3. DISCUSSION
In this quality improvement program we aimed to report our experiences regarding the adaptation and implementation process of the CF RISE program in a CF center with limited resources. The successful translation and implementation of the program were accomplished within a six-month period.
The pilot study provided positive feedback from patients, demonstrating their favorable evaluations regarding the content and comprehensibility of the program. Young pwCF described the education they received as ”exciting and necessary,” stating that it allowed them to better understand their condition and take responsibility for their care. This program was implemented through strong collaboration among pediatric pulmonologists, CF nurses, dietitians, and volunteer patient representatives. We had no financial support or social worker.
Formal transition processes for pwCF have been implemented worldwide since 1982, primarily in the United States and Canada16,19. The United Kingdom has been at the forefront of establishing a transition program in Europe, and studies conducted in in several countires have reported positive outcomes regarding structured transition programs 15,20,21. Among these transition protocols, the CF RISE program, developed as part of quality improvement initiatives with resources from the CFF, has been successfully implemented in the United States for many years 17. Therefore, the CF RISE program was chosen as a global example to be implemented in our country, representing the first translation and adaptation of the CF RISE program into a language other than English.
The success of establishing the CF S.O.B.E. program can be attributed to various factors. Active participation of a multidisciplinary team, expertise of subject specialists in developing educational resources, and the inclusion of patient representatives and language educators played crucial roles. Additionally, regular meetings between the transition team and QI coaches from the CFF VIP-F7 program, as well as valuable feedback from patients and families, facilitated continuous improvements and adaptations to meet the needs of patients and the healthcare system.
During the development of this program, a significant challenge encountered was the absence of a designated social worker as a project coordinator. The establishment of transition protocols for adult clinics and their continuous implementation within the hospital setting are critical, and social workers, typically serving as program coordinators in centers where CF R.I.S.E has been successfully implemented for years, play a vital role within the transition team 12,16,22. Due to limited availability of social workers and psychologists in our hospital, it was not possible to assign a social worker to the transition project. As a result, a significant portion of our patients did not have access to expert guidance on social security and disability rights. Consequently, pwCF and their families lacked awareness of government regulations concerning social security and disability rights, and their knowledge on this topic was limited. As part of this project, collaboration was established with volunteer experts through the CF patient and family association (KIFDER) to review government regulations regarding social security and disability rights and prepare written materials. A comprehensive online meeting was conducted with the entire transition team to ensure an inclusive approach and facilitate the dissemination of information to all team members.
Collaborative consultations and joint clinics involving professionals from both the pediatric and the adult clinic are often preferred over direct handovers 12,22. The next phase of our research involves integrating the adult clinic into the transition program and establishing a fully structured joint transitional outpatient clinic aimed at optimizing the transition process for patients. These clinics would be dedicated to patients who are prepared to transition from the pediatric clinic to the adult clinic at our center.
However, the implementation of the program in a single center may have certain limitations regarding its generalizability to other centers in Turkey. In order to gain a deeper understanding of the program’s effectiveness, future studies should emphasize the assessment of its long-term impact on patient outcomes, as well as its suitability for different centers and the healthcare system in our country. With this objective in mind, following the initial evaluations of the CF SOBE program at our center, our aim is to distribute the resources we have to CF centers nationwide and promote the implementation of structured transition practices throughout the country.