{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T01:09:57Z","timestamp":1789780197303,"version":"4.0.1"},"reference-count":31,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2017,12,14]],"date-time":"2017-12-14T00:00:00Z","timestamp":1513209600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100000241","name":"Physicians' Services Incorporated Foundation","doi-asserted-by":"publisher","award":["Resident Research Grant"],"award-info":[{"award-number":["Resident Research Grant"]}],"id":[{"id":"10.13039\/501100000241","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2018,3]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>The goal of treatment for individuals with cleft lip and\/or palate (CL\/P) is to improve physical, psychological, and social health. Outcomes of treatment are rarely measured from the patient\u2019s perspective. The aim of the study was to develop a conceptual framework for a patient-reported outcome (PRO) instrument for individuals with clefts (CLEFT-Q) by developing an in-depth understanding of issues that individuals consider to be important.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>The qualitative methodology of interpretive description was used. Setting, Participants, and Intervention: We performed 136 individual in-depth interviews with participants with clefts of any age, presenting for cleft care, across 6 countries. Parents were involved if the child was more comfortable. Interviews were audio-recorded, transcribed verbatim, and coded using constant comparison. The data were used to develop a refined conceptual framework.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Participants described concepts of interest in 3 top-level domains, each of which included subdomains: appearance (face, nose, nostrils, teeth, lips, jaw, cleft lip scar), health-related quality of life (psychological, social, school, speech-related distress), and facial function (speech, eating\/drinking). Participants were able to describe changes over time with regard to the 3 domains.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>A conceptual framework of concepts of interest to individuals with CL\/P formed the basis of the scales in the CLEFT-Q. Each subdomain represents an independently functioning scale. Understanding what matters to patients is essential in guiding PRO measurement.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1055665617732854","type":"journal-article","created":{"date-parts":[[2018,2,13]],"date-time":"2018-02-13T13:03:16Z","timestamp":1518526996000},"page":"442-450","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":94,"title":["What Matters to Patients With Cleft Lip and\/or Palate"],"prefix":"10.1177","volume":"55","author":[{"given":"Karen W. Y.","family":"Wong Riff","sequence":"first","affiliation":[{"name":"Division of Plastic and Reconstructive Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada"},{"name":"Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elena","family":"Tsangaris","sequence":"additional","affiliation":[{"name":"Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Timothy E. E.","family":"Goodacre","sequence":"additional","affiliation":[{"name":"Spires Cleft Center, Oxford Radcliffe Children\u2019s Hospital, Oxford, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher R.","family":"Forrest","sequence":"additional","affiliation":[{"name":"Division of Plastic and Reconstructive Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Lawson","sequence":"additional","affiliation":[{"name":"Ferkauf Graduate School of Psychology, Yeshiva University, Bronx, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea L.","family":"Pusic","sequence":"additional","affiliation":[{"name":"Plastic and Reconstructive Surgery, Memorial Sloan-Kettering Cancer Center, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne F.","family":"Klassen","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, McMaster University, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2017,12,14]]},"reference":[{"key":"bibr1-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1023\/A:1015291021312"},{"key":"bibr2-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/12-255"},{"key":"bibr3-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1420-5"},{"key":"bibr4-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1370\/afm.818"},{"key":"bibr5-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0b013e31822b6a67"},{"key":"bibr6-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1999_036_0001_piiccs2.3.co_2"},{"key":"bibr7-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1016\/j.bodyim.2016.01.003"},{"key":"bibr8-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/10-193"},{"key":"bibr9-1055665617732854","first-page":"1","volume":"25","author":"Heli\u00f6vaara A","year":"2016","journal-title":"J Plast Surg Hand Surg"},{"key":"bibr10-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1093\/ejo\/cji004"},{"key":"bibr11-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2011.11.004"},{"key":"bibr12-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/09-180.1"},{"key":"bibr13-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.014"},{"key":"bibr14-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.013"},{"key":"bibr15-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.320.7227.114"},{"key":"bibr16-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1011024"},{"key":"bibr17-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000002924"},{"key":"bibr18-1055665617732854","first-page":"875","volume-title":"The Sage Encyclopedia of Qualitative Methods","volume":"1","author":"Sandelowski M","year":"2008"},{"key":"bibr19-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/02-119.1.1"},{"key":"bibr20-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/12-054"},{"key":"bibr21-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2016.1143944"},{"key":"bibr22-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/14-269"},{"key":"bibr23-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1016\/S0272-7358(00)00056-8"},{"key":"bibr24-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1997_034_0226_swfaas_2.3.co_2"},{"key":"bibr25-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1098-240X(199704)20:2<169::AID-NUR9>3.0.CO;2-I"},{"key":"bibr26-1055665617732854","volume-title":"Interpretive Description","author":"Thorne SE","year":"2008"},{"key":"bibr27-1055665617732854","doi-asserted-by":"publisher","DOI":"10.1016\/S0007-1226(97)91275-3"},{"key":"bibr28-1055665617732854","volume-title":"Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims","author":"US Food and Drug Administration Guidance for Industry","year":"2009"},{"key":"bibr29-1055665617732854","doi-asserted-by":"publisher","DOI":"10.5694\/j.1326-5377.2008.tb01928.x"},{"key":"bibr30-1055665617732854","doi-asserted-by":"publisher","DOI":"10.7748\/nr2011.07.18.4.38.c8635"},{"key":"bibr31-1055665617732854","first-page":"7","volume":"015467","author":"Wong Riff KW","year":"2017","journal-title":"BMJ Open"}],"container-title":["The Cleft Palate Craniofacial Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1055665617732854","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1055665617732854","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1055665617732854","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T16:22:52Z","timestamp":1777393372000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1055665617732854"}},"subtitle":["An International Qualitative Study Informing the Development of the CLEFT-Q"],"short-title":[],"issued":{"date-parts":[[2017,12,14]]},"references-count":31,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2018,3]]}},"alternative-id":["10.1177\/1055665617732854"],"URL":"https:\/\/doi.org\/10.1177\/1055665617732854","relation":{},"ISSN":["1055-6656","1545-1569"],"issn-type":[{"value":"1055-6656","type":"print"},{"value":"1545-1569","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,12,14]]}}}