(86) Identifying Knowledge Gaps by Usıng Adapted CF R.I.S.E in a Low Resource Setting

Background: CF R.I.S.E is a transition program that helps improve self-management, increase baseline knowledge, and ease the transition of cystic fibrosis (CF) patients from pediatric to adult care. Marmara University (MU) CF Center (CFC) is one of the largest centers in Turkey and although the number of adult patients has increased in recent years, we do not have a structured transition program in our CFC. We implement the CF R.I.S.E program in our CFC by making the necessary translations and adaptations during the VIP-F7 training program.

We named our adapted transition program, KF S.O.B.E. S.O.B.E is a word formed by the Turkish initials of the (self care, responsibility, independence, education). Attaining the necessary knowledge about CF and its management is an essential part of the transition process.

Our aim was to understand the baselline characteristics and knowledge levels of our patients to identify education deficits. We accomplished this by initiating the KF S.O.B.E. program. It includes assessment of baseline knowledge utilizing 11 knowledge assessment questionnaires (KAQ’s). To our knowledge, this is the first implementation of CF R.I.S.E program outside of the US and the first time in Turkey.

Methods: All MU CF team members and a patient representative from KIFDER (Turkish CF patient and family association) meet for weekly QI meetings. The Clinical Microsystems QI methodology was used during this translation and adaptation process of CF R.I.S.E. PwCF 16-25 years of age that were followed-up routinely at MU CFC were included. After introducing KF SOBE program to the families and patients via an online meeting; 11 KAQs were applied to the patients via Survey Monkey whatsapp questionnaire within 2 weeks to assess baseline knowledge level regarding CF disease.

Results: KAQs were sent to 81 pwCF and 77 of them completed all of the questionnaires. Response rate was 95.1%. Mean age of the patents were 19.4±2.9 years old. 42 (52%) of them were female. Mean FEV1pp was 76.3±23.2. 14 (17.3%) and 4 (4.9%) of them colonised with P. aeruginosa and MRSA respectively. 15 (18.5%) pwCF are on modulator therapy. Percentage of correct responses given to the KAQs were between 47.9%-68.3% ( Table 1).

Conclusions: CF R.I.S.E transition program was successfuly translated and adapted to Turkish by the guidance of the VIP-F7 program. Our patients' high KA scores on lung health, airway patency, general health and equipment care, and infection control were good reflecting the focus of education on these topics in many clinic visits. The knowledge areas that needed to be supported were sexual health and college & work & health insurance. Liver disease and diabetes are not typically discussed unlees there is a prior condtion. We must support these topics as well.

Baseline KAQ results will guide us to determine knowledge gaps that may hinder successful transition and the need for additional coproduced educational support. Education of adolescents and young adults about the disease is essential to provide self-management skills and facilitate continued success in adult CF programs.
We believe that the implementation of CF R.I.S.E in a low-resource environment, without extra financial support and personnel, will set an example for other countries with similar settings.

Acknowledgements:

References: