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Assessment of patients' baseline cystic fibrosis knowledge levels following translation and adaptation of the CF R.I.S.E translation program into Turkish.
Balci, Merve Selcuk; Gökdemir, Yasemin; Eralp, Ela Erdem; Ergenekon, Almala Pinar; Yegit, Cansu Yilmaz; Yanaz, Mürüvvet; Gulieva, Aynur; Kalyoncu, Mine; Karabulut, Seyda; Cakar, Neval Metin; Uzunoglu, Burcu; Tastan, Gamze; Kocaman, Damla; Coskun, Ozge Kenis; Gorgun, Ilknur; Randall Messier, R; Mertz, Pamela; Karakoc, Fazilet; Karadag, Bülent.
Afiliación
  • Balci MS; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Gökdemir Y; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Eralp EE; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Ergenekon AP; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Yegit CY; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Yanaz M; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Gulieva A; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Kalyoncu M; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Karabulut S; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Cakar NM; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Uzunoglu B; Selim Cöremen Cystic Fibrosis Center, Marmara University, Pendik Education and Training Hospital, Istanbul, Turkey.
  • Tastan G; Selim Cöremen Cystic Fibrosis Center, Marmara University, Pendik Education and Training Hospital, Istanbul, Turkey.
  • Kocaman D; Nutrition and Dietetics, Marmara University, Pendik Education and Training Hospital, Istanbul, Turkey.
  • Coskun OK; Department of Physical Medicine and Rehabilitation, School of Medicine, Marmara University, Istanbul, Turkey.
  • Gorgun I; Turkish Cystic Fibrosis Association (KIFDER), Istanbul, Turkey.
  • Randall Messier R; Cystic Fibrosis Foundation Virtual Improvement Program-F7 Team, Bethesda, USA.
  • Mertz P; Cystic Fibrosis Foundation Virtual Improvement Program-F7 Team, Bethesda, USA.
  • Karakoc F; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
  • Karadag B; Division of Pediatric Pulmonology, School of Medicine, Marmara University, Istanbul, Turkey.
Pediatr Pulmonol ; 2024 Sep 02.
Article en En | MEDLINE | ID: mdl-39221873
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Pediatr Pulmonol Asunto de la revista: PEDIATRIA Año: 2024 Tipo del documento: Article País de afiliación: Turquía Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Pediatr Pulmonol Asunto de la revista: PEDIATRIA Año: 2024 Tipo del documento: Article País de afiliación: Turquía Pais de publicación: Estados Unidos