{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,3]],"date-time":"2026-07-03T13:36:01Z","timestamp":1783085761051,"version":"3.54.6"},"reference-count":40,"publisher":"SAGE Publications","issue":"2_suppl","license":[{"start":{"date-parts":[[2021,11,12]],"date-time":"2021-11-12T00:00:00Z","timestamp":1636675200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Hand (New York, N,Y.)"],"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Madelung deformity is a rare congenital hand difference with little known regarding the patient perspective. In this cross-sectional survey study, we harnessed the global reach of social media to understand the clinical spectrum of Madelung deformity and its impact on physical, mental, and social health.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A survey was developed based on a previously published protocol and multiple Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. The survey was distributed on several Madelung deformity communities on Facebook and Instagram. T-scores were calculated, interpreted, and compared between patients who underwent surgery and those who did not. Correlations between scores were calculated using the Spearman rank correlation coefficient.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Mean PROMIS scores for adults were as follows: pain intensity, 4.9 \u00b1 2.8; pain interference, 57.6 \u00b1 10.0; upper extremity, 35.2 \u00b1 8.1; depression, 53.8 \u00b1 11.1; anxiety, 55.4 \u00b1 11.4; and ability to participate in social roles and activities, 42.5 \u00b1 7.7. Mean scores for children were as follows: pain intensity, 5.0 \u00b1 2.8; pain interference, 55.7 \u00b1 11.3; upper extremity function, 24.6 \u00b1 10.4; depressive symptoms, 57.7 \u00b1 11.3; anxiety, 57.3 \u00b1 11.9; and peer relationships, 42.2 \u00b1 10.3.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Madelung deformity has significant effects on patients\u2019 physical, mental, and social well-being, even after surgical treatment. Using social media, we were able to compensate for Madelung deformity\u2019s rarity by engaging an international audience, demonstrating the feasibility to conduct research through it, and providing a global perspective of the disease entity.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/15589447211054133","type":"journal-article","created":{"date-parts":[[2021,11,12]],"date-time":"2021-11-12T23:41:09Z","timestamp":1636760469000},"page":"24S-31S","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":4,"title":["#MadelungDeformity: Insights Into a Rare Congenital Difference Using Social Media"],"prefix":"10.1177","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3312-0469","authenticated-orcid":false,"given":"Abbas","family":"Peymani","sequence":"first","affiliation":[{"name":"University of Amsterdam, The Netherlands"},{"name":"Harvard Medical School, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Max M.","family":"Lokhorst","sequence":"additional","affiliation":[{"name":"University of Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Austin D.","family":"Chen","sequence":"additional","affiliation":[{"name":"Harvard Medical School, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chantal M.A.M.","family":"van der Horst","sequence":"additional","affiliation":[{"name":"University of Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernard T.","family":"Lee","sequence":"additional","affiliation":[{"name":"Harvard Medical School, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samuel J.","family":"Lin","sequence":"additional","affiliation":[{"name":"Harvard Medical School, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon D.","family":"Strackee","sequence":"additional","affiliation":[{"name":"University of Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2021,11,12]]},"reference":[{"key":"bibr1-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2005.09.001"},{"key":"bibr2-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1097\/00009957-200110000-00015"},{"key":"bibr3-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1093\/hmg\/9.5.695"},{"key":"bibr4-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1038\/ng0198-67"},{"key":"bibr5-15589447211054133","volume-title":"The Care of Congenital Hand Anomalies","author":"Flatt AE.","year":"1994"},{"key":"bibr6-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1016\/j.main.2015.10.001"},{"key":"bibr7-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2015.03.033"},{"key":"bibr8-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1177\/1558944718793179"},{"key":"bibr9-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000001047"},{"key":"bibr10-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0000000000000732"},{"key":"bibr11-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2017.10.006"},{"key":"bibr12-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2014.10.038"},{"key":"bibr13-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000004811"},{"key":"bibr14-15589447211054133","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.04.011"},{"key":"bibr15-15589447211054133","unstructured":"Sabino G, Mills A, Jonker A, et al. 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