The long-term consequences of childbirth on urinary and faecal incontinence, prolapse and sexual dysfunction (collectively, pelvic floor dysfunction) are poorly understood and under-researched. We have followed up a cohort of about 8000 women whom we first recruited in 1993-1994, three months after they gave birth. Twelve years later in 2006, a new follow up survey explored the natural history of pelvic floor function and related it to antecedent obstetric and other factors (particularly caesarean section and forceps delivery) in order to elucidate the prevalence and epidemiology of long-term incontinence and prolapse. It is intended to maintain this cohort of women in the long term (for at least 30 years) so that further longitudinal research into the assessment of pelvic floor dysfunction can be carried out. The data can also be used to obtain prevalence information which will inform estimates of future need for treatment and research amongst women with pelvic floor dysfunction. The findings will be used to identify ways of improving women's health after childbirth. The women examined at 12 years for evidence of early prolapse were invited to enter a new RCT to find out if pelvic floor muscle training could prevent the progression of prolapse symptoms and signs. This new trial, PrevProl, was also funded by WellBeing of Women, and has completed 2 years’ follow up. Three and four year follow up is planned as part of the ProLong 20 year follow up. A new follow up study, ProLong20+, will be inviting the group of women who were originally recruited in the United Kingdom (UK) to take part again 25 years after the first study. The findings from this study will be used to shed light on how pelvic floor problems change over a woman’s lifetime, particularly around the menopause. We hope this will help us identify ways of improving women's health, for instance, by finding out how common these problems are, what treatment women might need, and what further research could be done. Obtaining up-to-date contact details from participants through the NHS As it has been 12 years since the last survey we will be contacting the NHS to request access to up-to-date name and address information before sending out study invitation letters. This will ensure that we give as many women as possible the chance to take part. We will obtain permission from the Public Benefit and Privacy Panel for Health and Social Care (PBPP) in Scotland and the Confidentiality Advisory Group (CAG) in England to do this. We will not be requesting any information for participants who have previously withdrawn or opted out of future contact from the study. This process will involve sending Identifiable information including name, date of birth and NHS or CHI number to the NHS in order to identify who we are wishing to access data for. The information we send is only needed to match study participants to the correct records that the NHS already has through GPs, hospitals etc.; we are not providing any new information to them. The NHS will send us up-to-date name and address information for study participants who are still living in the United Kingdom. No information will be provided by the NHS for any participants who have registered with the National Opt Out programme (https://digital.nhs.uk/services/national-data-opt-out-programme/). ProLong20 Participant Notification v1.1 18 Jan 19.docx
Contacts
- Cathryn Glazener; c.glazener@abdn.ac.uk