SNAPSJIA study Survey of Adolescents' Needs and Parents' Views on Sexual Health in Juvenile Idiopathic Arthritis

Abstract

Background: Although the advent of new therapeutics for juvenile idiopathic arthritis (JIA) patients has considerably lessened the impact of the disease and reduced sequelae, the outcomes of JIA remain important in their lives and more specifically for sex life. According to the world health organization, sexual health (SH) is "a state of physical, emotional, mental and social well-being in relation to sexuality". The aim of the study was to determine the expectations of adolescents with JIA and the perceptions of their parents regarding knowledge and communication with healthcare providers (HCPs) in the field of SH. Methods: From September 2021 to April 2022, a French survey with anonymous self-administered questionnaires, was conducted among JIA patients and their parents in nine rheumatology centers and three patient associations. On the advice of a psychiatrist, we interviewed adults (age 18–45 years) for necessary hindsight from the subject. Results: 76 patient and 43 parent questionnaires were analyzed. Half the patients thought JIA impacted their love life, the results were less clearcut for their sex life. 58.7% would be comfortable discussing the subject with HCPs, but only 26.3% had done so, mainly regarding biomedical issues. Patients and parents thought the topic should ideally be addressed in hospital in an individual patient education session (51.3%, 34.9% respectively), a regular consultation (47.4%, 53.5%) or a dedicated consultation requested by the adolescent without parents being informed (38.2%, 20.9%). Most thought HCPs should be proactive (77.6% of patients, 69.8% of parents). The use of digital resources was significantly more cited by patients than by parents: video information (29.0% vs. 9.3%, p= 0.0127) smartphone application (25.0% vs. 9.3%, p = 0.0372). Conclusion: HCPs should address this unmet need for SH in hospital. The main difference between patients and parents was the use of digital tools, a preferred vector of communication for adolescents. Parents need to be reassured about their content. Clinical trial registration number: NCT04791189