{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T14:25:18Z","timestamp":1787495118226,"version":"build-2736575974"},"reference-count":15,"publisher":"BMJ","issue":"7","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Heart"],"accepted":{"date-parts":[[2012,9,25]]},"published-print":{"date-parts":[[2013,4,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To evaluate the scale and clinical importance of loss to follow-up of past patients with serious congenital heart disease, using a common malformation as an example. To better understand the antecedents of loss to specialist follow-up and patients\u2019 attitudes to returning.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Cohort study using NHS number functionality. Content and thematic analysis of telephone interviews of subset contacted after loss to follow-up.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patients, intervention and setting<\/jats:title>\n                    <jats:p>Longitudinal follow-up of complete consecutive list of all 1085 UK patients with repair of tetralogy of Fallot from single institution 1964\u20132009.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main outcome measures<\/jats:title>\n                    <jats:p>Survival, freedom from late pulmonary valve replacement, loss to specialist follow-up, shortfall in late surgical revisions related to loss to follow-up. Patients\u2019 narrative about loss to follow-up.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>216 (24%) of patients known to be currently alive appear not to be registered with specialist clinics; some are seen in general cardiology clinics. Their median age is 32\u2005years and median duration of loss to follow-up is 22\u2005years; most had been lost before Adult Congenital services had been consolidated in their present form. 48% of the late deaths to date have occurred in patients not under specialist follow-up. None of those lost to specialist follow-up has had secondary pulmonary valve replacement while 188 patients under specialist care have. Patients lost to specialist follow-up who were contacted by telephone had no knowledge of its availability.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Loss to specialist follow-up, typically originating many years ago, impacts patient management.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/heartjnl-2012-302831","type":"journal-article","created":{"date-parts":[[2012,12,21]],"date-time":"2012-12-21T02:16:24Z","timestamp":1356056184000},"page":"485-490","source":"Crossref","is-referenced-by-count":122,"title":["Loss to specialist follow-up in congenital heart disease; out of sight, out of mind"],"prefix":"10.1136","volume":"99","author":[{"given":"Jo","family":"Wray","sequence":"first","affiliation":[{"name":"Department of Cardiology, Great Ormond Street Hospital, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessandra","family":"Frigiola","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Great Ormond Street Hospital, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Bull","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Great Ormond Street Hospital, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Adult Congenital Heart disease Research Network (ACoRN)","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2012,12,20]]},"reference":[{"key":"2025101710422873000_99.7.485.1","unstructured":"A commissioning guide for services for young people and adults with congenital heart disease also known as Grown Ups with Congenital Heart Disease or GUCH). DH Vascular Programme Team; 2006, DH Publications http:\/\/www.dh.gov.uk\/en\/Publicationsandstatistics\/Publications\/PublicationsPolicyAndGuidance\/DH_4134608 (accessed 7 Jun 2011)."},{"key":"2025101710422873000_99.7.485.2","doi-asserted-by":"publisher","DOI":"10.1136\/heart.88.1.1"},{"key":"2025101710422873000_99.7.485.3","doi-asserted-by":"publisher","DOI":"10.1093\/bmb\/ldn005"},{"key":"2025101710422873000_99.7.485.4","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1945.02860200029009"},{"key":"2025101710422873000_99.7.485.5","doi-asserted-by":"crossref","first-page":"152","DOI":"10.1007\/BF00793947","article-title":"Children with congenital heart disease: probability of natural survival","volume":"13","author":"Samanek","year":"1992","journal-title":"Pediatr Cardiol"},{"key":"2025101710422873000_99.7.485.6","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.107.756825"},{"key":"2025101710422873000_99.7.485.7","doi-asserted-by":"publisher","DOI":"10.2307\/2281868"},{"key":"2025101710422873000_99.7.485.8","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"2025101710422873000_99.7.485.9","doi-asserted-by":"publisher","DOI":"10.1016\/S0735-1097(97)00318-5"},{"key":"2025101710422873000_99.7.485.10","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.108.839464"},{"key":"2025101710422873000_99.7.485.11","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehn531"},{"key":"2025101710422873000_99.7.485.12","unstructured":"Aylin P Dunnell K Drever F . Trends in mortality of young adults aged 15\u201344 in England and Wales. Health Stat Q 1999:34\u20139."},{"key":"2025101710422873000_99.7.485.13","doi-asserted-by":"crossref","first-page":"821","DOI":"10.3949\/ccjm.77a.09172","article-title":"When \u2018blue babies\u2019 grow up: what you need to know about tetralogy of fallot","volume":"11","author":"Fox","year":"2010","journal-title":"Cleveland Clin J Med"},{"key":"2025101710422873000_99.7.485.14","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejcnurse.2004.12.003"},{"key":"2025101710422873000_99.7.485.15","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2008.152975"}],"container-title":["Heart"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/heartjnl-2012-302831","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,17]],"date-time":"2025-10-17T17:42:33Z","timestamp":1760722953000},"score":1,"resource":{"primary":{"URL":"https:\/\/heart.bmj.com\/lookup\/doi\/10.1136\/heartjnl-2012-302831"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,12,20]]},"references-count":15,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2013,3,6]]},"published-print":{"date-parts":[[2013,4,1]]}},"alternative-id":["10.1136\/heartjnl-2012-302831"],"URL":"https:\/\/doi.org\/10.1136\/heartjnl-2012-302831","relation":{},"ISSN":["1355-6037","1468-201X"],"issn-type":[{"value":"1355-6037","type":"print"},{"value":"1468-201X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,12,20]]}}}