Back to list of Priority Setting Partnerships (formerly known as Working Partnerships)

Urinary Incontinence
A JLA Priority Setting Partnership

The James Lind Alliance Priority Setting Partnership on Urinary Incontinence was established in October 2006 and completed in November 2008. The project (initially referred to as a Working Partnership, then changed to Priority Setting Partnership) helped patients, carers and clinicians to work together to identify and then to prioritise important areas of uncertainty about the effectiveness of treatments for urinary incontinence. It is hoped that the recommendations of the Priority Setting Partnership will be taken into account in the commissioning of future research.

Urinary incontinence, defined as the “demonstrable involuntary loss of urine”, can occur at all ages and is associated with a wide variety of conditions. For some urinary incontinence is an occasional slight leakage from the bladder, for others it is a complete inability to control voiding. For a number of reasons, the prevalence of urinary incontinence is difficult to establish, but commonly cited figures for “regular” urinary incontinence are those resulting from a 1995 Royal College of Physicians study: 8.75% of women aged under 65, 15% of women aged over 65, 3% of men aged under 65 and 8.5% of men aged over 65. It has been estimated that 1-2% of adults experience bed wetting, and 5-10% of 5-14 year olds are affected by bed wetting, daytime wetting or soiling.

This is a clinical area which is affected at all levels by the taboo which surrounds incontinence so that there is poor public and professional awareness both of the condition itself and of services and treatments available. Crucially, the stigma associated with incontinence may mean that consumers may be less likely to express their concerns and priorities relating to treatments than in other disease areas. In this sense it is an area to which a systematic method of gathering, collating and prioritising clinician and consumer views and questions is particularly appropriate.

A protocol which informed the progress of the JLA Urinary Incontinence Priority Setting Partnership can be accessed by clicking on the following link: JLA WP UI Protocol [PDF 214kb]

Glossary of terms (PDF}

FOR A FULL LIST OF PARTICIPATING ORGANISATIONS WITHIN THE UI PRIORITY SETTING PARTNERSHIP - click here (PDF opens in a new window)

Reports and Articles related to the progress of the UI Priority Setting Partnership:

Article from the Multiple Sclerosis Trust - Priorities in the management of continence problems
Jenny Henderson, who represented the MS Trust, said, "The project took two years to fulfil, but I feel that the uncertainties that we have identified are the major ones, with several of them particularly relating to people with MS." To see the full article click the following link: http://www.mstrust.org.uk/news/article.jsp?id=3210

Report of the final priority setting meeting of the JLA Urinary Incontinence Priority Setting Partnership. The JLA Urinary Incontinence Priority Setting Partnership was established in 2006 to identify research uncertainties in the treatment of urinary incontinence, which were of importance to patients, carers and clinicians. A final workshop took place in November 2008 to turn a shortlist of 29 agreed treatment uncertainties into a prioritised list of 10, shared by patients, carers and clinicians, to be taken into account in the commissioning of future research. This report describes that process and the agreed next steps for the JLA and its partners. For a copy of the report, including the top 10 research uncertainties agreed by the Urinary Incontinence Priority Setting Partnership click here (PDF)

Evaluation of the Urinary Incontinence Priority Setting Partnership (PDF)

Report of the Urinary Incontinence Priority Setting Partnership meeting,18 March 2008. This report describes the meeting and examines the progress of the UI PSP in harvesting treatment uncertainties for prioritisation, and sets out actions for the future. For a copy of the report click here (PDF)

Press Release - InContact (Brian Buckley)
The project is being supported by over twenty leading patient and professional organisations. Incontact, the leading UK charity for people with bladder and bowel problems is one of the organisations supporting this important work. A simple questionnaire has been posted to its members and is also available on line at http://www.incontact.org/news-telling-researchers-what-to-research.html or http://www.mstrust.org.uk/information/clinical_uncertainties.jsp For full details of the press release click here (PDF)

Identifying and Harvesting Treatment Uncertainties
Letter to Urinary Incontinence Priority Setting Partnership - click here (PDF)
Identifying Uncertainties - click here (PDF)
Guidance notes - click here (PDF)

Urinary Continence Priority Setting Partnership (formerly known as Working Partnership) Awareness Meeting, 23rd May 2007 - To see report of the meeting click here (PDF)

Prioritising Research: Patients, Carers and Clinicians working together
Letter by Brian Buckley, published in the HSCNEWS issue 35, Feb 2007 (Page 56-57)

Barriers to effective care of incontinence - to see article click here (PDF)

Working together to identify research questions - to see article click here (PDF)

Buckley BS et al (2009) Reaching a consensus on research priorities in urinary incontinence. Nursing Times, online publication. Gaps in the evidence base in healthcare are common, and this is also the case for the management of urinary incontinence. The James Lind Alliance helped patients and clinicians to work together to identify and then prioritise gaps in the evidence base for managing this condition, producing a list of 10 research priorities. This article (PDF) outlines the process involved in reaching this consensus.