{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T04:25:14Z","timestamp":1772166314193,"version":"3.50.1"},"reference-count":28,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,12,30]],"date-time":"2024-12-30T00:00:00Z","timestamp":1735516800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,12,30]],"date-time":"2024-12-30T00:00:00Z","timestamp":1735516800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100011666","name":"Ehlers-Danlos Society","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011666","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","award":["K23AR078337"],"award-info":[{"award-number":["K23AR078337"]}],"id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>After diagnosis of Ehlers Danlos Syndrome (EDS), it is unclear what information patients and parents need and understand about EDS. The objective of this study is to characterize patient and parent knowledge and concerns about EDS after a diagnosis of EDS is made to determine patient and parent concerns and identify barriers that cause discomfort with the diagnosis.6<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A convenience sample of patient and parent dyads were recruited after new diagnosis of EDS. Patients and parents completed questionnaires that assessed knowledge, comfort, and barriers of EDS before and after diagnosis, EDS education materials accessed, and additional clinical needs and concerns.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Seventy-two dyads completed the survey.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Many respondents actively seek information on the diagnosis and management of EDS. Parents and patients look for information about EDS differently. Parents have more concerns after diagnosis and both want well-constructed, empirically supported educational materials delivered via multiple modalities, which makes clinical guidelines more essential.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-024-03517-y","type":"journal-article","created":{"date-parts":[[2024,12,30]],"date-time":"2024-12-30T00:45:39Z","timestamp":1735519539000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient and parent knowledge, understanding, and concerns after a new diagnosis of Ehlers Danlos syndrome"],"prefix":"10.1186","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0986-4991","authenticated-orcid":false,"given":"Jordan T.","family":"Jones","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lora L.","family":"Black","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William R.","family":"Black","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2024,12,30]]},"reference":[{"issue":"1","key":"3517_CR1","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1002\/ajmg.c.31552","volume":"175","author":"F Malfait","year":"2017","unstructured":"Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):8\u201326. https:\/\/doi.org\/10.1002\/ajmg.c.31552.","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"3517_CR2","doi-asserted-by":"publisher","unstructured":"Bloom L, Byers P, Francomano C, Tinkle B, Malfait F, Steering Committee of The International Consortium on the Ehlers\u2010Danlos Syndromes. The international consortium on the Ehlers\u2013Danlos syndromes. In: American Journal of Medical Genetics Part C: Seminars in Medical Genetics 2017 (Vol. 175, No. 1, pp. 5\u20137). https:\/\/doi.org\/10.1002\/ajmg.c.31547","DOI":"10.1002\/ajmg.c.31547"},{"issue":"8","key":"3517_CR3","doi-asserted-by":"publisher","first-page":"2640","DOI":"10.1002\/art.20376","volume":"50","author":"AJ Hakim","year":"2004","unstructured":"Hakim AJ, Cherkas LF, Grahame R, Spector TD, MacGregor AJ. The genetic epidemiology of joint hypermobility: a population study of female twins. Arthritis Rheum. 2004;50(8):2640\u20134. https:\/\/doi.org\/10.1002\/art.20376.","journal-title":"Arthritis Rheum"},{"issue":"1","key":"3517_CR4","doi-asserted-by":"publisher","first-page":"168","DOI":"10.1002\/ajmg.c.31543","volume":"175","author":"A Hakim","year":"2017","unstructured":"Hakim A, O\u2019Callaghan C, De Wandele I, Stiles L, Pocinki A, Rowe P. Cardiovascular autonomic dysfunction in Ehlers-Danlos syndrome-Hypermobile type. Am J Med Genet C Semin Med Genet. 2017;175(1):168\u201374. https:\/\/doi.org\/10.1002\/ajmg.c.31543.","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"1","key":"3517_CR5","doi-asserted-by":"publisher","first-page":"181","DOI":"10.1002\/ajmg.c.31546","volume":"175","author":"A Fikree","year":"2017","unstructured":"Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. Gastrointestinal involvement in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):181\u20137. https:\/\/doi.org\/10.1002\/ajmg.c.31546.","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"1","key":"3517_CR6","doi-asserted-by":"publisher","first-page":"148","DOI":"10.1002\/ajmg.c.31539","volume":"175","author":"M Castori","year":"2017","unstructured":"Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C Semin Med Genet. 2017;175(1):148\u201357. https:\/\/doi.org\/10.1002\/ajmg.c.31539.","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"1","key":"3517_CR7","doi-asserted-by":"publisher","first-page":"158","DOI":"10.1002\/ajmg.c.31545","volume":"175","author":"RH Engelbert","year":"2017","unstructured":"Engelbert RH, Juul-Kristensen B, Pacey V, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome\/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158\u201367. https:\/\/doi.org\/10.1002\/ajmg.c.31545.","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"8","key":"3517_CR8","doi-asserted-by":"publisher","first-page":"1403","DOI":"10.1111\/head.12417","volume":"54","author":"VT Martin","year":"2014","unstructured":"Martin VT, Neilson D. Joint hypermobility and headache: the glue that binds the two together\u2013part 2. Headache. 2014;54(8):1403\u201311. https:\/\/doi.org\/10.1111\/head.12417.","journal-title":"Headache"},{"issue":"1","key":"3517_CR9","doi-asserted-by":"publisher","first-page":"175","DOI":"10.1002\/ajmg.c.31542","volume":"175","author":"A Hakim","year":"2017","unstructured":"Hakim A, De Wandele I, O\u2019Callaghan C, Pocinki A, Rowe P. Chronic fatigue in Ehlers-Danlos syndrome-hypermobile type. Am J Med Genet C Semin Med Genet. 2017;175(1):175\u201380. https:\/\/doi.org\/10.1002\/ajmg.c.31542.","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"1","key":"3517_CR10","doi-asserted-by":"publisher","first-page":"70","DOI":"10.1001\/jamafacial.2017.0793","volume":"20","author":"AW Joseph","year":"2018","unstructured":"Joseph AW, Joseph SS, Francomano CA, Kontis TC. Characteristics, diagnosis, and management of Ehlers-Danlos syndromes: a review. JAMA Facial Plast Surg. 2018;20(1):70\u20135. https:\/\/doi.org\/10.1001\/jamafacial.2017.0793.","journal-title":"JAMA Facial Plast Surg"},{"key":"3517_CR11","doi-asserted-by":"publisher","first-page":"2333794X2211128","DOI":"10.1177\/2333794X221112841","volume":"9","author":"JT Jones","year":"2022","unstructured":"Jones JT, Black WR. Provider knowledge and experience in care, management, and education of pediatric Ehlers-Danlos syndrome. Glob Pediatr Health. 2022;9:2333794X221112841. https:\/\/doi.org\/10.1177\/2333794X221112841.","journal-title":"Glob Pediatr Health."},{"key":"3517_CR12","doi-asserted-by":"publisher","first-page":"2333794X2312120","DOI":"10.1177\/2333794X231212081","volume":"10","author":"WR Black","year":"2023","unstructured":"Black WR, Black LL, Jones JT. Barriers to the diagnosis, care, and management of pediatric patients with Ehlers-Danlos syndrome in the United States: a qualitative analysis. Global Pediatr Health. 2023;10:2333794X231212081. https:\/\/doi.org\/10.1177\/2333794X231212081.","journal-title":"Global Pediatr Health."},{"key":"3517_CR13","doi-asserted-by":"publisher","first-page":"191","DOI":"10.2147\/JMDH.S396221","volume":"16","author":"WR Black","year":"2023","unstructured":"Black WR, Jones JT, Rush ET, Malloy Walton L, Harding A. Development of a multidisciplinary clinic for patients with Ehlers Danlos syndromes: considerations and strategies. J Multidiscip Healthc. 2023;16:191\u20135. https:\/\/doi.org\/10.2147\/JMDH.S396221.","journal-title":"J Multidiscip Healthc"},{"issue":"1","key":"3517_CR14","doi-asserted-by":"publisher","first-page":"138","DOI":"10.1007\/s42399-022-01218-w","volume":"4","author":"DRT Knight","year":"2022","unstructured":"Knight DRT, Confiado SM, Bruno KA, et al. Establishing an Ehlers-Danlos syndrome clinic: lessons learned. SN Compr Clin Med. 2022;4(1):138. https:\/\/doi.org\/10.1007\/s42399-022-01218-w.","journal-title":"SN Compr Clin Med"},{"issue":"4","key":"3517_CR15","doi-asserted-by":"publisher","first-page":"416","DOI":"10.1002\/ajmg.c.31935","volume":"187","author":"CME Halverson","year":"2021","unstructured":"Halverson CME, Clayton EW, Garcia Sierra A, Francomano C. Patients with Ehlers-Danlos syndrome on the diagnostic odyssey: rethinking complexity and difficulty as a hero\u2019s journey. Am J Med Genet C Semin Med Genet. 2021;187(4):416\u201324. https:\/\/doi.org\/10.1002\/ajmg.c.31935.","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"3517_CR16","doi-asserted-by":"publisher","first-page":"263300402110220","DOI":"10.1177\/26330040211022033","volume":"2","author":"J Langhinrichsen-Rohling","year":"2021","unstructured":"Langhinrichsen-Rohling J, Lewis CL, McCabe S, et al. They\u2019ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients\u2019 current symptoms, unmet needs and healthcare expectations. Ther Adv Rare Dis Jan-Dec. 2021;2:26330040211022030. https:\/\/doi.org\/10.1177\/26330040211022033.","journal-title":"Ther Adv Rare Dis Jan-Dec"},{"issue":"140","key":"3517_CR17","first-page":"55","volume":"22","author":"R Likert","year":"1932","unstructured":"Likert R. A technique for the measurement of attitudes. Arch Psychol. 1932;22(140):55.","journal-title":"Arch Psychol"},{"issue":"11","key":"3517_CR18","doi-asserted-by":"publisher","first-page":"e2057","DOI":"10.1002\/mgg3.2057","volume":"10","author":"JT Jones","year":"2022","unstructured":"Jones JT, Black WR, Cogan W, Callen E. Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome. Mol Genet Genomic Med. 2022;10(11):e2057. https:\/\/doi.org\/10.1002\/mgg3.2057.","journal-title":"Mol Genet Genomic Med"},{"issue":"1","key":"3517_CR19","doi-asserted-by":"publisher","first-page":"64","DOI":"10.1038\/s41572-020-0194-9","volume":"6","author":"F Malfait","year":"2020","unstructured":"Malfait F, Castori M, Francomano CA, Giunta C, Kosho T, Byers PH. The Ehlers-Danlos syndromes. Nat Rev Dis Primers. 2020;6(1):64. https:\/\/doi.org\/10.1038\/s41572-020-0194-9.","journal-title":"Nat Rev Dis Primers"},{"issue":"1","key":"3517_CR20","doi-asserted-by":"publisher","first-page":"104","DOI":"10.1186\/s13023-023-02717-2","volume":"18","author":"LJ Tofts","year":"2023","unstructured":"Tofts LJ, Simmonds J, Schwartz SB, Richheimer RM, O\u2019Connor C, Elias E, Engelbert R, Cleary K, Tinkle BT, Kline AD, Hakim AJ. Pediatric joint hypermobility: a diagnostic framework and narrative review. Orphanet J Dis. 2023;18(1):104. https:\/\/doi.org\/10.1186\/s13023-023-02717-2.","journal-title":"Orphanet J Dis."},{"issue":"9","key":"3517_CR21","doi-asserted-by":"publisher","first-page":"2406","DOI":"10.1002\/ajmg.a.33585","volume":"152A","author":"M Castori","year":"2010","unstructured":"Castori M, Camerota F, Celletti C, Grammatico P, Padua L. Ehlers-Danlos syndrome hypermobility type and the excess of affected females: possible mechanisms and perspectives. Am J Med Genet A. 2010;152A(9):2406\u20138. https:\/\/doi.org\/10.1002\/ajmg.a.33585.","journal-title":"Am J Med Genet A"},{"issue":"9","key":"3517_CR22","doi-asserted-by":"publisher","first-page":"1405","DOI":"10.1002\/jor.22093","volume":"30","author":"SJ Shultz","year":"2012","unstructured":"Shultz SJ, Wideman L, Montgomery MM, Beasley KN, Nindl BC. Changes in serum collagen markers, IGF-I, and knee joint laxity across the menstrual cycle. J Orthop Res. 2012;30(9):1405\u201312. https:\/\/doi.org\/10.1002\/jor.22093.","journal-title":"J Orthop Res"},{"issue":"11\u201312","key":"3517_CR23","doi-asserted-by":"publisher","first-page":"715","DOI":"10.1007\/s11199-017-0841-0","volume":"78","author":"CM Kamp Dush","year":"2018","unstructured":"Kamp Dush CM, Yavorsky JE, Schoppe-Sullivan SJ. What are men doing while women perform extra unpaid labor? leisure and specialization at the transition to parenthood. Sex Roles. 2018;78(11\u201312):715\u201330. https:\/\/doi.org\/10.1007\/s11199-017-0841-0.","journal-title":"Sex Roles"},{"key":"3517_CR24","doi-asserted-by":"publisher","first-page":"205031212211460","DOI":"10.1177\/20503121221146074","volume":"10","author":"JT Jones","year":"2022","unstructured":"Jones JT, Black WR, Moser CN, Rush ET, Malloy WL. Gender dysphoria in adolescents with Ehlers-Danlos syndrome. SAGE Open Med. 2022;10:20503121221146070. https:\/\/doi.org\/10.1177\/20503121221146074.","journal-title":"SAGE Open Med"},{"issue":"8","key":"3517_CR25","doi-asserted-by":"publisher","first-page":"1229","DOI":"10.1111\/pedi.13418","volume":"23","author":"A Lindholm Olinder","year":"2022","unstructured":"Lindholm Olinder A, DeAbreu M, Greene S, et al. ISPAD clinical practice consensus guidelines 2022: diabetes education in children and adolescents. Pediatr Diabetes. 2022;23(8):1229\u201342. https:\/\/doi.org\/10.1111\/pedi.13418.","journal-title":"Pediatr Diabetes"},{"issue":"8","key":"3517_CR26","doi-asserted-by":"publisher","first-page":"e39172","DOI":"10.2196\/39172","volume":"24","author":"S Ashtari","year":"2022","unstructured":"Ashtari S, Taylor AD. The internet knows more than my physician: qualitative interview study of people with rare diseases and how they use online support groups. J Med Internet Res. 2022;24(8):e39172. https:\/\/doi.org\/10.2196\/39172.","journal-title":"J Med Internet Res"},{"issue":"6","key":"3517_CR27","doi-asserted-by":"publisher","first-page":"e2467","DOI":"10.1002\/mgg3.2467","volume":"12","author":"CME Halverson","year":"2024","unstructured":"Halverson CME, Doyle TA, Vershaw S. Social media use by patients with hypermobile Ehlers-Danlos syndrome. Mol Genet Gen Med. 2024;12(6):e2467. https:\/\/doi.org\/10.1002\/mgg3.2467.","journal-title":"Mol Genet Gen Med"},{"key":"3517_CR28","doi-asserted-by":"publisher","first-page":"61","DOI":"10.2147\/RMHP.S7500","volume":"3","author":"RJ Adams","year":"2010","unstructured":"Adams RJ. Improving health outcomes with better patient understanding and education. Risk Manag Healthc Policy. 2010;3:61\u201372. https:\/\/doi.org\/10.2147\/RMHP.S7500.","journal-title":"Risk Manag Healthc Policy"}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-024-03517-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13023-024-03517-y\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-024-03517-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,12,30]],"date-time":"2024-12-30T01:03:50Z","timestamp":1735520630000},"score":1,"resource":{"primary":{"URL":"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-024-03517-y"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12,30]]},"references-count":28,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["3517"],"URL":"https:\/\/doi.org\/10.1186\/s13023-024-03517-y","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.3.rs-4433259\/v1","asserted-by":"object"}]},"ISSN":["1750-1172"],"issn-type":[{"value":"1750-1172","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,12,30]]},"assertion":[{"value":"20 May 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"17 December 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"30 December 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This work was conducted in accordance with the Declaration of Helsinki. Institutional review board approval was obtained from Children\u2019s Mercy Kansas City (IRB Study ID: 00002558). Prior to participation, the study was explained to each study participant and their parent\/legal guardian. Written informed consent and assent were waived by local IRB.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval and consent to participate"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"493"}}