CRECHE Unit, Department of Pediatrics, INSERM CIC 1405, CHU Clermont-Ferrand, 1 place Lucie & Raymond Aubrac, Clermont-Ferrand, 63100, France.
Department of Public Health, CHU Clermont-Ferrand, Clermont-Ferrand, France.
Pediatr Rheumatol Online J. 2023 Sep 5;21(1):95. doi: 10.1186/s12969-023-00884-x.
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 2021 to April 2022, 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 58.7% of the patients said they would be comfortable discussing the subject with HCPs, but only 26.3% had done so, mainly regarding biomedical issues. The patients and their parents thought that ideally, the topic should be addressed in an individual patient education session at the hospital (51.3% and 34.9%, respectively), in a regular consultation (47.4% and 53.5%), or in a dedicated consultation requested by the adolescent without the adolescent's parents being informed (38.2% and 20.9%). Most of the respondents thought HCPs should be proactive in SH (77.6% of the patients and 69.8% of their parents). More patients than parents said the following digital information tools must be used: videos (29.0% vs. 9.3%, p = 0.0127) and smartphone applications (25.0% vs. 9.3%, p = 0.0372).
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.
NCT04791189.
尽管新型治疗药物的出现极大地减轻了幼年特发性关节炎（JIA）患者的疾病影响，降低了其后遗症风险，但 JIA 的治疗结果仍然对他们的生活很重要。疾病的影响和治疗的副作用可能会影响到他们的性健康，并导致心理困扰。本研究旨在确定青少年 JIA 患者及其父母对性健康（SH）领域的医疗保健提供者（HCP）的知识和沟通的期望。
2021 年 9 月至 2022 年 4 月，在法国的九家风湿病中心和三家患者协会中，采用匿名自填式问卷，对 JIA 患者（18-45 岁的成年人，以回忆青春期时的情况提供见解）及其父母进行了调查。
共收集到 76 份患者问卷和 43 份家长问卷的回复进行了分析。一半的患者认为 JIA 影响了他们的恋爱关系，但对其性行为的影响则不那么明确；58.7%的患者表示他们愿意与 HCP 讨论这个话题，但只有 26.3%的患者这样做过，主要是关于生物医学问题。患者及其父母认为，理想情况下，这个话题应该在医院的个体患者教育会议上（分别为 51.3%和 34.9%）、在常规就诊时（分别为 47.4%和 53.5%），或在青少年不通知其父母的情况下要求的专门就诊时（分别为 38.2%和 20.9%）进行讨论。大多数受访者认为 HCP 应该主动关注 SH（分别为 77.6%的患者和 69.8%的家长）。相比家长，更多的患者表示必须使用以下数字信息工具：视频（29.0%对 9.3%，p=0.0127）和智能手机应用程序（25.0%对 9.3%，p=0.0372）。
HCP 应考虑在患者就诊期间讨论未满足的 SH 需求。为了满足这一需求，我们根据患者和家长的意愿提出了具体的行动方案。
NCT04791189。
