of London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,10,4]]},"reference":[{"issue":"6","key":"e_1_2_6_2_1","first-page":"1076","article-title":"Parent\u2010of\u2010origin effects in multiple endocrine neoplasia type 2B","volume":"55","author":"Carlson KM","year":"1994","journal-title":"Am J Hum Genet"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.28056"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-8587(18)30336-X"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1530\/EJE-12-0919"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1634\/theoncologist.2014-0277"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1530\/ERC-17-0122"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1097\/SLA.0b013e3182a6f43a"},{"key":"e_1_2_6_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1628806"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2018.08.022"},{"key":"e_1_2_6_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-012331"}],"container-title":["Clinical Endocrinology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cen.14823","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/cen.14823","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cen.14823","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,22]],"date-time":"2023-08-22T16:46:37Z","timestamp":1692722797000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cen.14823"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,10,4]]},"references-count":10,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2023,2]]}},"alternative-id":["10.1111\/cen.14823"],"URL":"https:\/\/doi.org\/10.1111\/cen.14823","archive":["Portico"],"relation":{},"ISSN":["0300-0664","1365-2265"],"issn-type":[{"value":"0300-0664","type":"print"},{"value":"1365-2265","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,10,4]]},"assertion":[{"value":"2022-05-29","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-09-11","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-10-04","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}