Faecal incontinence (FI) is a common condition affecting about 67 million people in Europe. Many of these people may be incontinent because of an injury – often from childbirth. AMELIE’s research into regenerative medicine and cell therapy aims to help these people. As part of the AMELIE project, we used a survey to find out what people think about FI and regenerative medicine in different European countries.
Designing the survey
The survey was designed and shared with the help of UK and European charities, including the World Federation for Incontinence and Pelvic Problems (WFIPP) and Associació per la Incontinència Anal (ASIA). This was led by AMELIE partner Bowel Research UK (BRUK). The survey was made available in Danish, German, French, Italian, Spanish, Portuguese and Dutch. It was officially released on the 15th November 2021. BRUK also connected with the charity MASIC who represent women with obstetric injuries (injuries during childbirth). MASIC publicised the survey through their network. The survey remained open until the 21st February 2022.
The survey was divided into four sections:
- About You
- Views on and awareness of incontinence
- Views on and awareness of current treatments
- Views on the acceptability of new cell therapy treatments for incontinence
The results were analysed using information collected in the ‘about you’ section; specifically gender, age and ethnicity.
Results
In total, we had 379 responses. 287 of these were female, with 53% aged between 41 and 65. We found that women were more likely to say that urinary issues were a more serious public health issue than faecal. Women were also more likely to think that being incontinent was worse than being in moderate pain all the time. Women were also far more aware of different health groups and charities, with 29% saying there were aware of very aware.
Different age groups had different views about incontinence. For example, 29% of 41 to 65-year-olds thought that being incontinent was worse than not getting out of bed. 31% of people over 66 thought that incontinence was worse than needing a feeding tube and 26% thought that it was worse than needing 24/7 care.
More women were aware of pelvic floor issues (73% compared to 54% of men) and the current treatments available. People over 66 were much less likely to know about different treatments, particularly those that are available without needing to consult a doctor.
Younger people were more likely to have heard of the terms ‘regenerative medicine’ and ‘stem cell therapy’. White British people were far less likely to have heard of ‘tissue engineering’ than those from other backgrounds. Trialling cell therapy as a possible treatment for faecal incontinence was most popular amongst 41 to 65-year-olds.
Our findings
Results from the survey confirm that the public see FI is as a serious public health problem. Data from the study further shows that people of all age groups fear being incontinent. Though people are aware of the pelvic floor, there is little pubic understanding about different therapies available; particularly regenerative medicine.
We therefore think that there is a need for greater public awareness of new treatments that are being investigated for treating incontinence. Members of the public are enthusiastic about new therapies to restore continence but need to be told more about the benefits and risks of unconventional treatments. AMELIE will use this information to raise awareness about incontinence and to help with recruitment to the clinical trial.