Risk attitudes to treatment among athletes with iliac endofibrosis
Research type
Research Study
Full title
Risk attitudes to treatment among athletes with iliac endofibrosis
IRAS ID
240395
Contact name
Ffion Dewi
Contact email
Sponsor organisation
North Bristol NHS Trus
Duration of Study in the UK
0 years, 3 months, 1 days
Research summary
The aim of this study is to investigate patient attitudes towards the risks involved in treatment of iliac endofibrosis (IE). IE is a rare condition affecting high performance athletes e.g. cyclists. Due to narrowing of the main blood vessel to the leg, it causes symptoms of lower limb pain and weakness, often affecting competitive performance. Other than reducing or stopping high intensity exercise, the only known treatment is an operation on the affected blood vessel which carries small risks of infection, prolonged hospital stay, limb loss or death. Operative treatment, with its associated risks, is controversial in this generally young, fit and healthy population. We are interested in the balance between the effect on quality of life with the existing condition and the risk of potentially devastating complications with treatment. We would like to investigate what level of risk is acceptable to patients considering treatment for their condition. \nWe plan to study approximately 50 patients who are known to have IE (symptomatic group), and compare them with another group of athletes without the condition (asymptomatic group). The symptomatic group will be voluntarily recruited from past referrals to an expert surgeon and an IE Facebook support group, and the asymptomatic group from a cyclists’ Facebook group. \nA questionnaire will be conducted by email and / or a telephone call. We will ask about participants’ current health and symptoms, then a series of questions based on a hypothetical symptom scenario to see what level of risk for each complication the participant would be willing to gamble on for the chance of a complete cure. The data will be analysed to give an overall picture of risk acceptance, and whether that seems to be affected by current symptoms. This will help to guide us when planning treatment and counselling patients in the future. \n\n
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
18/YH/0255
Date of REC Opinion
4 Jul 2018
REC opinion
Unfavourable Opinion