{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,4]],"date-time":"2026-11-04T18:03:03Z","timestamp":1793815383353,"version":"4.6.1"},"reference-count":40,"publisher":"Springer Science and Business Media LLC","issue":"1","funder":[{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","award":["299133"],"award-info":[{"award-number":["299133"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Health Qual Life Outcomes"],"published-print":{"date-parts":[[2017,12]]},"DOI":"10.1186\/s12955-017-0805-7","type":"journal-article","created":{"date-parts":[[2017,11,27]],"date-time":"2017-11-27T22:29:42Z","timestamp":1511821782000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":34,"title":["Translation and cultural adaptation of the CLEFT-Q for use in Colombia, Chile, and Spain"],"prefix":"10.1186","volume":"15","author":[{"given":"Elena","family":"Tsangaris","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen W. Y. Wong","family":"Riff","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Federico","family":"Vargas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mirta Palomares","family":"Aguilera","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Macarena Miranda","family":"Alarc\u00f3n","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Asteria Albert","family":"Cazalla","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lehana","family":"Thabane","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Achilleas","family":"Thoma","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne F.","family":"Klassen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2017,11,28]]},"reference":[{"issue":"3","key":"805_CR1","doi-asserted-by":"crossref","first-page":"511e","DOI":"10.1097\/PRS.0b013e3182402dd1","volume":"129","author":"SA Tanaka","year":"2012","unstructured":"Tanaka SA, Mahabir RC, Jupiter DC, Menezes JM. Updating the epidemiology of cleft lip with or without cleft palate. Plast Reconstr Surg. 2012;129(3):511e\u20138e.","journal-title":"Plast Reconstr Surg"},{"issue":"1","key":"805_CR2","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1597\/09-217","volume":"48","author":"P Mastroiacovo","year":"2011","unstructured":"Mastroiacovo P, Maraschini A, Leoncini E, Mossey P, Bower C, Castilla EE, Feldkamp ML, Halliday J, Little J, Robert-Gnansia E, Castilla EE, Boulyjenkov V, Harris J, Bower C, Dolk H, Calzolari E, Feldkamp M, Castilla EE, Zezza S, Abramsky L, Addor MC, Arias W, al-Gazali L, Amar E, Baker MA, Barisic I, Bianca S, Nesima G, Bourne D, Boyd P, Calder D, Castilla EE, Cocchi G, Copeland GE, Correa A, Cs\u00e1ky-Szunyogh M, Dutra Mda G, Daley B, Devolz M, De Vigan C, de Walle HE, Dias CM, Doray B, Feldkamp ML, Fornoff J, Garne E, Gatt M, Gillerot Y, Halliday J, Haeusler M, Hilliard M, Hirahara F, Horacek J, Latos-Bielenska A, Law DJ, Lowry R, Luna L, Zubira S, McDonnell R, Merlob P, Merz RD, Morgan M, Mosquera Tenreiro C, Mosley BS, Mutchinick O, Zubira S, Nelen V, Pearson KA, Pierini A, Poetzsch S, Portillo I, Queisser-Luft A, Rautio J, Rickard R, Ritvanen A, Sayed R, Scarano G, Siffel C, S\u00edpek A, Szabova E, Tenconi R, Veazey H, Veghova E, Wertelecki W, Yevtushock L, Zhuchenko LA. IPDTOC Working Group. Prevalence at Birth of Cleft Lip With or Without Cleft Palate: Data From the International Perinatal Database of Typical Oral Clefts (IPDTOC). Cleft Palate Craniofac J. 2011;48(1):66\u201381.","journal-title":"Cleft Palate Craniofac J"},{"key":"805_CR3","unstructured":"Troncoso1 GS, Z\u00fa\u00f1iga HP, Araya JC. Prevalence of cleft lip and palate and risk indicators: study of the reference population of Felix Bulnes university hospital, Santiago de Chile. Rev Esp Cir Oral y Maxilofac 2008;30(1):17\u201325."},{"issue":"1","key":"805_CR4","doi-asserted-by":"crossref","first-page":"65","DOI":"10.7705\/biomedica.v30i1.154","volume":"30","author":"I Zarante","year":"2010","unstructured":"Zarante I, Franco L, L\u00f3pez C, Fern\u00e1ndez N. Frequencies of congenital malformations: assessment and prognosis of 52,744 births in three cities of Colombia. Biomedica. 2010;30(1):65\u201371.","journal-title":"Biomedica"},{"key":"805_CR5","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1111\/j.1601-0825.2009.01588.x","volume":"16","author":"GL Wehby","year":"2010","unstructured":"Wehby GL, Cassel CH. The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Dis. 2010;16:3\u201310.","journal-title":"Oral Dis"},{"key":"805_CR6","doi-asserted-by":"crossref","first-page":"438","DOI":"10.1034\/j.1600-0528.2002.00015.x","volume":"30","author":"D Locker","year":"2002","unstructured":"Locker D, Jokovic A, Stephens M, Kenny D, Tompson B, Guyatt G. Family impact of child oral and orofacial conditions. Community Dent Oral Epidemiol. 2002;30:438\u201348.","journal-title":"Community Dent Oral Epidemiol"},{"issue":"2","key":"805_CR7","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1016\/j.cps.2013.12.001","volume":"41","author":"TJ Sitzman","year":"2014","unstructured":"Sitzman TJ, Allori AC, Thorburn G. Measuring outcomes in cleft lip and palate treatment. Clin Plast Surg. 2014;41(2):311\u20139.","journal-title":"Clin Plast Surg"},{"key":"805_CR8","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1597\/02-119.1.1","volume":"42","author":"G Semb","year":"2005","unstructured":"Semb G, Brattstrom V, Molsted K, Prahl-Andersen B, Shaw WC. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 1: introduction and treatment experience. Cleft Palate Craniofac J. 2005;42:64\u20138.","journal-title":"Cleft Palate Craniofac J."},{"key":"805_CR9","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1597\/09-180.1","volume":"48","author":"RE Long Jr","year":"2011","unstructured":"Long RE Jr, Hathaway R, Daskalogiannakis J, et al. The Americleft study: an inter-center study of treatment outcomes for patients with unilateral cleft lip and palate part 1. Principles and study design. Cleft Palate Craniofac J. 2011;48:239\u201343.","journal-title":"Cleft Palate Craniofac J."},{"key":"805_CR10","first-page":"1","volume":"25","author":"A Heli\u00f6vaara","year":"2016","unstructured":"Heli\u00f6vaara A, K\u00fcseler A, Skaare P, et al. SCANDCLEFT randomised trials of primary surgery for unilateral cleft lip and palate: 6. Dental arch relationships at 5 years. J Plast Surg Hand Surg. 2016;25:1\u20136.","journal-title":"J Plast Surg Hand Surg"},{"key":"805_CR11","doi-asserted-by":"crossref","first-page":"69","DOI":"10.1597\/02-119.2.1","volume":"42","author":"V Brattstrom","year":"2005","unstructured":"Brattstrom V, Molsted K, Prahl-Andersen B, Semb G, Shaw WC. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 2: craniofacial form and nasolabial appearance. Cleft Palate Craniofac J. 2005;42:69\u201377.","journal-title":"Cleft Palate Craniofac J"},{"key":"805_CR12","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1597\/02-119.3.1","volume":"42","author":"K Molsted","year":"2005","unstructured":"Molsted K, Brattstrom V, Prahl-Andersen B, Shaw WC, Semb G. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 3: dental arch relationships. Cleft Palate Craniofac J. 2005;42:78\u201382.","journal-title":"Cleft Palate Craniofac J."},{"key":"805_CR13","doi-asserted-by":"crossref","first-page":"83","DOI":"10.1597\/02-119.4.1","volume":"42","author":"G Semb","year":"2005","unstructured":"Semb G, Brattstrom V, Molsted K, et al. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 4: relationship among treatment outcome, patient\/parent satisfaction, and the burden of care. Cleft Palate Craniofac J. 2005;42:83\u201392.","journal-title":"Cleft Palate Craniofac J."},{"key":"805_CR14","doi-asserted-by":"crossref","first-page":"93","DOI":"10.1597\/02-119.5.1","volume":"42","author":"WC Shaw","year":"2005","unstructured":"Shaw WC, Brattstrom V, Molsted K, Prahl-Andersen B, Roberts CT, Semb G. The Eurocleft study: intercenter study of treatment outcome of patients with complete cleft lip and palate. Part 5: discussion and conclusions. Cleft Palate Craniofac J. 2005;42:93\u20138.","journal-title":"Cleft Palate Craniofac J."},{"issue":"5","key":"805_CR15","doi-asserted-by":"crossref","first-page":"522","DOI":"10.1046\/j.1524-4733.2003.65309.x","volume":"6","author":"C Acquadro","year":"2003","unstructured":"Acquadro C, Berzon R, Dubois D, Leidy NK, Marquis P, Revicki D, Rothman M. Incorporating the patient's perspective into drug development and communication: an ad hoc task force report of the patient-reported outcomes (PRO) harmonization group meeting at the Food and Drug Administration, February 16, 2001. Value Health. 2003;6(5):522\u201331.","journal-title":"Value Health"},{"key":"805_CR16","doi-asserted-by":"crossref","DOI":"10.1017\/CBO9781139166843","volume-title":"Sociolinguistics","author":"RA Hudson","year":"1996","unstructured":"Hudson RA. Sociolinguistics. 2nd ed. Cambridge: Cambridge University Press; 1996.","edition":"2"},{"key":"805_CR17","volume-title":"Atlas de la lengua espa\u00f1ola en el mundo","author":"MF Fern\u00e1ndez","year":"2008","unstructured":"Fern\u00e1ndez MF, Roth OJ. Atlas de la lengua espa\u00f1ola en el mundo. 2nd ed. Spain: Ariel and Fundaci\u00f3n Telef\u00f3nica; 2008.","edition":"2"},{"key":"805_CR18","volume-title":"Spanish dialectal variation in the foreign language classroom: students\u2019 attitudes, instructors\u2019 beliefs and teaching practices, and treatment of variation in textbooks","author":"LM Oliveras","year":"2015","unstructured":"Oliveras LM. Spanish dialectal variation in the foreign language classroom: students\u2019 attitudes, instructors\u2019 beliefs and teaching practices, and treatment of variation in textbooks. Dissertation thesis for the Department of Modern Languages and Cultural Studies: University of Alberta; 2015."},{"key":"805_CR19","doi-asserted-by":"crossref","first-page":"1761","DOI":"10.1002\/art.1780371209","volume":"37","author":"G Singh","year":"1994","unstructured":"Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum. 1994;37:1761\u20139.","journal-title":"Arthritis Rheum"},{"key":"805_CR20","unstructured":"J.-J. Garc\u00eda-Garc\u00eda, E. Gonz\u00e1lez-Pascual, J. Pou-Fern\u00e1ndez, G. Singh1, R. Jim\u00e9nez. Development of a Spanish (Castillian) version of the childhood health assessment questionnaire. Measurement of health status in children with juvenile chronic arthritis. Clin Exp Rheumatol 2000; 18: 95\u2013102."},{"key":"805_CR21","unstructured":"US Food and Drug Administration Guidance for Industry. Patient-Reported Outcome Measures: use in medical product development to support labeling claims. Rockville, MD: Department of Health and Human Services, Food and Drug Administration, Center for Drug Evaluation and Research, 2009."},{"key":"805_CR22","volume-title":"Cross-cultural validation of quality of life measures","author":"DL Patrick","year":"1994","unstructured":"Patrick DL, Wild DJ, Johnson ES, Wagner TH, Martin MA. Cross-cultural validation of quality of life measures. International Perspectives, ed. J. Orley and W. Kuyken. Springer-Verlag, Heidelberg: In Quality of Life Assessment; 1994."},{"issue":"4","key":"805_CR23","doi-asserted-by":"crossref","first-page":"388","DOI":"10.1111\/j.1365-2648.2004.03207.x","volume":"48","author":"GA Tobin","year":"2004","unstructured":"Tobin GA, Begley CM. Methodological rigour within a qualitative framework. J Adv Nurs. 2004;48(4):388\u201396.","journal-title":"J Adv Nurs"},{"issue":"1","key":"805_CR24","first-page":"75","volume":"23","author":"V Bitsch","year":"2005","unstructured":"Bitsch V. Qualitative research: a grounded theory example and evaluation criteria. J. Agribusiness. 2005;23(1):75\u201391.","journal-title":"Agribusiness"},{"key":"805_CR25","doi-asserted-by":"crossref","unstructured":"Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A, Erikson P. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health 2005;8(2)i:94\u2013104.","DOI":"10.1111\/j.1524-4733.2005.04054.x"},{"key":"805_CR26","volume":"7","author":"KWY Wong Riff","year":"2017","unstructured":"Wong Riff KWY, Tsangaris E, Goodacre T, Forrest CR, Pusic AL, Cano SJ, Klassen AF. International multiphase mixed methods study protocol to develop a cross- cultural patient-reported outcome instrument for children and young adults with cleft lip and\/or palate (CLEFT-Q). BMJ Open. 2017;7:e015467.","journal-title":"BMJ Open"},{"issue":"3","key":"805_CR27","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1023\/A:1015291021312","volume":"11","author":"N Aaronson","year":"2002","unstructured":"Aaronson N, Alonso J, Burnam A, Lohr KN, Patrick DL, Perrin E, Stein RE. Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res. 2002;11(3):193\u2013205.","journal-title":"Qual Life Res"},{"issue":"8","key":"805_CR28","doi-asserted-by":"crossref","first-page":"978","DOI":"10.1016\/j.jval.2011.06.013","volume":"14","author":"DL Patrick","year":"2011","unstructured":"Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L. Content validity: establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report, part 2: assessing respondent understanding. Value Health. 2011;14(8):978\u201388.","journal-title":"Value Health"},{"issue":"5","key":"805_CR29","doi-asserted-by":"crossref","first-page":"547","DOI":"10.1016\/j.bjps.2011.11.004","volume":"65","author":"AF Klassen","year":"2012","unstructured":"Klassen AF, Tsangaris E, Forrest CR, Wong KW, Pusic AL, Cano SJ, Syed I, Dua M, Kainth S, Johnson J, Goodacre T. Quality of life of children treated for cleft lip and\/or palate: a systematic review. J Plast Reconstr Aesthet Surg. 2012;65(5):547\u201357.","journal-title":"J Plast Reconstr Aesthet Surg"},{"key":"805_CR30","unstructured":"Wong Riff KWY, Tsangaris E, Forrest CR, Lawson J, Pusic AL, Klassen AF. What Matters to Patients with Cleft Lip and\/or Palate: An International Qualitative Study Informing the Development of the CLEFT-Q. Manuscript submitted for publication."},{"issue":"4","key":"805_CR31","volume":"5","author":"E Tsangaris","year":"2017","unstructured":"Tsangaris E, Wong Riff KWY, Goodacre T, Forrest CR, Dreise M, Sykes J, de Chalain T, Harman K, O\u2019Mahony A, Pusic AL, Thabane L, Thoma A, Klassen AF. Establishing content validity of the CLEFT-Q: a new patient-reported outcome instrument for cleft lip\/palate. PRS GO. 2017;5(4):e1305.","journal-title":"PRS GO"},{"key":"805_CR32","unstructured":"Klassen A Wong Riff K, Longmire N, Albert A, Baker S, Cano S, Chan A, Courtemanche D Dreise M, Goldstein J, Goodacre T, Harman K, Munill M, Palomares MA, Peterson P, Pusic A, Slator R, Stiernman M, Tholpady S, Tsangaris E, Vargas F, Forrest C. Psychometric Findings and Normative Values for the CLEFT-Q based on 2,434 Children and Young Adult Patients with Cleft Lip and\/or Palate from 12 Countries. Manuscript submitted for publication."},{"issue":"7","key":"805_CR33","doi-asserted-by":"crossref","first-page":"618","DOI":"10.1136\/jech.2003.010074","volume":"58","author":"SM Hunt","year":"2004","unstructured":"Hunt SM, Bhopal R. Self-report in clinical and epidemiological studies with non-English speakers: the challenge of language and culture. J Epidemiol Community Health. 2004;58(7):618\u201322.","journal-title":"J Epidemiol Community Health"},{"key":"805_CR34","doi-asserted-by":"crossref","first-page":"1417","DOI":"10.1016\/0895-4356(93)90142-N","volume":"46","author":"F Guillemin","year":"1993","unstructured":"Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46:1417\u201332.","journal-title":"J Clin Epidemiol"},{"key":"805_CR35","volume-title":"Analysis of the cognitive interview in questionnaire design: understanding qualitative research","author":"GB Willis","year":"2015","unstructured":"Willis GB. Analysis of the cognitive interview in questionnaire design: understanding qualitative research. Toronto: Oxford University Press; 2015."},{"key":"805_CR36","doi-asserted-by":"crossref","DOI":"10.4135\/9781412983655","volume-title":"Cognitive interviewing: a tool for improving questionnaire design","author":"GB Willis","year":"2005","unstructured":"Willis GB. Cognitive interviewing: a tool for improving questionnaire design. New York: Sage Publications; 2005."},{"issue":"2","key":"805_CR37","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","volume":"42","author":"PA Harris","year":"2009","unstructured":"Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap) - a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377\u201381.","journal-title":"J Biomed Inform"},{"key":"805_CR38","unstructured":"Dorer B. Advance translation in the 5th round of the European social survey (ESS). FORS working paper series, paper 2011-4. Lausanne: FORS. http:\/\/forscenter.ch\/wp-content\/uploads\/2013\/10\/FORS_WPS_2011-04_Dorer-3.pdf . Accessed 7 June 2016."},{"key":"805_CR39","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1007\/s11136-014-0765-x","volume":"24","author":"A Regnault","year":"2015","unstructured":"Regnault A, Hamel JF, Patrick DL. Pooling of cross-cultural PRO data in multinational clinical trials: how much can poor measurement affect statistical power? Qual Life Res. 2015;24:273\u20137.","journal-title":"Qual Life Res"},{"key":"805_CR40","unstructured":"Tolarova MM, Al-Kharafi L, Tolar M. Boyd C. Pediatric Cleft Lip and Palate Available from: http:\/\/emedicine.medscape.com\/article\/995535-overview . Accessed 10 Nov 2016."}],"container-title":["Health and Quality of Life Outcomes"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s12955-017-0805-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,10,6]],"date-time":"2019-10-06T19:19:36Z","timestamp":1570389576000},"score":1,"resource":{"primary":{"URL":"https:\/\/hqlo.biomedcentral.com\/articles\/10.1186\/s12955-017-0805-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,11,28]]},"references-count":40,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2017,12]]}},"alternative-id":["805"],"URL":"https:\/\/doi.org\/10.1186\/s12955-017-0805-7","relation":{},"ISSN":["1477-7525"],"issn-type":[{"value":"1477-7525","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,11,28]]},"article-number":"228"}}