2.3.1 CF R.I.S.E Program
The CF R.I.S.E. program includes 13 Knowledge Assessment Questionnaires (KAQ) and 6 Responsibility Checklists (RCL) forms18. The purpose of the KAQ is to evaluate the individual’s basic knowledge about CF. It covers topics related to lung and liver health, infection prevention methods, pancreatic insufficiency, nutritional principles, endocrinology problems, school, work, financial, and social security. These assessments are introduced gradually. Each module is completed independently by the pwCF without parental or team assistance, to accurately assess areas for knowledge improvement. Once completed, the responsible CF care team member devises a plan to address identified knowledge gaps. After providing the necessary trainings, the modules are reassessed in subsequent visits or in 6 to 12 months to measure progress18.
The CF RISE program covers six responsibility checklists: 1) Working with the CF care team and other healthcare professionals, 2) Responsibility of CF Treatments, 3) Living with CF, 4) CF Transition, 5) School and Career Plan, 6) Finance and Insurance. These are designed to facilitate the acquisition of age-related self-care skills for everyone. Although KAQs are applied only to patients, RCL forms are collaborative assessments involving a designated support individual and the CF healthcare team to assess and monitor the patient’s current level of responsibility. In the RCL forms, patients/parents are required to respond to each question using a Likert scale ranging from 1 to 5. The results of each question are compared between the parent and pwCF, and if there is inconsistency, the individual’s level of responsibility for that question is reevaluated 18.
A target responsibility is identified for the next meeting between the transition clinic (TC) representative and the pwCF based on the RCL results. The assigned tasks are recorded in a progress report, signed by both parties, and a copy of the progress report is given to the pwCF. The assigned responsibility is determined based on the individual’s needs and level, and the interaction between the TC representative and the pwCF is contractual in nature. The progress of patients is reassessed one year later with renewed RCLs 18.