{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,15]],"date-time":"2026-08-15T12:27:00Z","timestamp":1786796820302,"version":"build-2736575974"},"reference-count":18,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,8,12]],"date-time":"2026-08-12T00:00:00Z","timestamp":1786492800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To assess child- and parent-reported quality of life and functional outcomes in children managed as nonsyndromic Pierre Robin sequence (nsPRS), using child-reported and parent-reported outcome measures.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Retrospective observational cross-sectional study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Single tertiary craniofacial center.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Children aged 11-20 years followed for nsPRS between 2010 and 2021. Twelve child-parent dyads participated. A pre-specified sensitivity analysis was restricted to children meeting strict nsPRS criteria.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Outcome Measure(s)<\/jats:title>\n                    <jats:p>Child-reported CLEFT-Q scores for feeding, speech, psychological well-being, and social function; parent-reported Pediatric Sleep Questionnaire (PSQ) scores and Behavioral Pediatrics Feeding Assessment Scale (BPFAS) child-behavior frequency scores calculated from the 24 available child-behavior frequency items.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Mean age was 13.5\u2009\u00b1\u20093.9 years. CLEFT-Q scores showed feeding as the best-preserved child-reported domain (86.3\u2009\u00b1\u200912.3), followed by social function (77.0\u2009\u00b1\u200915.0), psychological well-being (69.9\u2009\u00b1\u200918.3), and speech (66.6\u2009\u00b1\u200915.9). Suspected obstructive sleep apnea syndrome according to PSQ screening was identified in 1\/12 patients (8.3%), although habitual snoring was reported in 5\/12 (41.7%). Parent-reported feeding behavior was classified as problematic in 6\/12 families (50.0%). Descriptive cross-instrument comparison showed that 4\/12 children reported high CLEFT-Q feeding scores despite parent-reported BPFAS concerns. Findings were directionally similar in the strict nsPRS sensitivity subgroup.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>In our small cohort, child-reported quality of life at follow-up was globally satisfactory, with preserved feeding scores but lower speech scores. Parent-reported feeding concerns and residual sleep-related symptoms support follow-up that includes both child-reported and parent-reported outcomes, with particular attention to speech rehabilitation, feeding behavior, and sleep-related symptoms.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656261476844","type":"journal-article","created":{"date-parts":[[2026,8,12]],"date-time":"2026-08-12T17:58:36Z","timestamp":1786557516000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Child and Parent-Reported Outcomes in Children Historically Managed as Nonsyndromic Pierre Robin Sequence: Feeding, Speech, and Sleep-Disordered Breathing"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-2060-2185","authenticated-orcid":false,"given":"Bruno","family":"Matos Santos","sequence":"first","affiliation":[{"name":"University Hospital Center of the Canton of Vaud (CHUV)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexis","family":"Poirier","sequence":"additional","affiliation":[{"name":"Geneva University Hospitals (HUG)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hassan","family":"Youssef","sequence":"additional","affiliation":[{"name":"Geneva University Hospitals (HUG)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2174-4549","authenticated-orcid":false,"given":"Anthony S.","family":"de Buys Roessingh","sequence":"additional","affiliation":[{"name":"University Hospital Center of the Canton of Vaud (CHUV)"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,8,12]]},"reference":[{"issue":"9","key":"e_1_3_3_2_2","first-page":"1145","article-title":"Long-term outcomes of children with Pierre Robin sequence: A systematic review","volume":"56","author":"Hsieh YY","year":"2019","unstructured":"Hsieh YY, Liao YF, Fang HW. Long-term outcomes of children with Pierre Robin sequence: A systematic review. Cleft Palate Craniofac J. 2019;56(9):1145-1154.","journal-title":"Cleft Palate Craniofac J"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijporl.2015.01.035"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1213\/ANE.0000000000000301"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0030-6665(05)70279-6"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jormas.2018.05.002"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2016.0796"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-2615"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1177\/019459989811800511"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-1671"},{"key":"e_1_3_3_11_2","unstructured":"Cornu A. S\u00e9quence de Pierre Robin: Etude R\u00e9trospective au CHU de Tours. Thesis. Universit\u00e9 Fran\u00e7ois Rabelais; 2013."},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35773"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000003167"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00784-018-2369-2"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.170289"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000005723"},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(07)61602-X"},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1389-9457(99)00009-X"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.1097\/00004703-200110000-00001"}],"container-title":["The Cleft Palate Craniofacial Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10556656261476844","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/10556656261476844","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10556656261476844","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,15]],"date-time":"2026-08-15T11:57:37Z","timestamp":1786795057000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/10556656261476844"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,12]]},"references-count":18,"alternative-id":["10.1177\/10556656261476844"],"URL":"https:\/\/doi.org\/10.1177\/10556656261476844","relation":{},"ISSN":["1055-6656","1545-1569"],"issn-type":[{"value":"1055-6656","type":"print"},{"value":"1545-1569","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,12]]},"article-number":"10556656261476844"}}