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.