Reproductive health knowledge and preferences in adolescent rheumatology patients: a convergent mixed methods study

Background: Sexual and reproductive health (SRH) guidelines exist for adults with rheumatic diseases (RDs), but not for their adolescent counterparts. SRH discussions are regarded as important areas of discussion by pediatric rheumatology providers. However, adolescents with RDs have unique needs that are not well elucidated. The purpose of this study was to explore SRH knowledge and information sources among female adolescents with systemic lupus erythematosus (SLE), undifferentiated connective tissue disease (UCTD), mixed connective tissue disease (MCTD), or an overlap disease given their increased risk for SRH-related adverse outcomes. Methods: This convergent mixed methods study sought to survey and interview participants from a healthcare system in central Pennsylvania. Eligibility included: (1) being 15–21 years old, (2) having SLE, UCTD, MCTD, or an overlap disease, (3) receiving care from a pediatric rheumatologist, (4) being assigned female at birth, and (5) having access to a computer or phone. Quantitatively, descriptive statistics and the Mann-Whitney U test were used for data presentation and assessment. Qualitatively, a semi-structured interview guide was developed, and thematic analysis was conducted. Quantitative and qualitative findings were assessed for convergence and presented using a joint display. Results: Sixteen participants completed the survey, and ten also completed an individual interview. Limited understanding of SRH concepts, the impact of pregnancy, and medication safety were noted in both the survey and interview results. Participants with teratogenic medication use had lower general (2.4 vs. 2.7) and lupus-specific (3.3 vs. 4.4) SRH knowledge scores compared to their counterparts with no teratogenic medication use. Qualitatively, participants voiced concern about the interplay between their disease and pregnancy, reported differences in their information sources, and discussed trustworthy sources of SRH information. Conclusions: This study identified gaps in SRH knowledge among female adolescents with susceptible RDs. Many participants are receiving SRH information from non-health care sources, but desire to have discussions on SRH with their provider. These findings signal a need for additional research in this area with expansion to other RDs and males. Clinicians and researchers can work alongside this population to develop tools and inform SRH guidelines to address patient concerns and improve overall outcomes.