Patients, Parents Fearful of Initial Bacterial Lung Infection, Survey Finds

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Cystic fibrosis survey

The emotional impact of an initial Pseudomonas aeruginosa (PA) respiratory infection on cystic fibrosis (CF) patients and those close to them is considerable, and it can lead them to adopt preventive measures that may be ineffectual and intrusive, researchers have found.

For the study, “Perception of first respiratory infection with Pseudomonas aeruginosa by people with cystic fibrosis and those close to them: an online qualitative study,” published in the journal BMJ Open, 393 CF patients and their parents were surveyed online about their perceptions of initial PA infections. Forty-two percent of the respondents reported experiencing a PA infection.

Fear was the dominant emotion expressed by many participants (38.7%). (PA infections can be common in CF, once established in a patient’s airways, are difficult to eliminate.)

“My experience in relation to lung function was insignificant, however, the psychological effect was all-consuming,” one patient said. “I even had to take time off work to get my head around it. The magnitude & significance was just too scary!”

The initial infection is “a slap in the face that CF is real,” a parent said.

For some families, the treatment itself was the stressor. Said one parent: “Now J needs nebs, our day is filled with resistance, arguing and tension because it’s another thing he doesn’t want to do.”

Knowledge about PA seemed to be a double-edged sword. Those with little knowledge of it reported feeling comforted upon learning it is treatable. Those who knew about the infection generally were fearful, the researchers found, and that led them to take unnecessary avoidance measures, such as excessive cleaning or limiting a child’s activities.

“My son aged 7 is paranoid about it and misses out in so much activity for fear of getting it,” a parent said.

Participants were asked, “How important do you think it is to develop more effective ways to deal with P. aeruginosa?” and were given a five-step scale, ranging from “totally unimportant” to “top priority/urgent,” to answer the question. Eighty percent said it is a top priority.

Based on survey responses, the researchers concluded that patient and family fears could be alleviated by healthcare professionals providing better information about how PA might be acquired and treated.

“Our data indicate that first acquisition of PA marks a turning point in the relationship with CF for many patients and parents. CF teams should therefore ensure that sufficient time is available for discussion, when a new infection occurs, as well as providing clear information about treatment and the likelihood of successful eradication,” the team wrote.