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

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.