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Women with cystic fibrosis "too embarrassed" to seek help for incontinence

June 20, 2001

A study in this week's BMJ finds that over two-thirds of women with the chest disease cystic fibrosis suffer urinary incontinence, yet are reluctant to seek help. Given that incontinence can affect a patient's ability to perform essential daily treatment procedures, addressing this problem should become part of the routine management of cystic fibrosis, report the authors.

Researchers at the Adult Cystic Fibrosis Unit in Manchester invited women attending the clinic to complete an anonymous questionnaire. The questions related to the severity, causes, and physical or social impact of leakage when the chest was "good" or "bad".

Of 75 questionnaires completed, 68% of women reported leakage of urine in the previous 12 months. They reported coughing, sneezing, laughing and airway clearance as the major causes of leakage, which was worse when the chest was "bad." Eight women reported leakage affecting their ability to perform airway clearance. This is particularly worrying, say the authors, as cystic fibrosis requires lifelong daily treatment by airway clearance to assess and manage the impact of the disease on the lungs.

More than a quarter of women were severely distressed by their incontinence, and 20% had sought help previously. Reasons given for not seeking help included "not as serious as my chest disease" and "too embarrassed." A wish for treatment was expressed by 35% of women.

The low number of women who wanted help for their reported leakage is reason for concern, say the authors. A practical and sensitive approach needs to be developed to evaluate this little recognised condition in women who already have the burden of cystic fibrosis, they conclude.

British Medical Journal (BMJ)