CF community needs clearer cross infection information: Survey

Patients, caregivers would like to know more about prevention, control

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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About every fourth member of the cystic fibrosis (CF) community feels they’re not provided clear information about cross infection and infection prevention and control, according to a survey conducted in 13 countries.

Many survey respondents, mostly girls and women, said they’d wash and disinfect their nebulizers more frequently if they were given information about the risks of infection and best practices for proper cleaning of devices.

The findings suggest there’s a need to communicate evidence-based guidance, policies, and guidelines in various ways, “so that the CF community can make informed choices … throughout their CF journey,” wrote researchers from Belfast City Hospital in the U.K.

Their study, “Attitudes to cross infection, nebuliser hygiene and antimicrobial resistance in people with cystic fibrosis: Results of an international survey,” was published in Infection, Disease & Health.

While anyone can carry an infection, people with CF are more likely to experience complications because their bodies produce a thick mucus that favors the growth of bacteria and other microbes. As mucus builds up, it can block the airways and make it harder to clear up the infection.

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Spreading of bacteria and other microbes can occur through cross infection from person to person or contaminated equipment at home or in healthcare or other settings.

To better understand the views of patients and their caregivers on cross infection, nebulizer hygiene, and antimicrobial resistance, the researchers surveyed 280 members of the CF community. The respondents ranged in age from 10 to 70-plus.

Most were patients themselves (45.7%) or parents of patients (43.9%). There were more female than male patients (76.1% vs. 21.4%), and nearly half (46.4%) lived in North America. For the majority (95.6%), information about cross infection and infection prevention and control was very important or slightly important.

However, 27.3% indicated they’re not given clear information. Those who were older than 50 were about twice as likely to note a lack of information as those in the 30-49 age group. The difference was even higher when compared with younger adults.

When asked about nebulizer hygiene, many respondents (77.3%), mostly girls and women, said they’d disinfect their nebulizers more frequently if they knew more about the risks of infection and best practices. A small percentage (7.2%) said they likely wouldn’t change their habits even if more information were provided.

“Respondents indicated five key areas for information improvement,” the researchers wrote. Those were evidence-based guidance, policies and guidelines, awareness through education, best practices, and delivery mechanisms, they said.

Because nebulizer hygiene is key to prevent infection, the researchers prepared a 2.5-minute educational video. Using evidence-based information about sources of contamination, types of contaminating microbes, and steam disinfection, the video explains why it’s important to clean a nebulizer.

A readability test showed that information from six CF charities was easier to understand than scientific abstracts, but still fell short of ideal readability level. For example, the American Medical Association and the National Institutes of Health suggest that “patient materials should be written at the sixth and eighth grade reading level, respectively,” the researchers wrote.

The respondents suggested evidence-based guidance, policies, and guidelines be delivered in various formats, such as leaflets, emails, or in person by nurses or doctors. They also voiced the need to interact with other people with CF, and to access information that’s not communicated “in a condescending manner,” the researchers wrote.