1. INTRODUCTION
Cystic Fibrosis (CF) is a genetic disorder with an incidence rate of 1/3000-1/6000 live births 1-3. In the 1930s life expectancy for people with CF (pwCF) was limited to just a few years, but medical advancements have increased life expectancy, with modulatory drugs targeting specific gene defects being effective in a majority of the CF population 4.
Currently, more than half of the CF population in Europe, Canada and North America is over 18 years old, a significant increase is expected in the number of pwCF transitioning from pediatric to adult care5,6. The transition period can be a stressful time for young adults with chronic diseases and can result in poor health outcomes7. A structured transition program can help prepare pwCF and their caregivers and lead to higher patient satisfaction, lower anxiety, and greater self-esteem8,9.
When developing a successful framework for transitioning healthcare services for pwCF, it is important to consider strategies that will help prepare pwCF and their caregivers, as well as tools that can track and measure transition progress at various stages 10.
A comprehensive transition program should involve a well-coordinated approach that includes a clinical summary with contributions from all members of the pediatric multidisciplinary team (nurses, doctors, dieticians, psychologists, social workers, and physiotherapists), an opportunity to meet the adult care team at the adult CF center, and ensuring timely access to an adult care provider11,12. In cystic fibrosis (CF) transfer programs, the involvement of social workers is paramount for a seamless transition from pediatric to adult care. These professionals, form a multidisciplinary transition team, with social workers often serving as the ”transition coordinator” for individual patients12,13. As the number of adults with CF increases, comprehensive transition programs and clinics are becoming more common in many countries 14-16.
CF R.I.S.E. (Responsibility, Independence, Self-Care, Education) is a planned, structured transition program created to improve quality of life, maximize independence, and minimize interruptions in care as a patient transitions from pediatrics to an adult subspecialist12,16. This program has been successfully implemented in the United States since 2015 providing tools and resources to help patients and caregivers understand the disease and develop skills for managing it independently. CF R.I.S.E. aims to provide a gradual and purposeful transition of responsibility over time from support person to patient, while facilitating communication among pediatric and adult care teams, patients, and caregivers 17. The program has the potential to address the deficits in transition and has been positively evaluated by CF healthcare providers during its implementation period 10,12.
Although adult patients have been increasing steadily over the years, the number of adults with cystic fibrosis in Turkey is relatively lower compared to Europe and North America. Being the largest center in Turkey, there are 424 individuals with CF in Marmara CF center and only 103 (24.3%) are adults. Since there was no structured transition program in our center, we decided to implement the CF RISE program by making the necessary translations and adaptations during the Cystic Fibrosis Foundation (CFF) Virtual Improvement Program-F7 (VIP-F7) training program. We named our transition program CF S.O.B.E, which consists of the first letters of responsibility, self-care, independence and education in Turkish.
Our aim was to convey our experience of the adaptation and implementation process of the CF RISE program in a CF center with limited resources. To our knowledge, this is the first implementation of CF RISE program outside of the US and in another language other than English.