YP's experience of decision making for orthognathic surgery in CLP_v1
Research type
Research Study
Full title
Young people’s (YP) experience of the decision making process for orthognathic surgery in cleft lip and palate (CLP).
IRAS ID
211335
Contact name
Michelle Acum
Contact email
Sponsor organisation
University of East Anglia
Clinicaltrials.gov Identifier
A094196, Study registration on Cambridge University Hospital R&D database; 16HN22, Study registration on GOSH/ICH R&D database
Duration of Study in the UK
1 years, 4 months, 21 days
Research summary
In the UK, people born with a cleft receive ongoing treatment from birth into young adulthood to optimise both function and appearance. Due to previous cleft surgeries, some people may have an underdeveloped jaw affecting appearance and function. Once their face has stopped growing, usually in late adolescence, young people are offered surgery to reposition their jaw (orthognathic surgery; OS). This surgery is elective - meaning it is not medically necessary, so the patient decides whether to have the surgery or not. Due to the nature of the cleft treatment pathway this is often the first time young people realise they have a choice.
Making a decision about whether to have OS or not can be quite complicated as it affects facial appearance, and possibly speech, and requires a further 1-2 years of orthodontic work to bring the teeth into the correct position before surgery. Despite this, our knowledge of how young people born with a cleft experience the decision making process for OS is limited. To understand what the process is like for young people this study aims to carry out individual interviews with 12 young people, aged 16-25, who have decided to have, or not have, orthognathic surgery for their cleft between 6 months and 3 years ago. Participants will be recruited from two regional cleft centres in the East and South East of England. Interview data collected will be collated and analysed using Thematic Analysis to understand how young people experienced the decision making process for OS.
Results may help improve the way services are set up or delivered and may help the way young people are prepared for and supported to make a decision about OS for their cleft. Findings will be shared with patients, clinical teams and submitted for publication in a research journal.
REC name
London - Brent Research Ethics Committee
REC reference
17/LO/0817
Date of REC Opinion
15 May 2017
REC opinion
Favourable Opinion