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

IF 2.7 3区医学 Q1 PEDIATRICS Pediatric Pulmonology Pub Date : 2024-12-01 Epub Date: 2024-09-02 DOI:10.1002/ppul.27235

Merve Selcuk Balcı, Yasemin Gökdemir, Ela Erdem Eralp, Almala Pınar Ergenekon, Cansu Yılmaz Yegit, Mürüvvet 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, Bülent Karadag

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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.

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将 CF R.I.S.E 翻译程序翻译和改编为土耳其语后，评估患者的基线囊性纤维化知识水平。

背景：囊性纤维化（CF）患者的预期寿命有限，但目前医学的重大进步凸显了从儿科护理到成人护理的成功过渡计划的必要性。本项目的目标是在马尔马拉大学（MU）资源有限的CF中心引入CF R.I.S.E（责任、独立、自理、教育）过渡计划：方法：经 CF 基金会同意，该计划被改编并翻译成土耳其语。一个专家团队合作开发了针对患者和家属的教育材料。在翻译和实施 CF S.O.B.E 计划后，对 16-25 岁的患者进行了 11 次在线知识评估问卷 (KQA) 测试，以评估患者知识的缺乏情况：结果：CF R.I.S.E项目在6个月内成功实施。一项试点研究显示，随机抽取的患者对该计划给予了积极反馈，这表明该计划非常有效且易于理解。患者的平均年龄为（19.4 ± 2.9）岁，其中 42 人（52%）为女性。平均用力呼气量（FEV1pp）为 76.3 ± 23.2。患者中分别有 14 人（17.3%）和 4 人（4.9%）定植了绿脓杆菌和耐甲氧西林金黄色葡萄球菌（MRSA）。有 15 人（18.5%）正在接受调节剂治疗。对 81 名患者进行了 11 次知识评估问卷 (KAQ) 调查。对 KAQ 的正确回答率从 47.9% 到 68.3% 不等：土耳其 MU CF 中心实施了 CF S.O.B.E（土耳其语中的责任、自理、独立和教育）计划。该中心的目标是使该计划成为常规做法，并扩大与成人诊所的合作。未来的研究将评估该计划的长期影响以及在不同医疗环境中的适用性。最终目标是在全国范围内推广该计划的资源，促进结构化过渡实践。

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来源期刊

Pediatric Pulmonology 医学-呼吸系统

CiteScore

6.00

自引率

12.90%

发文量

468

审稿时长

3-8 weeks

期刊介绍： Pediatric Pulmonology (PPUL) is the foremost global journal studying the respiratory system in disease and in health as it develops from intrauterine life though adolescence to adulthood. Combining explicit and informative analysis of clinical as well as basic scientific research, PPUL provides a look at the many facets of respiratory system disorders in infants and children, ranging from pathological anatomy, developmental issues, and pathophysiology to infectious disease, asthma, cystic fibrosis, and airborne toxins. Focused attention is given to the reporting of diagnostic and therapeutic methods for neonates, preschool children, and adolescents, the enduring effects of childhood respiratory diseases, and newly described infectious diseases. PPUL concentrates on subject matters of crucial interest to specialists preparing for the Pediatric Subspecialty Examinations in the United States and other countries. With its attentive coverage and extensive clinical data, this journal is a principle source for pediatricians in practice and in training and a must have for all pediatric pulmonologists.