Implementation of Cystic Fibrosis Responsibility, Independence, Self-Care, Education Program Enhances Cystic Fibrosis Knowledge in Limited Resource Country: Results From a Randomized Controlled Trial

Overview

Journal Pediatr Pulmonol

Date 2025 Feb 3

PMID 39898696

Authors

Merve Selcuk Balci

Yasemin Gokdemir

Ela Erdem Eralp

Almala Pinar Ergenekon

Cansu Yilmaz Yegit

Muruvvet Yanaz

Aynur Gulieva

Mine Kalyoncu

Seyda Karabulut

Neval Metin Cakar

Burcu Uzunoglu

Gamze Tastan

Damla Kocaman

Ozge Kenis Coskun

Ilknur Gorgun

Randall Messier

Pamela Mertz

Fazilet Karakoc

Bulent Karadag

Affiliations

Soon will be listed here.

Abstract

Background: CF R.I.S.E is a program that helps people with Cystic Fibrosis (pwCF) transition from pediatric to adult care. In 2022, we adapted it to CF S.O.B.E in Turkish during a training session. This project aims to present the results of the CF S.O.B.E program.

Methods: This study included 81 pwCF aged 16-25, divided into two groups: the standard CF S.O.B.E. group (n = 39) and the modified group (n = 42). The standard group received face-to-face education. Both groups participated in online training sessions and received written materials. The knowledge levels were evaluated with Knowledge Assessment Questionnaires (KAQ).

Results: The standard group showed higher post-training scores in "Lung Health and Airway Clearance" and "Equipment Maintenance and Infection Control" (p = 0.014 and 0.002). Modified group showed improvements in all KAQs except "Lung Health and Airway Clearance", "CF-related Liver Disease," "Pancreatic Insufficiency and Nutrition," and "Male Sexual Health." Regarding Pancreatic Insufficiency & Nutrition and CF-related Diabetes, individuals with these conditions demonstrated higher pretest scores than those without these conditions (p = 0.01 and 0.002, respectively). Both groups and their parents reported high satisfaction, and healthcare providers endorsed the program's effectiveness.

Conclusion: Our study demonstrated the CF S.O.B.E program's success in enhancing knowledge, disease management skills, and self-confidence among pwCF. While the modified CF S.O.B.E program may be suitable for resource-limited centers, the priority should be to implement the standard program due to its superior outcomes in self-confidence and disease management. This study lays the foundation for incorporating CF S.O.B.E as a standard practice and evaluating its long-term clinical impact.

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