To Date – Proposed New Survey
No further survey of Interstitial Cystitis has been produced since 1999, so current statistic are a little unclear. The COB Foundation is hoping to update their information and conduct a new survey of its members. If you are interested in funding this work or helping with a proposal, please contact Alison Irving, Business Manager at COB Foundation: 0121 702 0820
If you wish to use our survey statistics for research or clinical studies, please contact us for a full survey report and further information.
First Ever Interstitial Cystitis Survey
A survey was conducted amongst members of the charity in 1999 and was the first study of its kind to be undertaken in the UK by the support group. The results were confirmation of what the group had experienced since its inception some five years earlier, and thus provided evidence of what had previously been anecdotal information.
History
It was previously believed that interstitial cystitis was a condition suffered by post-menopausal women only, and that men and younger women do not suffer from the condition. The survey results clearly showed that these two beliefs were false.
A report in the Journal of Urology (February 1999-549), concluded that the incidence of interstitial cystitis in the general population might be three fold greater in Europe than previously reported and stood at 67 cases per 100,000 head of population. It was postulated that the incidence of interstitial cystitis might be as high as 2% of the adult female population (Parsons – ICA Germany conference, October 1997)
This report was presented to Members of Parliament attending a reception in the Jubilee Room at the House of Commons on the 27th April 1999.
Contents of our Survey include:
- Demographics:
Age at first symptoms
Male/Female respondents
Duration of symptoms before diagnosis
Risk factors - Symptoms of Quality of Life:
Other symptoms & medical conditions
Affects on lifestyle, relationships, work
Pain levels & frequency - Costs:
GP visits, consultant visits, sickness leave