Assessment of Patients' Baseline Cystic Fibrosis Knowledge Levels Following Translation and Adaptation of the CF R.I.S.E Translation Program into Turkish

Overview

Journal Pediatr Pulmonol

Specialties Pediatrics
Pulmonary Medicine

Date 2024 Sep 2

PMID 39221873

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

R Randall Messier

Pamela Mertz

Fazilet Karakoc

Bulent Karadag

Affiliations

Soon will be listed here.

Abstract

Background: Cystic fibrosis (CF) patients have a limited life expectancy, but significant medical advances now highlight the need for successful transition programs from pediatric to adult care. The goal of this project was to introduce the transition program CF R.I.S.E (Responsibility. Independence. Self-care. Education.) to a CF center with limited resources at Marmara University (MU).

Methods: The program was adapted and translated into Turkish with the CF Foundation's permission. A team of experts collaborated to develop educational materials for patients and families. After translation and implementation of the CF S.O.B.E program, 11 Knowledge Assessment Questionnaire (KQA) tests were administered online to the patients aged between 16 and 25 years to assess the lack of patient knowledge.

Results: The CF R.I.S.E program was successfully implemented within 6 months. A pilot study showed positive feedback from randomly selected patients, indicating the program's effectiveness and understandability. The mean age of the patients was 19.4 ± 2.9 years, and 42 (52%) were female. The mean forced expiratory volume (FEV1pp) was 76.3 ± 23.2. Fourteen (17.3%) and 4 (4.9%) of the patients colonized with Pseudomonas aeruginosa and Methicillin-resistant Staphylococcus aureus (MRSA), respectively. Fifteen (18.5%) were on modulator therapy. Eleven Knowledge Assessment Questionnaires (KAQ) surveys were administered to 81 patients. The percentage of correct responses to the KAQs ranged from 47.9% to 68.3%.

Conclusion: MU CF Center in Turkey implemented the CF S.O.B.E (Responsibility, Self-care, Independence, and Education in Turkish) program. The center aims to make the program a regular practice and expand collaboration with adult clinics. Future studies will assess its long-term impact and applicability in different health settings. The final goal is to disseminate the program's resources and promote structured transition practices across the country.

Citing Articles

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

Selcuk Balci M, Gokdemir Y, Erdem Eralp E, Ergenekon A, Yilmaz Yegit C, Yanaz M Pediatr Pulmonol. 2025; 60(2):e27506.

PMID: 39898696 PMC: 11789547. DOI: 10.1002/ppul.27506.

A Global Perspective on Transition Models for Pediatric to Adult Cystic Fibrosis Care: What Has Been Made So Far?.

Poamaneagra S, Plesca D, Tataranu E, Marginean O, Nemtoi A, Mihai C J Clin Med. 2024; 13(23).

PMID: 39685886 PMC: 11642410. DOI: 10.3390/jcm13237428.

Assessment of patients' baseline cystic fibrosis knowledge levels following translation and adaptation of the CF R.I.S.E translation program into Turkish.

Selcuk Balci M, Gokdemir Y, Erdem Eralp E, Ergenekon A, Yilmaz Yegit C, Yanaz M Pediatr Pulmonol. 2024; 59(12):3483-3490.

PMID: 39221873 PMC: 11601002. DOI: 10.1002/ppul.27235.

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