CHOICE
Research type
Research Study
Full title
CHampioning shared decisiOn-making In Craniofacial carE (CHOICE)
IRAS ID
345591
Contact name
Sarah Kilcoyne
Contact email
Sponsor organisation
Oxford University Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 7 months, 30 days
Research summary
The aim of this research is to understand how decisions are made about surgery to improve facial appearance/function in young people with craniosynostosis.
Craniosynostosis is a rare condition where a baby’s skull does not grow properly. Early surgery may be recommended to reshape the skull. As the child grows, craniosynostosis may continue to affect physical health, learning and development, and facial appearance. Management of craniosynostosis therefore involves several different specialists throughout childhood and into adulthood.
As part of their long-term treatment plan, young people with craniosynostosis are offered further surgery to improve the way they look, breathe, see, hear, and speak. These decisions are complicated, physically and emotionally demanding and do not always lead to the desired result.
Shared decision-making involves a conversation between the patient, their caregiver(s) and a health professional(s). This conversation supports the patient to make a decision about treatment that is right for them. Unfortunately, research has shown these conversations are not always carried out in the best way. We want to understand how these conversations currently happen to help us improve decision-making in the future.
Our team includes researchers, specialist clinicians, and patient/caregiver representatives. We will audio-record hospital appointments at the NHS Oxford Craniofacial Unit. This will tell us how decision-making happens in a ‘real-life’ setting. We will interview young people and their caregiver(s) before and after these appointments, to understand their experiences of the decision-making process. We will interview health professionals about their views of shared decision-making, including what they perceive to be difficult or helpful about the process. We will compare our findings to current NHS guidelines. Finally, we will review existing shared decision-making tools and assess whether these could be adapted for use in craniofacial care. Our findings will be shared with participants, the NHS, the craniofacial community, and the wider public.
REC name
West of Scotland REC 3
REC reference
26/WS/0043
Date of REC Opinion
25 Mar 2026
REC opinion
Further Information Favourable Opinion