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.