Research Priorities in Urinary Incontinence: Results from Citizens' Juries
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Australia - New Zealand
Why was it conducted at all?
In research into urinary incontinence, there are many studies comparing a drug with placebo, but many fewer comparing different drugs or drugs or surgery with conservative therapies. Studies also tend towards the explanatory (testing what happens in ideal circumstances) end of the spectrum rather than the pragmatic (testing what happens in the real world), which may limit their generalisability. There is clearly a movement for more involvement of consumers in deciding about many aspects of research. Consumer groups exist whose purpose is to improve the design and conduct of randomised trials, and consumer involvement is seen as extremely important.
What was the objective?
to elicit research ideas, priorities and outcome measures from women who suffer from urinary incontinence
What was the outcome?
a list of 25 research topics
How long did the research prioritization take?
No information provided.
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: workshop designed as citizens' juries: input by experts, followed by discussion: juries asked to deliberate on the question: What can researchers study to make your life better?, with the supplementary question of: What should we measure to see if your life is better?, participants were divided into two groups depending on whether stress urinary incontinence (SUI) or urge urinary incontinence (UUI) was the predominant and most bothersome symptom, whiteboards and flipcharts were used to keep track of discussion and ideas, flipchart data used to derive categories of research ideas, participants then asked to rate each idea
Which stakeholders took part?
Women living in the community with urinary incontinence. 28 participants: 14 women with stress urinary incontinence (SUI) and 14 women with urge urinary incontinence (UUI).
How were stakeholders recruited?
Responders to public advertisements in Dunedin, New Zealand, were purposively selected. Women were recruited by means of advertisements placed in the local community newspaper asking for women with bladder problems, which caused them to leak urine, to contact us by phone. Eligible women were those with self-reported urine leakage and no other important co-morbidities, such as diabetes or neurological conditions. Participants were divided into two groups depending on whether stress urinary incontinence (SUI) or urge urinary incontinence (UUI) was the predominant and most bothersome symptom. Fourteen women from each group were purposively selected. More than 100 women replied to the advertisement. The 14 women selected for each jury covered a wide range in terms of age, time with the problem and severity of the problem.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.