Listening and learning: catheter users explain their needs

A shocking 70% of people who use catheters over the long term suffer distressing complications.¹,² Many contract infections, which can sometimes become life-threatening.³ Yet the basic design of catheters has hardly changed in 50 years. A lack of data on users' experiences is hindering product development. Researchers aim to fill the information gap, in the hope of improving the lives of catheter users.

What's the problem and who does it affect?

Catheters can make life miserable

Urinary incontinence may be a taboo subject, but it’s actually a very common and distressing problem. It affects more than a quarter of people with physical disabilities, as well as a similar proportion of people over 75 (4,5). Many sufferers are forced to rely on catheters to control their bladder.

Long-term catheter use is highly problematic. Catheters are uncomfortable and burdensome. The bags that collect the urine can be heavy, smelly and difficult to disguise under clothing, making many users feel undignified. People with complex disabilities can find things like fiddly outlet taps on the bags too difficult to manage, which increases their dependency on carers.

More than 70% of users suffer complications (1,2) Many contract infections, which can sometimes become life-threatening (3). Up to half find their catheter gets blocked, which can cause painful retention of urine, and emergency visits to a nurse to clear the blockage can be exhausting and traumatic (1). Sadly, incontinence can be a major reason for someone moving to institutionalised care.

We desperately need to find better ways to manage incontinence. But a lack of firm data on catheter users’ experiences, and the associated costs, is hampering product development.

What is the project trying to achieve?

Catheter users explain their experiences

The researchers working on this project are conducting some long overdue, systematic research into the use of catheters. They are building a database of detailed information by drawing on the experiences of several hundred catheter users, and their carers, via interviews and questionnaires. Clinicians and product developers will also contribute through focus groups.

Researchers are developing two sophisticated questionnaires. The first, called a ‘needs assessment tool’, will measure users’ needs and abilities. It will cover things like cognitive ability, mobility and manual dexterity, as well as the level of dependency on carers. The second questionnaire will focus on how catheters affect the quality of life of users.

Researchers are also exploring the costs of long-term catheter use – to healthcare and social services, and to users and their carers, as well as any indirect costs resulting, for example, from carers not being able to work.

What are the researchers' credentials?

The project leader, Professor Kathryn Getliffe, began her clinical career in community nursing, giving her very real insights into catheter-related problems. Some of her earliest research, 15 years ago, was with patients who suffered recurrent blockage of their catheters, and she has continued to work on the problems associated with incontinence.

The researchers in the project team have an international reputation in the clinical evaluation of continence products such as catheters, drainage bags, absorbent pads and so on, as well as a strong track record in trying to improve the products available to patients. Their multidisciplinary expertise, in disability, rehabilitation and continence care, gives them the perfect combination of skills.

Who stands to benefit from this research and how?

Making better use of existing catheters

Everyone who is using a catheter over the long term stands to benefit from this project. Initially, researchers hope their work will ensure that people are getting the most out of the catheters that are already available – that everyone is receiving the best type of care and support for them. The needs assessment tool will be invaluable to healthcare professionals as they evaluate the individual needs of each catheter user.

Developing innovative new products

This study will also provide the firm data that product developers need to design better ways of controlling the bladder. Catheter users urgently need new, user-friendly products that cause fewer complications, as well as being easier to manage, more comfortable and less embarrassing. The quality-of-life questionnaire and data on costs will enable developers to evaluate the benefits of new products.

Researchers hope their work will lead to renewed interest and enthusiasm for an area of medicine that has been seriously neglected.

References

• 1. Kohler-Ockmore J, Feneley RCL. Long-term catheterisation of the bladder: prevalence and morbidity. British Journal of Urology 1996;77:347-351.
• 2. Kunin CM, Douthitt S, Dancing J, Anderson J, Moeschberger M. The association between the use of urinary catheters and morbidity and mortality among elderly patients in nursing homes. American Journal of Epidemiology 1992;135:291-301.
• 3. Cottenden A, Bliss D, Fader M, Getliffe K, Herrera H, Paterson J, Szoni G, Wilde Ml (2005). Management with Continence Products. In Abrams P, Cardozo L, Khoury S and Wein A (eds). Incontinence vol 1 Chapter 4. Health Publication Ltd, Paris.
• 4. Perry S, Shaw C, Assassa P, Dallosso H, Williams K, Brittain KR, Mensah F, Smith N, Clarke M, Jagger C, Mayne C, Castleden CM, Jones J, McGrother C. An epidemiological study to establish the prevalence of urinary symptoms and felt need in the community; the Leicestershire MRC Incontinence Study. Journal of Public Health Medicine 2000;22(3):427-434.
• 5. Department of Health. 'Good practice in continence services.' Department of Health, London (2000).