The ReproKnow tool was designed to evaluate what women with a broad range of rheumatic diseases know about disease-related reproductive health topics. In our cohort of female, reproductive-age patients, ReproKnow revealed key knowledge gaps related to birth outcomes, safety of lactation, likelihood of fertility, efficacy of contraceptive methods, and medication safety.
The content of ReproKnow was intended to be relevant for reproductive-age women with any rheumatic disease that is treated by a rheumatologist. Several reproductive knowledge assessments exist for specific immune-mediated diseases (e.g., Pregnancy in Rheumatoid Arthritis Questionnaire (PIRAQ) [23], and Crohn’s and Colitis Pregnancy Knowledge Score (CCP-Know) [24]. However, such tools are not available for the majority of rheumatic diseases, including diseases with high pregnancy-associated mortality and morbidity, such as systemic lupus erythematosus. This underscores the potential utility of a general tool that assesses knowledge about the shared reproductive risks across rheumatic diseases. ReproKnow is also brief, readable, inexpensive, and easy to administer, and may be adaptable for a wide range of research or clinical purposes. The 100% completion rate among all users underscores its feasibility, particularly in clinical settings.
Our study provides evidence that ReproKnow is a promising tool for assessing reproductive knowledge. First, knowledge scores reflected the level of formal rheumatology training and education of users, including fellows, nurses, and patients, which suggests that it might have acceptable construct validity. Secondly, ReproKnow appeared to reflect patients’ knowledge based on their reproductive experiences. Women who had children after their disease diagnosis had higher knowledge scores than did other women; these women likely had some disease-related health counseling during their pregnancies, which may have translated into greater reproductive knowledge. Similarly, lower knowledge scores attained by women who had hysterectomies or sterilization procedures may be reflective of less reproductive health counseling given to women who do not have reproductive potential.
ReproKnow’s relatively low internal consistency might be considered a potential weakness. While Cronbach’s alpha is ideal for scales that have multiple response options (e.g., Likert), coefficients may be artificially low for scales with fewer responses [29]. Our interpretation of our findings from PCA and factor analysis were that a single factor solution did not sufficiently explain the variance in the model, and a multiple-factor solution lacked clinical or conceptual meaning. It is possible that future research with ReproKnow involving larger samples of women will reveal a meaningful latent structure. However, the internal consistency, PCA, and factor analysis results may also reflect that ReproKnow is meant to test a broad range of topics across reproductive health, including pregnancy, pregnancy prevention, lactation, and heritability.
Certain patient characteristics were associated with better total knowledge scores, including younger age, White race, and higher educational attainment. However, total knowledge scores or scores on the medication risk questions did not differ between users or non-users of potentially fetotoxic medications. Gaps in reproductive health knowledge among women who use fetotoxic medications may have particularly deleterious effects, especially among women who conceive while using these drugs.
Our analysis also assessed women’s knowledge about specific reproductive health domains. Most women overestimated their offspring’s risk for congenital anomalies and underestimated the safety of breastfeeding. This finding has been previously reported in studies of the general population, in which many women overestimate the absolute risk of congenital fetal anomalies, and women who use medications for any indication are less likely to breastfeed due to concerns about safety [34, 35]. However, among women with rheumatic diseases, the risk of congenital anomalies does not differ significantly from the general population, including among children who have been exposed to pregnancy-compatible anti-rheumatic drugs before or during pregnancy [36]. Breastfeeding also appears to be safe for women who use lactation-compatible medications [33]. Our results suggest that some patients may benefit from counseling about risk of congenital anomalies and breastfeeding safety, to help them to make informed decisions about childbearing and breastfeeding.
Approximately half of patients incorrectly answered questions about fertility, the efficacy and safety of contraceptive methods, and preconception planning; these knowledge gaps may affect reproductive decision-making and behaviors, and translate into suboptimal reproductive health outcomes. Work by Mosher et al. suggests that women who underestimate their childbearing potential may be more likely to engage in unprotected sex, thus increasing their risk of unintended pregnancy [37]. In our cohort, only 41.2% of women were able to correctly identify the most effective contraceptive method of the choices provided. Women with low contraception knowledge may also overestimate the efficacy of methods such as condoms as compared to more efficacious methods (e.g. intrauterine devices), which might further increase their risk of unintended pregnancy even if they do use contraception [38]. More work is needed to assess whether patients with better reproductive knowledge more accurately ascertain reproductive risks associated with their diseases and medications, and make more informed family planning decisions. Several consensus guidelines and reviews are available to help providers educate patients with rheumatic diseases about reproductive health and family planning [11, 33, 39,40,41].
Our study and analytic design had certain limitations. First, while educational attainment and proportion of white participants in our sample were similar to the demographics of the general western Pennsylvania population, the generalizability of our findings to women from other racial/ethnic or socioeconomic backgrounds may be limited [42]. Our findings may also overestimate the reproductive knowledge of women with rheumatic diseases: women with low functional literacy may have declined participation, and white women, whose knowledge scores were generally higher than other women, were overly represented in our cohort. Therefore, knowledge scores in this cohort may be higher than scores in a more diverse group of women with rheumatic diseases. In addition, while ReproKnow asked women to answer questions based on “most women’s” experiences, some women may have answered questions based on their own experiences; for example, women who personally experienced contraceptive failure or infertility, might have answered those questions incorrectly based on their own experiences rather than an understanding of population risk. Our perspective is that a “wrong answer” might actually provide an opportunity for a provider to clarify patients’ myths or misconceptions.
In addition, more research is needed to further develop the psychometric properties of ReproKnow. Additional testing of the tool in a variety of clinical (e.g., community-based, academic, or hospital settings, and different geographic locations) or research settings will help to further support the validity and reliability of ReproKnow. Our sample was not racially diverse, and the tool should be explored in more diverse populations of women with rheumatic diseases, perhaps with a wider range of rheumatic diseases. Criterion validity could be explored by assessing whether high scores on ReproKnow translate to better reproductive outcomes over time, perhaps in a longitudinal cohort of women with rheumatic diseases. High scores on a self-administered contraception knowledge assessment in one study predicted more consistent contraception use over time among young women who did not desire pregnancy [18]; thus, it is conceivable that patients’ reproductive knowledge could be linked to behaviors that optimize patient’s reproductive outcomes. This should be explored in future testing of ReproKnow.
In conclusion, ReproKnow is a tool that may help to evaluate the reproductive knowledge of women with a range of rheumatic diseases across a variety of topical domains. Women who use potentially fetotoxic medications appear to be a particularly important target for educational interventions. Given the particularly low scores in contraception, breastfeeding, and birth outcomes, women also may benefit from enhanced knowledge about these topics. Providers should consider identifying addressing specific knowledge gaps in order to provide women with rheumatic diseases with patient-centered, comprehensive care. More research is needed to determine what types of educational interventions may help to close the knowledge gaps in this high-risk population of women.