ABSTRACT
With years of experience in rehabilitation program for CF patients, we note that, despite a good adherence to APA during the stays, patients do not maintain a recommended level of PAwhen they return home.We therefore set up the "CoachMois challenge", with the objective of a follow-up at home, maintaining motivation, social interactions (reduced during lockdowns) and the skills learned in rehabilitation programs. Four challenges are offered per year: 2 during spring (based on walking) and 2 during winter (based on PA at home). For each challenge, 8 to 10 patients can choose to have someone from their entourage participate. Two healthcare professionals working with patients can also participate. Patients can benefit from a fitness tracker to record their activities. The first year of the "CoachMois challenge"was only for patients from the Roscoff CF Centre. To meet growing demand, we have opened the challenge to patients from other CF Centres since November 2021 (provided to those who have already participated in a rehabilitation program at Roscoff CF Centre). Challenges are collective but individualised, and take place via Facebook when the patient is at home. The aim is to increase the level of daily PA by following a fun collective goal, and sharing challenges, tips, and live video sessions with a Roscoff PA Educator. The challenge is based on the "fun theory" (all information is much better integrated when transmitted with humor). Since July 2019, 4 challenges were organised. Because of COVID- 19, we were unable to propose any challenges in 2020. We also had to change the way we practice. We started again in June 2021. Thirty-two patients participated, 12 “carers” and 8 professionals. Evaluation questionnaires are given to patients at the end of each challenge: qualitative analysis is in progress.We would like to work on inter-CF-centre challenges with participation of our PA Educator colleagues.We could also extend the experience to other chronic diseases.
ABSTRACT
98% of male CF patients have congenital bilateral absence of the vas deferens leading to hypofertility. CF patients’ life expectancy and quality of life have improved, especially with CFTR modulators, and access to paternity is an increasingly unavoidable subject. In 2020, we built a therapeutic education program to improve patients’ knowledge and facilitate their decision-making regarding spermatozoid’s conservation ( A-1117-0011-00309 43rd ECFC). Development of e-health and the context of the COVID-19 pandemic led us to build an e-learning program. Methods and objectives: Our working group, including CF patients and parents, teamed up with an e-learning solutions expert agency. We wanted to facilitate access to training and better respect patients’ receptiveness to receive this sensitive information. The patient could review on his own after a face-to-face session. The objective was to broaden access for the parents and partners of boys and men with CF and provide a solid basis for discussion between patients and caregivers. Results: This e-learning training is available on PC and Smartphone. Patient data are protected according to French regulations. The training consists of 5 independent modules 1: Initial knowledge self-assessment, 2: CF male hypofertility, 3: Spermogram with a motion design on its practical modalities, 4: Surgical collection of sperm, 5: Video testimony of a patient, and a satisfaction questionnaire. Discussion: We started the program in June 2020 with voluntary patients. We submitted this work to the GETHEM (French National Therapeutic Education Working Group) in June 2021, which validated its promotion at the national level in October 2021. This program has been well received but the number of connections remains low (17 professional, 10 patients). The subject requires an adoption time by caregivers, and will re-launch in 2022. An additional module concerning genetic transmission of the disease to children as a CF parent is underway.