{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2022,3,30]],"date-time":"2022-03-30T15:20:35Z","timestamp":1648653635095},"reference-count":17,"publisher":"Cambridge University Press (CUP)","issue":"2","license":[{"start":{"date-parts":[[2017,8,29]],"date-time":"2017-08-29T00:00:00Z","timestamp":1503964800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":["www.cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2018,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951117001810_abs1\" sec-type=\"general\"><jats:title>Background<\/jats:title><jats:p>Patient-reported outcomes and epidemiological studies in adults with tetralogy of Fallot are lacking. Recruitment and longitudinal follow-up investigation across institutions is particularly challenging. Objectives of this study were to assess the feasibility of recruiting adult patients with tetralogy of Fallot for a patient-reported outcomes study, describe challenges for recruitment, and create an interactive, online tetralogy of Fallot registry.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951117001810_abs2\" sec-type=\"methods\"><jats:title>Methods<\/jats:title><jats:p>Adult patients living with tetralogy of Fallot, aged 18\u201358 years, at the University of North Carolina were identified using diagnosis code query. A survey was designed to collect demographics, symptoms, history, and birth mother information. Recruitment was attempted by phone (Part I, n=20) or by email (Part II, n=20). Data analysis included thematic grouping of recruitment challenges and descriptive statistics. Feasibility threshold was 75% for recruitment and for data fields completed per patient.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951117001810_abs3\" sec-type=\"results\"><jats:title>Results<\/jats:title><jats:p>In Part I, 60% (12\/20) were successfully contacted and eight (40%) were enrolled. Demographics and birth mother information were obtained for all enrolled patients. In Part II, 70% (14\/20) were successfully contacted; 30% (6\/20) enrolled and completed all data fields linked to REDCap database; the median time for survey completion was 8 minutes. Half of the patients had cardiac operations\/procedures performed at more than one hospital. Automatic electronic data entry from the online survey was uncomplicated.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951117001810_abs4\" sec-type=\"conclusions\"><jats:title>Conclusions<\/jats:title><jats:p>Although recruitment (54%) fell below our feasibility threshold, enrolled individuals were willing to complete phone or online surveys. Incorrect contact information, privacy concerns, and patient-reported time constraints were challenges for recruitment. Creating an online survey and linked database is technically feasible and efficient for patient-reported outcomes research.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951117001810","type":"journal-article","created":{"date-parts":[[2017,8,29]],"date-time":"2017-08-29T07:02:05Z","timestamp":1503990125000},"page":"269-275","update-policy":"http:\/\/dx.doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Feasibility of a healthcare system-based tetralogy of Fallot patient registry"],"prefix":"10.1017","volume":"28","author":[{"given":"Audrey L.","family":"Khoury","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eric G.","family":"Jernigan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Muntasir H.","family":"Chowdhury","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura R.","family":"Loehr","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer S.","family":"Nelson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2017,8,29]]},"reference":[{"key":"S1047951117001810_ref4","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.106.183216"},{"key":"S1047951117001810_ref9","doi-asserted-by":"publisher","DOI":"10.1002\/bdra.23566"},{"key":"S1047951117001810_ref12","volume-title":"ICD-9-CM: International Classification of Diseases, 9th Revision, Clinical Modification","year":"1996"},{"key":"S1047951117001810_ref17","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-2966"},{"key":"S1047951117001810_ref5","first-page":"272","article-title":"Tetralogy of Fallot \u2013 the first 300 years","volume":"21","author":"Neill","year":"1994","journal-title":"Tex Heart Inst J"},{"key":"S1047951117001810_ref13","volume-title":"Stata Statistical Software: Release 13","year":"2013"},{"key":"S1047951117001810_ref11","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.116.004148"},{"key":"S1047951117001810_ref1","unstructured":"NIH. What is tetralogy of Fallot? National Heart, Lung, and Blood Institute. Retrieved July 1, 2011, from http:\/\/www.nhlbi.nih.gov\/health\/health-topics\/topics\/tof."},{"key":"S1047951117001810_ref3","unstructured":"North Carolina Department of Health and Human Services. Frequency of selected birth defects in North Carolina. North Carolina State Center for Health Statistics. Retrieved July 19, 2013, from http:\/\/www.schs.state.nc.us\/data\/bd\/frequency.htm."},{"key":"S1047951117001810_ref14","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"S1047951117001810_ref10","unstructured":"North Carolina Department of Health and Human Services. Birth defects monitoring program. North Carolina State Center for Health Statistics. Retrieved July 29, 2016, from http:\/\/www.schs.state.nc.us\/units\/bdmp."},{"key":"S1047951117001810_ref6","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejcts.2008.06.050"},{"key":"S1047951117001810_ref15","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.2764"},{"key":"S1047951117001810_ref16","doi-asserted-by":"publisher","DOI":"10.1093\/pubmed\/fdv099"},{"key":"S1047951117001810_ref2","unstructured":"Centers for Disease Control and Prevention. Facts about tetralogy of Fallot. National Center on Birth Defects and Developmental Disabilities. Retrieved July 17, 2013, from http:\/\/www.cdc.gov\/ncbddd\/heartdefects\/tetralogyoffallot.html."},{"key":"S1047951117001810_ref7","doi-asserted-by":"publisher","DOI":"10.1177\/2150135113512136"},{"key":"S1047951117001810_ref8","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-3345"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951117001810","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,4,15]],"date-time":"2019-04-15T20:16:49Z","timestamp":1555359409000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951117001810\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,8,29]]},"references-count":17,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2018,2]]}},"alternative-id":["S1047951117001810"],"URL":"https:\/\/doi.org\/10.1017\/s1047951117001810","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,8,29]]},"assertion":[{"value":"\u00a9 Cambridge University Press 2017\u00a0","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}}]}}