Discrepancy in concerns between children with scoliosis +their parents
Research type
Research Study
Full title
Do children with scoliosis differ from their parents and carers in their concerns about their condition- a study of children with adolescent idiopathic scoliosis in an outpatient setting.
IRAS ID
117425
Contact name
Patrick G Hourigan
Contact email
Research summary
Viewed from behind, the spine is usually straight. In scoliosis the spine is bent off to one side and rotated. This particularly affects adolescent girls (aged 11-16). Surgery is used to prevent further deterioration in spinal shape, and to try and correct some of the deformity. Surgery is essentially a cosmetic procedure and carries with it the potential for serious complications if it does not go well. Up to one quarter of patients are believed to be dissatisfied with the final outcome of surgery. Not all patients with scoliosis need an operation.
Parents/carers of children under 16 years old are likely to give consent for surgery rather than the children themselves. Results of surgery are often viewed with more enthusiasm by the parents/carer than the child. As the surgery is essentially a cosmetic procedure should not the child have a greater say in decision making about their spine? We believe that the child - even as young as 11 - should have the right not to have surgery so long as there is a medical consensus that deferring surgery will not be detrimental. Later, as the child matures and becomes an adults, they will be able to make their own informed choice about surgery.
We are proposing to run a study specifically looking at the views of adolescent patients attending the RD+E Hospital scoliosis service with idiopathic scoliosis and comparing those views with those of their parents/carers. We have a simple questionnaire that asks the patient and parents/carer to list their concerns about the condition.
The study is to identify if there are differing views from the outset of diagnosis of scoliosis between child and parents/carer, and to see if the child’s views change what would otherwise have been the management decision about their care taken by the parents/carer.
REC name
North of Scotland Research Ethics Committee 1
REC reference
13/NS/0064
Date of REC Opinion
14 Jun 2013
REC opinion
Further Information Favourable Opinion