{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T22:27:04Z","timestamp":1787956024014,"version":"build-2784847793"},"reference-count":23,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2020,3,12]],"date-time":"2020-03-12T00:00:00Z","timestamp":1583971200000},"content-version":"unspecified","delay-in-days":11,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001809","name":"National Natural Science Foundation of China","doi-asserted-by":"publisher","award":["81873673"],"award-info":[{"award-number":["81873673"]}],"id":[{"id":"10.13039\/501100001809","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2020,2,11]]},"published-print":{"date-parts":[[2020,3]]},"abstract":"<jats:sec><jats:title>Objectives<\/jats:title><jats:p>The aim of our study is to give insight into congenital ectopia lentis (CEL) patients\u2019 care-seeking behaviour and explore the factors affecting their follow-up visits.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Cross-sectional study; in-depth and face-to-face semistructured interview.<\/jats:p><\/jats:sec><jats:sec><jats:title>Setting<\/jats:title><jats:p>A large-scale ophthalmology hospital in China.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>35 patients with CEL and their parents from May 2017 to August 2017.<\/jats:p><\/jats:sec><jats:sec><jats:title>Main outcome measures<\/jats:title><jats:p>Themes and categories. The interviews were audio-recorded, transcribed verbatim, coded and analysed using grounded theory. Data collection was closed when new themes did not emerge in subsequent dialogues.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The factors affecting the timely visits included insufficient awareness of CEL, shame on hereditary disease, lack of effective doctor\u2013patient communication, lack of reliable information online and daily stressors.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Continuing medical education of severe and rare disease, reforming the pattern of medical education, constructing an interactive platform of the disease on the internet and improving healthcare policy are effective ways to improve the diagnosis and treatment status of CEL in China.<\/jats:p><\/jats:sec>","DOI":"10.1136\/bmjopen-2019-030434","type":"journal-article","created":{"date-parts":[[2020,3,13]],"date-time":"2020-03-13T09:20:45Z","timestamp":1584091245000},"page":"e030434","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":8,"title":["What hinders congenital ectopia lentis patients\u2019 follow-up visits? A qualitative study"],"prefix":"10.1136","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5651-1932","authenticated-orcid":false,"given":"Jianqiang","family":"Lin","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ni","family":"Gong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Qianzhong","family":"Cao","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yijing","family":"Zhou","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yitingxue","family":"Cai","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Guangming","family":"Jin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte Aimee","family":"Young","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jing","family":"Yang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yiyao","family":"Wang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danying","family":"Zheng","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2020,3,12]]},"reference":[{"key":"2024052014203172000_10.3.e030434.1","doi-asserted-by":"publisher","DOI":"10.1034\/j.1600-0420.1998.760105.x"},{"key":"2024052014203172000_10.3.e030434.2","doi-asserted-by":"publisher","DOI":"10.3109\/08820538.2013.825276"},{"key":"2024052014203172000_10.3.e030434.3","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(05)66995-4"},{"key":"2024052014203172000_10.3.e030434.4","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-2063"},{"key":"2024052014203172000_10.3.e030434.5","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.2009.072785"},{"key":"2024052014203172000_10.3.e030434.6","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijcard.2012.06.036"},{"key":"2024052014203172000_10.3.e030434.7","doi-asserted-by":"crossref","first-page":"1006","DOI":"10.1007\/s00595-015-1278-0","article-title":"Overview of current surgical strategies for aortic disease in patients with Marfan syndrome","volume":"46","author":"Miyahara","year":"2016","journal-title":"Surg Today"},{"key":"2024052014203172000_10.3.e030434.8","doi-asserted-by":"crossref","first-page":"591","DOI":"10.1080\/14737167.2016.1240619","article-title":"Economic and care considerations of Marfan syndrome","volume":"16","author":"Blankart","year":"2016","journal-title":"Expert Rev Pharmacoecon Outcomes Res"},{"key":"2024052014203172000_10.3.e030434.9","doi-asserted-by":"crossref","first-page":"137","DOI":"10.2147\/TACG.S60472","article-title":"Perspectives on the revised Ghent criteria for the diagnosis of Marfan syndrome","volume":"8","author":"von Kodolitsch","year":"2015","journal-title":"Appl Clin Genet"},{"key":"2024052014203172000_10.3.e030434.10","doi-asserted-by":"crossref","first-page":"935","DOI":"10.1056\/NEJM199010043231402","article-title":"Location on chromosome 15 of the gene defect causing Marfan syndrome","volume":"323","author":"Kainulainen","year":"1990","journal-title":"N Engl J Med"},{"key":"2024052014203172000_10.3.e030434.11","doi-asserted-by":"publisher","DOI":"10.1007\/s00392-016-1028-3"},{"key":"2024052014203172000_10.3.e030434.12","unstructured":"China Development Brief . China rare disease survey report in 2018. Available: http:\/\/www.chinadevelopmentbrief.org.cn\/news-21008.html [Accessed 28 Feb 2018]."},{"key":"2024052014203172000_10.3.e030434.13","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(01)05627-6"},{"key":"2024052014203172000_10.3.e030434.14","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"2024052014203172000_10.3.e030434.15","doi-asserted-by":"publisher","DOI":"10.1136\/heartjnl-2013-304709"},{"key":"2024052014203172000_10.3.e030434.16","unstructured":"Chinese health and family planning statistical Yearbook in 2017. Available: http:\/\/www.yearbookchina.com\/navibooklist-N2017120225-1.html [Accessed 1 Sep 2017]."},{"key":"2024052014203172000_10.3.e030434.17","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0171684","article-title":"Patient experience with outpatient encounters at public hospitals in Shanghai: examining different aspects of physician services and implications of overcrowding","volume":"12","author":"Bao","year":"2017","journal-title":"PLoS One"},{"key":"2024052014203172000_10.3.e030434.18","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1353\/cja.2005.0077","article-title":"Competence, capacity, and informed consent: beyond the cognitive-competence model","volume":"24","author":"Kluge","year":"2005","journal-title":"Can J Aging"},{"key":"2024052014203172000_10.3.e030434.19","doi-asserted-by":"crossref","first-page":"128","DOI":"10.5582\/bst.2017.01092","article-title":"Emphasizing humanities in medical education: promoting the integration of medical scientific spirit and medical humanistic spirit","volume":"11","author":"Song","year":"2017","journal-title":"Biosci Trends"},{"key":"2024052014203172000_10.3.e030434.20","doi-asserted-by":"crossref","first-page":"708","DOI":"10.1016\/S0140-6736(10)60240-1","article-title":"Rare diseases and legislation in China","volume":"375","author":"Wang","year":"2010","journal-title":"Lancet"},{"key":"2024052014203172000_10.3.e030434.21","doi-asserted-by":"crossref","unstructured":"Marfan World . Available: http:\/\/www.marfanworld.org\/ doi:10.1016\/S0140-6736(10)60240-1","DOI":"10.1016\/S0140-6736(10)60240-1"},{"key":"2024052014203172000_10.3.e030434.22","unstructured":"The Marfan Foundation . Available: http:\/\/www.marfan.org\/about-us\/about"},{"key":"2024052014203172000_10.3.e030434.23","doi-asserted-by":"crossref","DOI":"10.1186\/1750-1172-9-90","article-title":"The economic impact of Marfan syndrome: a non-experimental, retrospective, population-based matched cohort study","volume":"9","author":"Achelrod","year":"2014","journal-title":"Orphanet J Rare Dis"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2019-030434","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,20]],"date-time":"2024-05-20T21:20:43Z","timestamp":1716240043000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2019-030434"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,3]]},"references-count":23,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2020,3,12]]},"published-print":{"date-parts":[[2020,3]]}},"alternative-id":["10.1136\/bmjopen-2019-030434"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2019-030434","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,3]]}}}