{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T03:34:50Z","timestamp":1791516890561,"version":"4.3.4"},"reference-count":72,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2022,3,15]],"date-time":"2022-03-15T00:00:00Z","timestamp":1647302400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Special Care in Dentistry"],"published-print":{"date-parts":[[2022,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aims<\/jats:title><jats:p>Intellectual and developmental disabilities are heterogeneous in aetiology and presentation, and one cannot make assumptions about the oral health barriers of those with Rett syndrome (RTT) based on findings from generic studies. This study investigated caregivers\u2019 perceptions regarding access to dental care for those with (RTT), and associations of dental treatments received by those with RTT with their caregivers\u2019 perceived value of oral health and perception of their own as well as their daughter's dental anxiety.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods and results<\/jats:title><jats:p>Retrospective observational data of a subset of individuals with confirmed <jats:italic>MECP2<\/jats:italic> mutations in the <jats:italic>InterRett<\/jats:italic> database (<jats:italic>n<\/jats:italic>\u00a0=\u00a0216) were used to explore caregiver\u2010related factors and their relationships with longitudinal data on dental service utilisation, using negative binomial regression. The main reported barriers to dental care access for individuals with RTT were primarily dentist\u2010related in nature, regardless of dental service history. Those with reported dental nonattendance were of older age. Increasing levels of caregiver\u2010reported dental fear were associated with less frequent dental check\u2010ups or for any appointments for affected individuals.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Dentist\u2010related barriers and caregiver\u2010reported anxiety may both adversely affect dental attendance for those with RTT. Future research should explore caregivers\u2019 beliefs and oral health literacy.<\/jats:p><\/jats:sec>","DOI":"10.1111\/scd.12712","type":"journal-article","created":{"date-parts":[[2022,3,15]],"date-time":"2022-03-15T18:28:14Z","timestamp":1647368894000},"page":"565-574","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Enablers and barriers in dental attendance in Rett syndrome: an international observational study"],"prefix":"10.1111","volume":"42","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9737-1294","authenticated-orcid":false,"given":"Yvonne Yee Lok","family":"Lai","sequence":"first","affiliation":[{"name":"UQ Oral Health Centre The University of Queensland School of Dentistry  Herston Australia"},{"name":"Telethon Kids Institute University of Western Australia  Perth Western Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7358-9037","authenticated-orcid":false,"given":"Jenny Anne","family":"Downs","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute University of Western Australia  Perth Western Australia Australia"},{"name":"Curtin School of Allied Health Curtin University  Perth Western Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5178-6080","authenticated-orcid":false,"given":"Kingsley","family":"Wong","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute University of Western Australia  Perth Western Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5551-8147","authenticated-orcid":false,"given":"Sobia","family":"Zafar","sequence":"additional","affiliation":[{"name":"UQ Oral Health Centre The University of Queensland School of Dentistry  Herston Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5874-5687","authenticated-orcid":false,"given":"Laurence James","family":"Walsh","sequence":"additional","affiliation":[{"name":"UQ Oral Health Centre The University of Queensland School of Dentistry  Herston Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6405-5834","authenticated-orcid":false,"given":"Helen Margaret","family":"Leonard","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute University of Western Australia  Perth Western Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,3,15]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e3182242461"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/13810"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000304752.50773.ec"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2012.34"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12093"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e3181d6b852"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.12941"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPG.0b013e318073cbf7"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0000000000001399"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-2002-37083"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e3181d0187f"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.85.1.29"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1203\/01.pdr.0000238302.84552.d0"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37784"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/jsr.12240"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPG.0b013e31824b6159"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPG.0000000000000200"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2007-1641"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.1999.tb00610.x"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22124"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0387-7604(85)80048-6"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000259086.34769.78"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22115"},{"issue":"2","key":"e_1_2_9_25_1","first-page":"39","article-title":"Management of oral and dental problems in Rett syndrome: a narrative review of the literature","volume":"19","author":"Lai YYL","year":"2018","journal-title":"J Disability Oral Health"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.4317\/medoral.19743"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1754-4505.2002.tb01179.x"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12903\u2010018\u20100651\u2010y"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12834"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/odi.13924"},{"issue":"4","key":"e_1_2_9_31_1","first-page":"171","article-title":"Oral health and children with an intellectual disability: a focus group study of parent issues and perceptions","volume":"11","author":"Slack\u2010Smith L","year":"2010","journal-title":"J Disability Oral Health"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bdj.4811571"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1834-7819.2007.tb00490.x"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1741-2358.2009.00320.x"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00784-012-0874-2"},{"key":"e_1_2_9_36_1","volume-title":"Access to Dental Care for Persons with Disabilities in Ontario: A Focus on Persons with Developmental Disabilities","author":"Koneru A","year":"2008"},{"issue":"2","key":"e_1_2_9_37_1","first-page":"121","article-title":"Access to dental care for persons with developmental disabilities in Ontario","volume":"75","author":"Koneru A","year":"2009","journal-title":"J Can Dent Assoc."},{"key":"e_1_2_9_38_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0193953"},{"key":"e_1_2_9_39_1","doi-asserted-by":"publisher","DOI":"10.14219\/jada.archive.2011.0167"},{"key":"e_1_2_9_40_1","doi-asserted-by":"publisher","DOI":"10.1002\/j.0022-0337.2003.67.12.tb03727.x"},{"key":"e_1_2_9_41_1","doi-asserted-by":"publisher","DOI":"10.4248\/ijos.09022"},{"key":"e_1_2_9_42_1","unstructured":"CubbageJ MillsJ.Delivering better health outcomes for people with high support needs and\/or challenging behavior and their families and carers: project outcomes and an exploration of the literature. In. National Disability Insurance Scheme (NDIS) Department of Communities trans: Government of Western Australia;2020:85."},{"key":"e_1_2_9_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rasd.2008.1012.1004"},{"key":"e_1_2_9_44_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37784"},{"key":"e_1_2_9_45_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13726"},{"key":"e_1_2_9_46_1","volume-title":"Stata Statistical Software: Release 16 [computer program]","year":"2019"},{"key":"e_1_2_9_47_1","first-page":"1","volume-title":"National Audit Office","author":"National Audit Office","year":"2020"},{"key":"e_1_2_9_48_1","volume-title":"Oral Health and Well\u2010Being in the United States","author":"American Dental Association Health Policy Institute","year":"2015"},{"key":"e_1_2_9_49_1","unstructured":"N.H.S. England.GP Patient Survey national results and trends. In: Service NH ed. Version 1 ed. England U.K 2020."},{"key":"e_1_2_9_50_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1754-4505.2008.00022.x"},{"issue":"1","key":"e_1_2_9_51_1","first-page":"29","article-title":"Unmet dental needs and barriers to care for children with significant special health care needs","volume":"33","author":"Nelson LP","year":"2011","journal-title":"Pediatr Dent"},{"key":"e_1_2_9_52_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1834-7819.2009.01120.x"},{"issue":"4","key":"e_1_2_9_53_1","first-page":"321","article-title":"Parental perceptions of unmet dental need and cost barriers to care for developmentally disabled children","volume":"23","author":"Schultz ST","year":"2001","journal-title":"Pediatr Dent"},{"key":"e_1_2_9_54_1","volume-title":"Centers for Disease Control and Prevention","author":"National Center for Health Statistics","year":"2019"},{"key":"e_1_2_9_55_1","volume-title":"Medicaid and CHIP Payment and Access Commission","author":"Medicaid and CHIP Payment and Access Commission","year":"2016"},{"key":"e_1_2_9_56_1","volume-title":"Statistics Canada","author":"Statistics Canada","year":"2019"},{"key":"e_1_2_9_57_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bdj.4801538"},{"issue":"1","key":"e_1_2_9_58_1","first-page":"1","article-title":"Access to dental public services by disabled persons","volume":"15","author":"Rocha LL","year":"2015","journal-title":"BMC Oral Health"},{"key":"e_1_2_9_59_1","volume-title":"The US Oral Health Workforce in the Coming Decade: Workshop Summary","year":"2009"},{"key":"e_1_2_9_60_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0234459"},{"issue":"5","key":"e_1_2_9_61_1","first-page":"447","article-title":"Transitioning from pediatric to adult dental care for adolescents with special health care needs: dentist perspectives\u2014Part Two","volume":"37","author":"Bayarsaikhan Z","year":"2015","journal-title":"Pediatr Dent"},{"key":"e_1_2_9_62_1","doi-asserted-by":"publisher","DOI":"10.1111\/adj.12197"},{"key":"e_1_2_9_63_1","unstructured":"CasamassimoPS.Children with special health care needs: patient professional and systems issues. Interfaces Project Proceedings Children's Dental Health Project.2014."},{"issue":"2","key":"e_1_2_9_64_1","first-page":"98","article-title":"Crall JJ. Improving oral health for individuals with special health care needs","volume":"29","year":"2007","journal-title":"Pediatr Dent"},{"issue":"5","key":"e_1_2_9_65_1","first-page":"442","article-title":"Transitioning from pediatric to adult dental care for adolescents with special health care needs: adolescent and parent perspectives\u2014Part One","volume":"37","author":"Cruz S","year":"2015","journal-title":"Pediatr Dent"},{"key":"e_1_2_9_66_1","doi-asserted-by":"publisher","DOI":"10.14219\/jada.archive.2010.0080"},{"key":"e_1_2_9_67_1","doi-asserted-by":"publisher","DOI":"10.1111\/scd.12110"},{"key":"e_1_2_9_68_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0528.2012.00694.x"},{"key":"e_1_2_9_69_1","first-page":"63","article-title":"Barriers to oral health care access among socially vulnerable groups","volume":"8","author":"Vanobbergen J","year":"2007","journal-title":"Journal of Disability and Oral Health"},{"key":"e_1_2_9_70_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-263X.2012.01227.x"},{"key":"e_1_2_9_71_1","doi-asserted-by":"publisher","DOI":"10.1111\/cdoe.12406"},{"key":"e_1_2_9_72_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0300-5712(99)00052-4"},{"key":"e_1_2_9_73_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33314"}],"container-title":["Special Care in Dentistry"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/scd.12712","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/scd.12712","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/scd.12712","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,21]],"date-time":"2023-08-21T23:39:42Z","timestamp":1692661182000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/scd.12712"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,3,15]]},"references-count":72,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2022,11]]}},"alternative-id":["10.1111\/scd.12712"],"URL":"https:\/\/doi.org\/10.1111\/scd.12712","archive":["Portico"],"relation":{},"ISSN":["0275-1879","1754-4505"],"issn-type":[{"value":"0275-1879","type":"print"},{"value":"1754-4505","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,3,15]]},"assertion":[{"value":"2021-10-04","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-02-25","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-03-15","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}