Background: Chronic infection with Pseudomonas aeruginosa (PA) is associated with an accelerated decline of lung function in patients with cystic fibrosis (CF). Precautions to avoid contact with PA from the environment have been recommended by caregivers and are being carried out by many families with CF children. The present study was conducted to portray the spectrum of hygienic measures and to evaluate the restrictions and impact caused by these measures.
Subjects and methods: In a multi-centre survey, parents of children below 13 years of age responded to mailed questionnaires. The items covered parental knowledge of PA, information provided by caregivers, the parents' feelings and thoughts about PA infection, and measures taken in daily life to prevent a possible contact with PA in the environment.
Results: 130 parents from 10 CF centres responded to the questionnaire (63% response rate). 76% of the respective children had always been PA negative. Most parents displayed erroneous beliefs regarding PA infection (mean: 3.5 correct replies to 9 questions). Families performed a mean of 11 different hygienic measures, e.g. they prevented their child from being the first person to use the bathroom in the morning (72%) or from bathing in gravel pits and standing water (52%). The majority of parents felt markedly (44%) or somewhat (44%) stressed that their child might acquire PA, and many parents felt markedly (16%) or somewhat (43%) restricted and stressed by the hygienic measures. Less stressed parents tended to have more knowledge and undertook fewer measures.
Conclusion: When informing and teaching parents on the nature of PA infection, caregivers should provide clear recommendations on reasonable actions to be taken. Also, physicians should anticipate and adequately respond to parental fears and misconceptions.