Assessment of patients' baseline cystic fibrosis knowledge levels following translation and adaptation of the CF R.I.S.E translation program into Turkish-Reference-Cited by-同舟云学术

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

Published:2024-09-02 Issue: Volume: Page:
ISSN:8755-6863
Container-title:Pediatric Pulmonology
language:en
Short-container-title:Pediatric Pulmonology

Author:

Balcı Merve Selcuk¹^ORCID,Gökdemir Yasemin¹,Eralp Ela Erdem¹,Ergenekon Almala Pınar¹^ORCID,Yegit Cansu Yılmaz¹^ORCID,Yanaz Mürüvvet¹^ORCID,Gulieva Aynur¹,Kalyoncu Mine¹^ORCID,Karabulut Seyda¹,Cakar Neval Metin¹,Uzunoglu Burcu²,Tastan Gamze²,Kocaman Damla³,Coskun Ozge Kenis⁴^ORCID,Gorgun Ilknur⁵,Randall Messier R.⁶,Mertz Pamela⁶,Karakoc Fazilet¹,Karadag Bülent¹

Affiliation:

1. Division of Pediatric Pulmonology School of Medicine, Marmara University Istanbul Turkey

2. Selim Cöremen Cystic Fibrosis Center Marmara University, Pendik Education and Training Hospital Istanbul Turkey

3. Nutrition and Dietetics Marmara University, Pendik Education and Training Hospital Istanbul Turkey

4. Department of Physical Medicine and Rehabilitation School of Medicine, Marmara University Istanbul Turkey

5. Turkish Cystic Fibrosis Association (KIFDER) Istanbul Turkey

6. Cystic Fibrosis Foundation Virtual Improvement Program‐F7 Team Bethesda USA

Abstract

AbstractBackgroundCystic 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).MethodsThe 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.ResultsThe 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%.ConclusionMU 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.

Publisher

Wiley

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1002/ppul.27235

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