Department of Psychiatry, University of California, La Jolla, San Diego, California, USA.
Child and Adolescent Services Research Center, 3665 Kearny Villa Rd., Suite 200N, San Diego, California, 92123, USA.
Pediatr Rheumatol Online J. 2020 Aug 17;18(1):66. doi: 10.1186/s12969-020-00460-7.
The purpose of this study was to identify reproductive health knowledge gaps and topics that concern adolescent and young adult (AYA) women with pediatric rheumatic diseases and their parents.
Data collection occurred in two cohorts. In the first cohort, young women (15-20 years old) with pediatric-onset rheumatic conditions and their parents were recruited from a single, academic pediatric rheumatology center. In the second cohort, young women (18-25 years old) with pediatric-onset rheumatic conditions were recruited from a national conference for families with pediatric rheumatic diseases. This resulted in 20 adolescents and young adults (18.3 ± 2.4 years old), and 7 parent focus group participants. Focus group leaders facilitated discussions centered on reproductive health topics that participants identified as important, their sources of knowledge, and preferences for patient education and ongoing follow-up. Data were summarized independently by 4 researchers to reduce potential bias and subsequently analyzed using rapid qualitative analysis.
All participants, regardless of diagnosis, medication, current sexual activity, or current intention to have children, expressed concern about the effect of their rheumatic condition and medications on fertility, risks to mother and child during and after pregnancy, and obtaining safe and effective contraception. Additionally, some participants discussed the burden of disease and its potential impact on motherhood. Finally, participants raised concern around the effect of disease and medication on routine reproductive health care, such as menstrual cycles, feminine self-care, and preventive exams. Three themes emerged: 1) participants had been advised to avoid unplanned pregnancy, however reported receiving inadequate explanation to support this instruction, 2) participants conceptualized reproductive health as tied to rheumatic disease management and thus suggested ways to include family members in discussion, and 3) rheumatology practitioners were not considered a resource of reproductive health information.
Young women and their parents reported dissatisfaction with the availability, quantity, and quality of reproductive health information they received, particularly when related to their pediatric-onset rheumatic disease. These findings provide an initial step in understanding the patient perspective of reproductive health in rheumatology, and how to address these concerns in the care of young women with rheumatic diseases.
本研究旨在确定青少年和年轻成人（AYA）患有儿科风湿性疾病及其父母的生殖健康知识差距和关注的问题。
数据收集分两个队列进行。在第一个队列中，从一家学术儿科风湿病中心招募了患有儿科起病的风湿性疾病的年轻女性（15-20 岁）及其父母。在第二个队列中，从儿科风湿病患者家庭的全国会议招募了患有儿科起病的风湿性疾病的年轻女性（18-25 岁）。结果有 20 名青少年和年轻成人（18.3±2.4 岁）和 7 名父母焦点小组参与者。焦点小组负责人围绕参与者认为重要的生殖健康主题、他们的知识来源以及对患者教育和持续随访的偏好，促进了讨论。4 位研究人员独立总结数据，以减少潜在的偏见，然后使用快速定性分析进行分析。
所有参与者，无论诊断、药物、当前的性行为或当前的生育意愿如何，都对他们的风湿状况和药物对生育能力的影响、怀孕期间和之后母婴的风险以及获得安全有效的避孕措施表示担忧。此外，一些参与者讨论了疾病的负担及其对母亲身份的潜在影响。最后，参与者对疾病和药物对常规生殖健康护理（如月经周期、女性自我护理和预防性检查）的影响表示关注。出现了三个主题：1）参与者被建议避免意外怀孕，但报告说收到的解释不足以支持这一指示；2）参与者将生殖健康概念化为与风湿性疾病管理相关，因此建议让家庭成员参与讨论的方法；3）风湿病从业者不被视为生殖健康信息的资源。
年轻女性及其父母报告说，他们获得的生殖健康信息的可用性、数量和质量都不满意，尤其是与儿科起病的风湿性疾病相关的信息。这些发现为了解风湿病患者的生殖健康状况提供了初步步骤，并为如何解决年轻女性风湿性疾病患者的这些问题提供了指导。
