{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T19:57:07Z","timestamp":1782590227419,"version":"3.54.5"},"reference-count":12,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2018,10,8]],"date-time":"2018-10-08T00:00:00Z","timestamp":1538956800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100008626","name":"Cochlear","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008626","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Clinical Otolaryngology"],"published-print":{"date-parts":[[2019,1]]},"abstract":"<jats:sec><jats:title>Objectives<\/jats:title><jats:p>To scope current service provision across England for management of otitis media with effusion and hearing loss in children with Down syndrome; to explore professional decision\u2010making about managing otitis media with effusion and hearing loss; and to explore patient and public views on the direction of future research.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Mixed methods including a service evaluation of <jats:styled-content style=\"fixed-case\">NHS<\/jats:styled-content> clinical practice through a structured telephone survey; a qualitative study of professional decision\u2010making with in\u2010depth interviews collected and analysed using grounded theory methods; patient\/public involvement consultations.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>Twenty\u2010one audiology services in England took part in the evaluation; 10 professionals participated in the qualitative study; 21 family members, 10 adults with Down syndrome and representatives from two charities contributed to the consultations.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>There was variation across services in the frequency of routine hearing surveillance, approaches to managing conductive hearing loss in infancy and provision of hearing aids and grommets. There was variation in how professionals describe their decision\u2010making, reflecting individual treatment preferences, differing approaches to professional remit and institutional factors. The consultations identified that research should focus on improving practical support for managing the condition and supporting decision\u2010making about interventions.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>There is system\u2010level variation in the provision of services and individual\u2010level variation in how professionals make clinical decisions. As a consequence, there is inequity of access to hearing health care for children with Down syndrome. Future research should focus on developing core outcomes for research and care, and on improving decision support for families.<\/jats:p><\/jats:sec>","DOI":"10.1111\/coa.13228","type":"journal-article","created":{"date-parts":[[2018,9,17]],"date-time":"2018-09-17T19:33:54Z","timestamp":1537212834000},"page":"32-38","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["A mixed\u2010methods study of the management of hearing loss associated with otitis media with effusion in children with Down syndrome"],"prefix":"10.1111","volume":"44","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8520-6005","authenticated-orcid":false,"given":"Amanda","family":"Hall","sequence":"first","affiliation":[{"name":"Children's Hearing Centre St Michael's Hospital University Hospitals Bristol NHS Foundation Trust Bristol UK"},{"name":"Life and Health Sciences Aston University Birmingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Pryce","sequence":"additional","affiliation":[{"name":"Life and Health Sciences Aston University Birmingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iain A.","family":"Bruce","sequence":"additional","affiliation":[{"name":"Paediatric ENT Department Royal Manchester Children's Hospital Manchester University NHS Foundation Trust Manchester Academic Health Science Centre Manchester UK"},{"name":"Division of Infection, Immunity and Respiratory Medicine Faculty of Biology, Medicine and Health University of Manchester Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Callery","sequence":"additional","affiliation":[{"name":"School of Health Sciences University of Manchester Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica","family":"Lakhanpaul","sequence":"additional","affiliation":[{"name":"UCL Great Ormond Street Institute of Child Health London UK"},{"name":"Community Paediatrics Whittington Health NHS London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne G. M.","family":"Schilder","sequence":"additional","affiliation":[{"name":"evidENT, Ear Institute University College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,10,8]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.3310\/hta18600"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/1460-6984.12077"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1097\/MAO.0000000000000464"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1093\/sw\/46.2.125"},{"key":"e_1_2_8_6_1","unstructured":"National Institute of Healthcare Research.Patient and public involvement in health and social care research: a handbook for researchers.https:\/\/www.nihr.ac.uk\/about-us\/CCF\/funding\/how-we-can-help-you\/RDS-PPI-Handbook-2014-v8-FINAL.pdf. Accessed July 12 2018."},{"key":"e_1_2_8_7_1","unstructured":"DSMIG Down Syndrome Medical Interest Group.Basic Medical Surveillance Essentials for People with Down's syndrome: Hearing impairment;2007.http:\/\/www.dsmig.org.uk\/wp-content\/uploads\/2015\/09\/guideline-hear-8.pdf. Accessed December 1 2017."},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-6-35"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/1748-5908-4-75"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.c5146"},{"key":"e_1_2_8_11_1","volume-title":"Realistic Evaluation","author":"Pawson R","year":"1997"},{"key":"e_1_2_8_12_1","unstructured":"NICE.National Institute for Health and Care Excellence. Otitis media with effusion in under 12s: Otitis media with effusion in under 12s: surgery;2008.https:\/\/www.nice.org.uk\/guidance\/cg60. Accessed December 1 2017."},{"key":"e_1_2_8_13_1","unstructured":"ApplebyJ RaleighV FrosiniF et\u00a0al.Variations in health care. The good the bad and the inexplicable. The Kings Fund;2011.https:\/\/www.kingsfund.org.uk\/publications\/variations-health-care. Accessed December 1 2017."}],"container-title":["Clinical Otolaryngology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcoa.13228","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/coa.13228","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,15]],"date-time":"2023-09-15T22:27:44Z","timestamp":1694816864000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/coa.13228"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,10,8]]},"references-count":12,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2019,1]]}},"alternative-id":["10.1111\/coa.13228"],"URL":"https:\/\/doi.org\/10.1111\/coa.13228","archive":["Portico"],"relation":{},"ISSN":["1749-4478","1749-4486"],"issn-type":[{"value":"1749-4478","type":"print"},{"value":"1749-4486","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,10,8]]},"assertion":[{"value":"2018-07-17","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-09-09","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-10-08","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}