45 Decision making by young adults with CF about risk of patient–patient and environmental acquisition of infection

Abstract

Objective Our previous study qualitatively explored decision-making about exposure to potential risk of infection in young people with CF, highlighting the role of competing social demands and gaps in knowledge. The current study extended this, exploring judgements about risk in a national sample. Methods People with CF were invited to complete an online survey via social media forums hosted by the UK CF Trust. This focused on participants' decisions in 4 hypothetical risk scenarios, beliefs underlying decisions, and perceived importance of different sources of information. Results 75 respondents; mean age 24; 65% female. Many were less aware of environmental risks such as cleaning stables (72% saw this as medium-no risk), but better informed about person-person risk (only 13% would meet another person with CF, 3% if they have cepacia), though even here there were gaps in knowledge (32% did not know what cepacia was). Decisions were responsive to available risk information: 45% would not visit a friend on a ward where there was MRSA, and this rose to 73% if the friend had MRSA. Uncertainty about their own infection status was also important. The most trusted sources of advice were verbal and written information from the team, followed by the CF Trust and the internet. Conclusion Though this sample was CF Trust forum users and arguably more active than most with CF, knowledge still varied widely. Young people with CF make active decisions about exposure to risk of infection, but these are not always based on reliable knowledge, particularly of environmental risk. This is an ongoing study. Full results and thematic analyses of narrative responses will be presented.