Work

Increasing Cystic Fibrosis Knowledge of Parents of Children Diagnosed With the Newborn Screening Program

Year: 2025

Type: article

Abstract: BACKGROUND: Cystic fibrosis (CF) is a life-threatening disease that requires extensive knowledge for effective management. This study aimed to assess the knowledge levels of parents of children diagnosed with CF through newborn screening (NBS), evaluate their experiences during the diagnostic process, and determine the impact of education on their CF knowledge. METHODS: This quasi-experimental study involved 47 parents of children aged 0-30 months diagnosed with CF through NBS at four CF centers in Istanbul, Turkey. Parents completed a questionnaire assessing their CF knowledge before and after receiving face-to-face education, informational brochures, and an online webinar. The questionnaire covered general CF features, lung health, sexual function and infertility, and gastrointestinal issues. RESULTS: The study revealed significant deficiencies in parental knowledge about CF and the NBS process. Only 25.5% of parents were informed about NBS prenatally, and 51.1% received information about CF when NBS results were positive. After educational intervention, correct response rates significantly increased for general characteristics (p = 0.003), sexual health (p < 0.001), lung health (p = 0.007), and overall knowledge (p < 0.001). Parents of children older than 12 months showed more pronounced improvement in knowledge across various sections compared to parents of younger children. CONCLUSION: The study highlights the need for a more robust educational framework to equip parents with comprehensive knowledge about CF. Improved communication strategies about NBS processes and repeated educational interventions are necessary to address knowledge gaps and enhance the quality of life for CF patients and their families.

Source: Pediatric Pulmonology

DOI: 10.1002/ppul.71392