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.