246 Parental understanding of mutation class-specific treatments for CF and implications for their child's CF

Abstract

Objectives A new generation of drugs target CF mutation class, however psychosocial implications for families that currently can or cannot benefit, are largely unknown. This study explored the understanding and beliefs about these treatments in mothers of young children with CF. Methods Thematic analysis was carried out on semi-structured qualitative interviews conducted with 7 mothers of children with CF ( Results Mothers knew of ivacaftor though had limited understanding of how it works. All saw it as positive and those whose children could not take it expressed no resentment towards those who could. All knew something about their child's CF mutation, but knew little about drugs in development, expressing hope they would be of benefit, but also fear that companies would stop development if they thought it unprofitable, that treatments would not work, or not be funded by the NHS. Mothers managed uncertainty about future treatments by avoiding information, a coping strategy they developed post-diagnosis when feeling overloaded with information. They learned to ‘filter’ information based on relevance to their child's needs at that time. Those whose children cannot take ivacaftor decided not to find out more until it becomes actively relevant to their child. Conclusion All mothers had some knowledge of ivacaftor. Those not benefiting at the moment are hopeful for the future, yet fearful it will not happen and coping by avoiding further information. This may lead to parents being uninformed about key aspects of the future genetic basis of CF care.