ArticleBMJ open respiratory research2025
Qualitative study exploring the views and perceptions of parents/carers of young children with CF regarding the introduction of CFTR modulator therapy (The REVEAL study; PaRents pErspectiVEs of KAftrio in chiLdren aged 2-5).
Article in BMJ open respiratory research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Who cites it
1 citing paper in PubMed.
- Mental health, sleep, and quality of life following CFTR modulator therapy: a longitudinal study of children with cystic fibrosis and caregivers.European journal of pediatrics · 2026Observational
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCystic fibrosis (CF) is associated with a historically high treatment burden which causes anxiety and exhaustion for parents of children with CF, especially in the early years of a child's life. Recently, a new medication, elexacaftor/tezacaftor/ivacaftor (ETI), has become available to some people with CF, which has had a significant impact on the quality of life of older children and adults. This medication will soon be available for children ages 2-5 in the UK. This study investigated parents' perspectives before their children could start ETI.
method10 parents of young children with CF participated in semistructured online focus groups. The data were analysed using thematic analysis to identify key themes.
resultsThree reviewers identified four main themes: (1) The 'roller coaster' of parental emotions: Shock, hope, uncertainty and anticipation, (2) The dark side of the unknown, side effects and burden of decision making, (3) The value of simple pleasures in a life with CF; treatment burden, normality, future, family life and (4) Reforming clinical care in the new era of CF care; support, communication and the future.
conclusionParents experience a range of emotions from the day of diagnosis. While ETI brings hope and positivity, parents are concerned about the medication's safety. Parents have clear hopes and wishes for their child's future and reflect on the need for clinicians to consider reforming clinical care in the new era of CF for those eligible for new therapies.
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