Exploring pelvic organ symptoms in people with neurological conditions
Research type
Research Study
Full title
Exploring and understanding the range of pelvic organ symptoms experienced by people with neurological conditions
IRAS ID
333242
Contact name
Marcus Drake
Contact email
Sponsor organisation
Research and Integrity Team
Duration of Study in the UK
1 years, 6 months, 24 days
Research summary
In the UK, five million women experience pelvic floor dysfunction and up to 61% of males experience lower urinary tract symptoms, erectile and/or bowel dysfunction (Wu et al., 2014; Knol-de Vries & Blanker 2022). Treatment costs the NHS £233 million annually, with an additional £178 million spent by patients on self-management (CSP, 2014). Neurological disorders increase prevalence of these problems considerably and with one in six people in the UK living with a neurological condition (The Neurological Alliance, 2022), neurological pelvic floor dysfunction has a significant burden on healthcare systems. For example, 75% of individuals with multiple sclerosis (MS) experience bladder problems, 32% faecal incontinence and 49% constipation (Lin et al., 2019).
Patient reported outcome measures (PROM) are questionnaires which enable patients to identify severity of their symptoms and the degree of impact on their quality of life (Weldring and Smith, 2013). At present however, there is no single, comprehensive patient reported outcome measure (PROM) which clearly reports all the potential pelvic floor symptoms, including bladder, bowel and genital changes, and quality of life impact that people with neurological conditions may experience
This research hopes to identify all the relevant bladder, bowel, and genital symptoms experienced by people with neurological conditions to develop a draft data item list for inclusion within a patient reported outcome measure. This aims to improve the assessment and understanding of the mechanisms behind the patient’s condition, to guide treatment and assess for change/progression in this population. This information will be gathered in a one-off, one hour semi-structured interview either in-person or online with a maximum of 40 people. Those included will be over 18, can read and write English, live with a neurological condition and experience pelvic organ problems. It will also involve discussions with patient and clinician panels.REC name
London - Fulham Research Ethics Committee
REC reference
24/LO/0399
Date of REC Opinion
22 Jul 2024
REC opinion
Further Information Favourable Opinion