Uncertainty in making decisions about health care
A questionnaire published by the James Lind Alliance Working Partnership on Urinary Incontinence
Identifying important areas of uncertainty in the treatment or management of urinary incontinence
Every day patients, carers and clinicians have to make choices between different treatments or different methods of management for health problems. The choice made can have an important impact on the life of the person involved. Therefore it is best if information based on up to date research is available which patients, carers and clinicians can discuss together to help them make the right choice.
But sometimes not enough up to date information exists and as a result patients, carers and clinicians are faced with uncertainty regarding the best choice to make. The James Lind Alliance calls these situations 'clinical uncertainties' - questions and choices in the treatment or management of bladder control problems which cannot currently be informed by up to date information based on research evidence.
The Alliance wants to identify bladder problems and treatments where there is not enough information available to help people come to a decision. When this has been done so, the information can be used to ensure that future research addresses these issues. This will be a great help for similar people facing the same decisions in the future.
What can be done about this?
The James Lind Alliance Working Partnership on Urinary Incontinence is a partnership of organisations representing patients, carers and clinicians.
Its aim is for patients, carers and clinicians to work together to:
- identify important areas of 'clinical uncertainty';
- assemble and publish these in the Database of Uncertainties about the Effects of Treatments (DUETS);
- decide which of these uncertainties are most important.
A list of the most important uncertainties will then be published and provided to organisations that fund research, to promote the search for the evidence needed to make sure that it will become easier to make well informed decisions about treatment.
Whether you are a patient, a carer or a clinician, you can help to ensure future research addresses important areas of uncertainty by using this questionnaire to tell us about uncertainties that have affected you.
How to tell us about 'clinical uncertainties' that have affected you
If you or someone you care for is affected by bladder control problems and have been faced with uncertainty when making choices about health care, you can help us by telling us what the uncertainty was. Perhaps you had to choose between different medications, types of surgery or ways of managing the problem, but health care professionals or patient organisations have not been able to provide you with information about which is likely to be best.
If you are a health care professional working with people affected by bladder control problems, the Aliance would like to hear whether there is a particular clinical decision where the lack of good evidence regularly affects your practice.
You may have experienced several areas of uncertainty. Please print off a copy of the questionnaire for each one that has affected your health care choices, and answer the three questions.
After answering the questions, return the completed form to:
Clinical Uncertainties
MS Trust
Spirella Building
Bridge Road
Letchworth Garden City
SG6 4ET
Forms will be gathered and forwarded to the James Lind Alliance.
The James Lind Alliance is supported by the Medical Research Council and the Department of Health.