Huynh Brittany, Ott Mary A, Tarvin Stacey E
Division of Pediatric Rheumatology, Dept. of Pediatrics, Indiana University School of Medicine, 1120 West Michigan St. CL200, Indianapolis, IN, 46202, USA.
Division of Adolescent Medicine, Dept. of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA.
Pediatr Rheumatol Online J. 2025 Jan 20;23(1):5. doi: 10.1186/s12969-025-01056-9.
Our objective was to describe differences among adolescents and young adults (AYAs) with rheumatic disease using teratogens compared to non-users in receipt of sexual and reproductive health (SRH) counseling, teratogenicity knowledge, perceived importance of SRH topics, and preferences around counseling.
AYAs ages 14-23 years and assigned female at birth were recruited from pediatric rheumatology clinics at a Midwest tertiary care program. Participants completed a one-time online survey assessing SRH.
One-hundred eight participants completed the survey, representing a range of rheumatic diseases. 24% reported ever having sex. 36% used a teratogen. Rates of screening and counseling regarding SRH topics were low. Notably, pregnancy prevention and emergency contraception (EC) counseling by rheumatologists were uncommon and not associated with teratogen use or sexual activity. Among AYAs on teratogens, only half reported screening for sexual activity or counseling on teratogenicity or pregnancy prevention. Gaps in pregnancy prevention and EC counseling remained even when accounting for counseling by other providers. Knowledge of medication teratogenicity was also low. AYAs reported SRH topics of high importance, and many reported recent concerns. They preferred to receive information from their rheumatologist, and most agreed it is important to talk to their rheumatologist regarding these topics.
AYAs with rheumatic disease report low levels of SRH screening and counseling by their rheumatologist yet report these topics are important and want to discuss them. Gaps in teratogenicity knowledge were identified. This study identifies a need for improved communication with AYAs regarding their SRH.
我们的目标是描述患有风湿性疾病的青少年和青年（AYA）中使用致畸剂者与未使用者在接受性与生殖健康（SRH）咨询、致畸性知识、对SRH主题重要性的认知以及咨询偏好方面的差异。
从一家中西部三级医疗项目的儿科风湿病诊所招募了年龄在14 - 23岁且出生时被指定为女性的AYA。参与者完成了一项评估SRH的一次性在线调查。
108名参与者完成了调查，涵盖了一系列风湿性疾病。24%的人报告曾经有过性行为。36%的人使用过致畸剂。关于SRH主题的筛查和咨询率较低。值得注意的是，风湿病医生进行的避孕和紧急避孕（EC）咨询并不常见，且与致畸剂使用或性行为无关。在使用致畸剂的AYA中，只有一半报告接受过性行为筛查或关于致畸性或避孕的咨询。即使考虑到其他提供者的咨询，避孕和EC咨询方面仍存在差距。药物致畸性知识也较低。AYA报告SRH主题非常重要，许多人报告近期有关注这些问题。他们更喜欢从风湿病医生那里获取信息，并且大多数人同意就这些主题与风湿病医生交谈很重要。
患有风湿性疾病的AYA报告称其风湿病医生进行的SRH筛查和咨询水平较低，但表示这些主题很重要并希望进行讨论。已发现致畸性知识方面的差距。本研究确定了在与AYA就其SRH进行沟通方面需要改进。
