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The importance of integration of stakeholder views in core outcome set development : otitis media with effusion in children with cleft palate
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Harman, Nicola L., Bruce, Iain A., Kirkham, Jamie J., Tierney, Stephanie, Callery, Peter, O'Brien, Kevin, Bennett, Alex M. D., Chorbachi, Raouf, Hall, Per N., Harding-Bell, Anne, Parfect, Victoria H., Rumsey, Nichola, Sell, D. A. (Debbie A.), Sharma, Ravi K. and Williamson, P. R. (Paula R.) (2015) The importance of integration of stakeholder views in core outcome set development : otitis media with effusion in children with cleft palate. PLoS one, 10 (6). pp. 1-22. e0129514. doi:10.1371/journal.pone.0129514 ISSN 1932-6203.
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Official URL: http://dx.doi.org/10.1371/journal.pone.0129514
Abstract
Background:
Approximately 75% of children with cleft palate (CP) have Otitis Media with Effusion (OME) histories. Evidence for the effective management of OME in these children is lacking. The inconsistency in outcome measurement in previous studies has led to a call for the development of a Core Outcome Set (COS). Despite the increase in the number of published COS, involvement of patients in the COS development process, and methods to integrate the views of patients and health professionals, to date have been limited.
Methods and findings:
A list of outcomes measured in previous research was identified through reviewing the literature. Opinion on the importance of each of these outcomes was then sought from key stakeholders: Ear, Nose and Throat (ENT) surgeons, audiologists, cleft surgeons, speech and language therapists, specialist cleft nurses, psychologists, parents and children. The opinion of health professionals was sought in a three round Delphi survey where participants were asked to score each outcome using a bespoke online system. Parents and children were also asked to score outcomes in a survey and provided an in-depth insight into having OME through semi-structured interviews. The results of the Delphi survey, interviews and parent/patient survey were brought together in a final consensus meeting with representation from all stakeholders. A final set of eleven outcomes reached the definition of "consensus in" to form the recommended COS: hearing; chronic otitis media (COM); OME; receptive language skills; speech development; psycho social development; acute otitis media (AOM); cholesteatoma; side effects of treatment; listening skills; otalgia.
Conclusions:
We have produced a recommendation about the outcomes that should be measured, as a minimum, in studies of the management of OME in children with CP. The development process included input from key stakeholders and used novel methodology to integrate the opinion of healthcare professionals, parents and children.
Item Type: | Journal Article | ||||||||||
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Subjects: | R Medicine > RF Otorhinolaryngology R Medicine > RJ Pediatrics |
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Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing > Royal College of Nursing Research Institute (RCN) (- July 2017) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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Library of Congress Subject Headings (LCSH): | Otitis media with effusion in children, Cleft palate services | ||||||||||
Journal or Publication Title: | PLoS one | ||||||||||
Publisher: | Public Library of Science | ||||||||||
ISSN: | 1932-6203 | ||||||||||
Official Date: | 26 June 2015 | ||||||||||
Dates: |
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Volume: | 10 | ||||||||||
Number: | 6 | ||||||||||
Number of Pages: | 22 | ||||||||||
Page Range: | pp. 1-22 | ||||||||||
Article Number: | e0129514 | ||||||||||
DOI: | 10.1371/journal.pone.0129514 | ||||||||||
Status: | Peer Reviewed | ||||||||||
Publication Status: | Published | ||||||||||
Access rights to Published version: | Open Access (Creative Commons) | ||||||||||
Date of first compliant deposit: | 30 December 2015 | ||||||||||
Date of first compliant Open Access: | 30 December 2015 | ||||||||||
Funder: | National Institute for Health Research (Great Britain) (NIHR), Healing Foundation, Medical Research Council (Great Britain) (MRC) | ||||||||||
Grant number: | 09/167/02 (NIHR), G0800792 (MRC) |
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