Pediatric Rheumatology volume 21 , Article number: 95 Cite this article. Metrics details. Although the advent of new therapeutics for juvenile idiopathic arthritis JIA patients has considerably lessened the impact of the disease and reduced its sequelae, the outcomes of JIA remain important in their lives. Disease repercussions and side effects of treatments may affect sexual health and cause psychological distress. This aim of the study was to determine the expectations of adolescent JIA patients and the perceptions of their parents regarding knowledge and communication with healthcare providers HCPs in the field of sexual health SH.
In France, from September to April , a survey was conducted, using anonymous self-administered questionnaires, among JIA patients adults aged 18—45 years to provide insights from their recollection of their adolescence and their parents in nine rheumatology centers and three patient associations. The responses to the 76 patient questionnaires and 43 parent questionnaires that were collected were analyzed.
Half of the patients thought JIA impacted their romantic relationships, but the results were less clear-cut for their sexual activity; and The patients and their parents thought that ideally, the topic should be addressed in an individual patient education session at the hospital More patients than parents said the following digital information tools must be used: videos HCPs should consider addressing the unmet need for SH discussions during their patient encounters.
To meet this need, we propose concrete actions in line with the wishes of patients and parents. Juvenile idiopathic arthritis JIA is a group of inflammatory joint disorders that appear before the age of 16 years, last for more than 6 weeks, and have no recognized cause [ 1 ]. Its prevalence in Europe and North America ranges from 16 to per , persons and in France it ranges from 1 to 5 per10, persons [ 2 ]. Some patients achieve remission after appropriate therapy during their childhood or adolescence.
Although new therapeutics for JIA patients have considerably lessened the impact of the disease and reduced its sequelae [ 4 ], the outcomes of JIA remain important in their lives [ 5 , 6 , 7 ], particularly, in their sexual activity [ 8 , 9 ]. Moreover, the unpredictable fluctuations and flares in JIA, which are common in many pediatric chronic diseases e. The management of JIA patients is based on a multidisciplinary care relationship in pediatrics involving three key actors: the patients, their parents, and healthcare providers HCPs.
