Related Experiment Video

Updated: Jan 11, 2026

Implementation of Non-invasive Point of Care Transient Elastography for Evaluation of Liver Disease in Pediatric Populations with Cystic Fibrosis
05:56

Implementation of Non-invasive Point of Care Transient Elastography for Evaluation of Liver Disease in Pediatric Populations with Cystic Fibrosis

Published on: August 29, 2025

419

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

Mine Yüksel Kalyoncu1, Neval Metin Çakar2, Hüseyin Arslan3

  • 1Department of Pediatric Pulmonology, Dr Lutfi Kirdar City Hospital, Istanbul, Turkey.

Pediatric Pulmonology
|November 19, 2025
PubMed

Insights

Parental knowledge about cystic fibrosis (CF) and newborn screening (NBS) was low but significantly improved after educational interventions. Enhanced education is crucial for families managing CF.

Area of Science:

  • Pediatrics
  • Genetics
  • Public Health

Background:

  • Cystic Fibrosis (CF) is a serious genetic disorder requiring extensive parental knowledge for management.
  • Newborn screening (NBS) is critical for early CF diagnosis, but parental awareness and understanding can be limited.

Purpose of the Study:

  • To assess parental knowledge of CF and NBS.
  • To evaluate parental experiences during the CF diagnostic process.
  • To determine the effectiveness of an educational intervention on parental CF knowledge.

Main Methods:

  • A quasi-experimental study involving 47 parents of infants and young children diagnosed with CF via NBS.
  • Knowledge assessment using questionnaires before and after educational interventions (face-to-face, brochures, webinar).
  • Questionnaire covered general CF, lung, sexual, and gastrointestinal aspects.

Main Results:

  • Significant pre-intervention knowledge gaps were identified regarding CF and NBS.
  • Post-intervention, parental knowledge significantly improved across general characteristics, sexual health, lung health, and overall understanding (p < 0.001).
  • Parents of children over 12 months showed greater knowledge improvement.

Conclusions:

  • A comprehensive educational framework is essential for parents of children with CF.
  • Improved communication about NBS and repeated educational interventions are vital to address knowledge deficits.
  • Enhancing parental knowledge can improve the quality of life for CF patients and their families.
Abstract

Keywords:
cystic fibrosis (CF)knowledge assessmentnewborn screening (NBS)parental education

More Related Videos

Generation of Human Nasal Epithelial Cell Spheroids for Individualized Cystic Fibrosis Transmembrane Conductance Regulator Study08:00

Generation of Human Nasal Epithelial Cell Spheroids for Individualized Cystic Fibrosis Transmembrane Conductance Regulator Study

Published on: April 11, 2018

11.1K
Growing a Cystic Fibrosis-Relevant Polymicrobial Biofilm to Probe Community Phenotypes03:53

Growing a Cystic Fibrosis-Relevant Polymicrobial Biofilm to Probe Community Phenotypes

Published on: April 19, 2024

1.0K

Related Concept Videos

Cystic Fibrosis: Pathogenesis01:23

Cystic Fibrosis: Pathogenesis

Cystic fibrosis (CF), an autosomal recessive disorder, significantly affects the function of exocrine glands. This genetically inherited disease is characterized by the production of thick and sticky mucus, which can severely affect various organs and systems in the body.
CF is primarily caused by a genetic mutation in a chromosome 7 gene coding for the cystic fibrosis transmembrane conductance regulator (CFTR) protein. The most common gene mutation leading to CF is the ΔF508 mutation,...
687
Cystic Fibrosis: Management01:24

Cystic Fibrosis: Management

Cystic fibrosis (CF) is an autosomal recessive disorder that predominantly affects individuals of Northern European descent, occurring at a rate of 1 in 3500. It is caused by a genetic mutation in a gene on chromosome 7, most commonly the ΔF508 mutation, that codes for the cystic fibrosis transmembrane conductance regulator (CFTR) protein. This results in thicker mucus secretions and obstruction pathologies in multiple organs, including the lungs and sinuses.
Sinus disease and chronic...
456
Pharmacokinetics in Pediatric Patients: Overview and Drug Absorption01:23

Pharmacokinetics in Pediatric Patients: Overview and Drug Absorption

Understanding the physiological differences in the pediatric population is crucial for effective pharmacotherapy. Neonates, infants, and children exhibit significant variations in gastric pH, gastric emptying time, intestinal transit time, and biliary function. These variations profoundly affect oral drug absorption, necessitating a nuanced approach to pediatric dosing.Neonates present with a unique physiological profile, having a gastric pH greater than 4 and faster and more irregular gastric...
232