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Abstract
Objective Management of reproductive health-related issues is crucial for patients with SLE, given this is a disease that primarily affects women of childbearing age. Little is known as to how the 2020 American College of Rheumatology (ACR) Reproductive Health in Rheumatic Disease Guideline is experienced by an underserved, primarily Hispanic population and their physicians as it relates to pregnancy planning and contraception conversations. Given this population experiences high rates of unplanned pregnancies and worse SLE outcomes compared with the non-Hispanic white population, it is crucial to understand how reproductive health is discussed in this setting.
Methods A survey based on the 2020 ACR Reproductive Health Guideline was created and distributed in English and Spanish in the outpatient setting to 151 patients with SLE to determine patients’ beliefs, experiences and limitations with reproductive health discussions. Associations between categorical variables were evaluated using Pearson’s χ2 or Fisher’s exact test, as appropriate, and differences in continuous variables were assessed using Wilcoxon rank-sum test.
Results English language survey respondents were significantly more likely to report having conversations regarding contraception, pregnancy planning and peripartum medication use than the Spanish survey respondents. Two-thirds of all respondents relied on the rheumatologist as a top source of reproductive health information.
Conclusion Disparities exist regarding reproductive health conversations on multiple topics between English-speaking and Spanish-speaking populations with SLE. Further understanding is needed to clarify why reproductive health conversations occur at lower frequencies in Spanish-speaking SLE populations.
- Lupus Erythematosus, Systemic
- Health services research
- Outcome Assessment, Health Care
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
SLE is a chronic autoimmune disease that primarily affects women of childbearing age; hence, timely conversations regarding reproductive health are paramount for this population.
Unfortunately, the literature demonstrates that both patient-reported and physician-reported barriers exist in regard to routine reproductive health conversations, leading to unacceptably low rates of appropriate contraception use and pregnancy planning discussions.
WHAT THIS STUDY ADDS
Our study demonstrates that Spanish-speaking patients with SLE receive contraception counselling at lower frequencies than their English-speaking counterparts, as well as less frequent conversations regarding pregnancy planning and peripartum medication use.
Some, but not all, of these differences may be due to Spanish-speaking patients with SLE on average being older.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Clinicians who care for patients with SLE must consistently address reproductive health concerns with this population and should especially make a concerted effort to do so with patients lacking English fluency.
Introduction
SLE is a chronic autoimmune disease that predominantly affects women of childbearing age, requiring them to navigate issues regarding contraception and planning for a family throughout the course of the disease. Further, SLE classically has a greater burden in both frequency and severity in non-Caucasian ethnic groups, including the Hispanic white population compared with the non-Hispanic white population.1 2 Compared with their non-Hispanic white counterparts, US Hispanic patients with SLE are known to have worse outcomes, including but not limited to higher rates of renal disease and mortality from all causes. The US Hispanic SLE population also has higher rates of adverse pregnancy outcomes, recently reported in the Predictors of Pregnancy Outcome: Biomarkers in Antiphospholipid Antibody Syndrome and Systemic Lupus Erythematosus (PROMISSE) cohort and other studies.3–5
In an attempt to improve on the way reproductive healthcare is delivered to patients with SLE and other rheumatic diseases, the American College of Rheumatology (ACR) compiled and published their first set of guidelines in 2020, addressing the management of reproductive health in rheumatic and musculoskeletal conditions.6 While these guidelines are a welcome ‘first step,’ it would be important to understand the degree that they are implemented within clinical practice following their publication and dissemination from the organisation that created them. Further, these guidelines were compiled and created from published data that did not emphasise a population that represents a classically underserved, socioeconomically disadvantaged, primarily Hispanic patient population such as found in our institution, the Los Angeles General Medical Center (LAGMC), the largest safety net hospital in Los Angeles, affiliated with the University of Southern California.7
In the study reported here, we distributed a survey based on the 2020 ACR Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases (2020 ACR Guidelines) to determine patients’ beliefs, experiences and barriers with reproductive health discussions in our outpatient SLE patient population after publication of the guidelines. The goal is to obtain patient-reported data on how the 2020 ACR Guidelines are managed by and experienced by our primarily Hispanic SLE patient population and the physicians who work with them, and to provide preliminary data for future intervention planning.
Patients and methods
Local institutional review board (IRB) approval was obtained. An anonymous 28-question survey was devised based on the 2020 ACR Guidelines and the authors’ clinical experiences (online supplemental appendix 1). Briefly, this survey collected pertinent clinical demographics, a patient-reported SLE medication list, reproductive health history and current sexual history/practices, patient-reported characteristics regarding outpatient discussions with ‘lupus doctors’ (rheumatologists) regarding contraception and family planning, patient-reported knowledge on the need for SLE disease control prior to conception, patient-reported knowledge on the safety of medications during pregnancy and breastfeeding, patient-reported knowledge of hydroxychloroquine use during conception and pregnancy, and limitations to discussing reproductive health issues in the outpatient setting. This survey was written in both English and Spanish and pilot-tested with six English-speaking and six Spanish-speaking patients with SLE for comprehension, logic and flow, acceptability and length/adherence. Feedback from patients was used to edit words and phrases for improved comprehension. The final English and Spanish versions were then uploaded as electronic versions into REDCap, an electronic cloud-based database software.
Supplemental material
The LAGMC rheumatology clinic is staffed by five to six attending physicians per half day, five to six rheumatology fellows, and four to seven internal medicine residents. On average, 85% of our clinic self-identifies as Hispanic and is of Mexican or other Central American heritage, and 85% are insured by Medi-Cal (California’s Medicaid programme). One attending rheumatologist is natively bilingual (English/Spanish), two are learnt bilingual and three rely on medical translation services for full care. The majority of rheumatology and internal medicine trainees rely on medical translation services to provide care for the Spanish-speaking patients at the LAGMC clinic.
Inclusion criteria included female with a confirmed diagnosis of SLE by a rheumatologist, between the ages of 18–50 per the electronic medical record (EMR) at the time of clinic assessment, and able to read English or Spanish on an electronic tablet. Two patients self-identified as >50 years old despite them meeting the inclusion criteria based on the information on the EMR. Ultimately, the age limit was expanded to include these two patients to be more representative of the SLE clinic population. The LAGMC outpatient clinic sees approximately 12 eligible patients with the above criteria per week. Patients in each clinic session were reviewed for eligibility by LMW via electronic medical record and marked as potential candidates. Eligible patients were approached in the clinic by one of the study team members or the Division of Rheumatology research coordinator, Sara Madrigal. Each study member who was not bilingual in both English and Spanish used a certified medical language interpreter when approaching each patient. Patients were offered either the English or Spanish language survey based on patient preference. The survey was distributed from 14 March 2023 to 19 September 2023. Eligible patients who agreed to take the survey answered the questions on the electronic tablet via the REDCap application and received $30 as compensation. Patients did not have to complete the survey to receive full compensation. Our response rate from patients during the above period was 94%.
Due to the nature of some questions, branching logic was used, and not all questions were available to all patients. For example, if a patient reported not attempting or experiencing a pregnancy after SLE diagnosis, then questions that collected data on pregnancy in light of SLE diagnosis (ie, use of hydroxychloroquine during pregnancy; the importance of SLE disease control in the peripartum period) did not populate in the electronic software for patients to answer.
Survey questions were summarised using frequency (percent of total) for categorical variables and median (IQR) for continuous variables. Associations between categorical variables were evaluated using Pearson’s χ2 or Fisher’s exact test, as appropriate, and differences in continuous variables were assessed using Wilcoxon rank-sum test. Multivariable analysis was conducted using logistic regression. All tests were two sided and a p value <0.05 was considered statistically significant. All analyses were done in R V.4.2.3.
Of note, the nine patients who endorsed sterilisation as their method of contraception were included in our analysis as sterilisation could include monogamous male partner sterilisation (and hence, patients could be sexually active with another male partner in the future and should be appropriately counselled on teratogenic medication). Additionally, we felt that female patients who had experienced sterilisation should still be screened for appropriate contraception use, as a history of female sterilisation is not always readily apparent on chart review and these patients should still be screened for pregnancy potential if on teratogenic medications. Finally, given the high rates of serious SLE in our clinic requiring long-acting teratogenic mediations, as mentioned above, we opted to analyse all answers to the questions regarding conversations on pregnancy and contraception rather than stratifying by teratogenic medication use for this manuscript or by disease activity (the latter which we did not collect in this study).
Results
Demographics
Results from 151 respondents are shown in table 1. There were important differences between the English and Spanish speakers. Women who chose to participate in the Spanish language survey were significantly older than those who chose to participate in the English language survey. Respondents of the Spanish language survey were more likely to identify as married or in a domestic partnership. A significantly greater proportion (34.9%) of respondents to the Spanish-language survey reported less than a high school education, compared with English language survey respondents (5.8%). Notably, the majority (98.4%) of participants in the Spanish language survey were foreign-born, compared with only 40.7% of the English language survey respondents.
Demographic associations between survey language groups
Regarding sexual activity and pregnancy intentions, table 1 highlights that 45.9% of women in the Spanish survey reported being sexually active while actively avoiding pregnancy. This contrasts with 28.9% of women in the English study who expressed similar intentions. Contraceptive practices also exhibited variation, with 20.9% of participants in the English survey reporting no use of contraception, compared with 32.3% of those in the Spanish study.
Key clinical questions
When surveying participants about whether their lupus physician had posed the ‘One Key Question’ (originally developed as a simple way for all clinicians to routinely screen women for pregnancy plans in the next 1 year) regarding their pregnancy plans for the upcoming year, a higher proportion of respondents (73.8%) from the English survey responded in the affirmative, in contrast to 45.3% of participants who took the Spanish survey (p<0.001) (table 2).8 However, in multivariable analysis after adjusting for age and other covariates, this relationship was no longer significant (online supplemental table 1). When asking participants if their lupus doctor has had at least one discussion regarding contraception in the past 1 year, 72.6% of respondents from the English survey affirmed such discussions. In contrast, only 29.5% of participants from the Spanish language survey had such a discussion with their lupus physician (p<0.001), and this remained significant after adjusting for age and other covariates in multivariable analysis (table 2; online supplemental table 2).
Supplemental material
Medications and survey questions by survey language group
For those participants who had a pregnancy or attempted pregnancy after SLE diagnosis, a very large (and similar) proportion of respondents in both the English (84.0%) and the Spanish language (85.0%) groups indicated that their lupus doctor discussed the importance of obtaining disease remission in anticipation of pregnancy (table 2). Likewise, many women from both the English and the Spanish language groups reported discussing which medications they should continue when trying to conceive or are expecting (70.8% vs 60.0%, respectively; p=0.45). However, when discussing which medications should be discontinued when pregnant or trying to conceive, only 55.5% of Spanish-survey respondents endorsed such conversations compared with 82.6% of English-survey respondents (p=0.049).
Limitations in initiating conversation
Figure 1 illustrates the leading obstacles limiting patients from discussing contraception and pregnancy with their lupus doctor. Over a fifth (21.9%) of women disclosed that concerns about whether or not it was even safe for them to become pregnant hampered their discussions with clinicians. A minority (17.9%) of women noted that their lupus doctor recommend that they speak with an OB-GYN instead. On the contrary, a considerable proportion (37.7%) remarked that there were no barriers in regard to having reproductive health conversations with their lupus doctors. Moreover, language was not marked as a reproductive health conversation limitation by any Spanish language survey respondents (online supplemental table 3). Nor was appointment time, comfort level or perception of provider knowledge.
Barriers to discussing contraception and pregnancy with lupus doctor.
In regard to sources of reproductive health information as it relates to lupus, the most frequently selected (patients could select more than one) three sources noted by patients were rheumatologists (64.9%), information found on the internet (31.1%) and OB-GYNs (25.8%) (figure 2). More English language survey respondents noted the internet as a top source (43.0% vs 15.4%; p=0.002; online supplemental table 4); otherwise, there were no significant differences between survey language group respondents.
Top sources of information regarding lupus and reproductive health.
Discussion
While the USA is a historical ‘melting pot’ of many cultures and languages, it is well documented that many sociocultural healthcare disparities do exist, a critical one being non-English fluency as a barrier to care for Latino populations.9–11 This is particularly concerning, as it is already clearly seen that the Hispanic population, compared with the non-Hispanic white population, has worse outcomes from SLE, including higher rates of adverse pregnancy outcomes. Our study revealed that women who participated in the Spanish survey were significantly less likely to be asked by their rheumatologist the ‘One Key Question’ regarding their pregnancy plans for the upcoming year compared with their English-speaking counterparts (45.3% vs 73.8%); however, the statistical significance was blunted when adjusting for age. Moreover, 70.5% of participants from the Spanish survey denied discussing contraception with their lupus doctor in the year leading up to the survey, compared with only 27.4% from the English survey, and this striking difference persisted even when adjusting for age. Spanish survey respondents also had lower rates of contraception use compared with the English survey respondents, with only 67.7% using contraception, compared with 79.1%, respectively.
Finally, our Spanish language respondents also reported significantly fewer interactions with providers regarding appropriate medications to discontinue during pregnancy, raising a concern about potential teratogenic medication exposure during pregnancy (or by inference, when attempting to conceive). This is particularly important for our population, which has a high rate of severe SLE (ie, lupus nephritis, lupus cerebritis, multiorgan involvement, refractory disease) in addition to a challenging rate of being lost to follow-up. As a result, it appears even more important to us that these conversations take place for patients under our care, regardless of medication regimen, in the event that they require urgent or emergent use of medications (such as cyclophosphamide or mycophenolate mofetil) for flare while under the care of another institution.
Women with SLE may have multiple factors that increase their risk of adverse pregnancy outcomes, including but not limited to poorly controlled SLE disease activity, use of teratogenic medications, or comorbid conditions such as antiphospholipid antibodies and lupus nephritis. The ‘One Key Question’ is described in the 2020 ACR Guidelines as a relatively straightforward way to start the conversation regarding pregnancy plans in a vulnerable population. The importance of pregnancy planning and contraception counselling has been shown to positively increase women’s knowledge surrounding the impact of SLE on pregnancy.12 Accordingly, the 2020 ACR Guidelines emphasise the importance of tailored contraception counselling based on each SLE patient’s clinical assessment (ie, antiphospholipid positivity). Our study demonstrated that women with a Spanish language preference had significant deficits as it related to in-clinic discussions regarding safe contraception use in light of their lupus diagnosis. However, we realise that our Spanish-speaking population may not have been asked the ‘One Key Question’ regarding pregnancy planning as frequently as the English-speaking population due to their older average age. There may have been an (potentially unwarranted) implicit bias that given their older age, pregnancy planning discussions were unnecessary. Despite this, discrepancies regarding contraception conversations—another key clinical question for women of childbearing age frequently on teratogenic medications—exist between English-speaking and Spanish-speaking populations, even when adjusting for age.
Interestingly, our study revealed that most English and Spanish survey respondents understood the importance of attaining clinical remission for their lupus before becoming pregnant, as was confirmed by 85% of participants in the Spanish survey and 84% from the English survey. This raises the possibility that our population’s perception of a lack of disease control could hinder reproductive health discussions. Along similar lines, as a sizeable portion of patients (37.7%) did not report any limitations in discussing reproductive health matters with their rheumatologists, this suggests that lack of timely reproductive health discussions could be a result of provider-specific difficulties. These could include appointment time constraints (fear of prolonging clinic visit and falling behind on their schedule), lack of knowledge (ie, a trainee rotating through a rheumatology clinic may not feel comfortable addressing this issue with a patient with complex SLE), lack of supervision (not all attending rheumatologists may address reproductive health issues with trainees and patients in academic teaching clinics), varying degrees of interpreter quality/competency, or gender barriers (ie, male physician with a female patient). More information about these complex issues needs to be obtained.
Our analyses focused on the differences between language preference rather than ethnicity, as it has been demonstrated that language plays a large role in patients’ disclosure of information, including in the rheumatology clinic setting.13–16 Patient-centred communication is likely one of the most important factors in patients’ disclosure of health information.13 With this in mind, there may be several factors contributing to the disparities found among our population, which is served by an extremely busy urban academic centre with a large pool of rotating trainees (nearly 200 of which could be working in the outpatient rheumatology clinic, the majority of whom are not natively bilingual in English/Spanish) at any given time, in addition to rheumatology fellows and rheumatology attendings. A lack of continuity of care with rotating medical providers can lead to a decrease in patients’ trust and perception of patient-centred care.17 18 Time constraints of appointments along with language barriers can lead to Spanish-speaking women in particular pretending to understand during their appointments, physicians not establishing rapport, and patients or providers using the lack of time to avoid bringing up sensitive topics.19 These barriers may even be present to some degree in the English-speaking population.
Finally, as was seen in our study, there may be an incorrect assumption that ‘older’ patients with SLE of childbearing age are less likely to need conversations regarding pregnancy planning. This may be far from true, as these patients may have deferred pregnancy while their SLE was active and may now desire or pursue pregnancy before menopause and therefore need adequate counsel on peripartum issues as it relates to SLE.
A unique barrier for Spanish-speaking patients is the medical provider’s utilisation of a phone or in-person interpreter if the medical provider does not speak Spanish. The majority of Spanish-speaking patients prefer an interpreter for increased understanding.20 However, medical residents often receive little to no training in the use of interpreters, and medical interpretation is often underused due to time constraints, deference of interpretation to family members, and judgement of the perceived value of information in their clinical decision-making.15 21 When used appropriately, interpreters could still contribute to the disparities seen in this study, as this creates a unique dynamic with a non-medical third party involved in the conversation and potentially affect the quality of the patient-provider relationship. The presence of an interpreter may influence Spanish-speaking women to forgo sensitive medical conversations topics like reproductive health.19
Our study offers several key strengths. This is the first study we are aware of that evaluates, from a patient perspective, just how the 2020 ACR Guidelines have been experienced ‘downstream’ over a 3-year period of exposure to providers and patients from a vulnerable minority patient population. Our survey was designed to target this population, helping to fill a gap in research and improve on the care of a high-risk population; it is important to note that our survey was pilot-tested and modified with input from the target population. Further, we gathered information on a wide variety of patient-reported reproductive health topics. We adopted a participant-friendly approach by compensating participants regardless of survey completion, reducing potential participation barriers, and thus had a relatively high participation rate for a survey which was well over 90%. These strengths collectively reinforce the reliability and relevance of our findings, contributing valuable insights to the existing body of knowledge.
A major limitation of our study is that the survey responses were anonymous, and we did not associate respondents’ answers with clinical documentation, such as verification of medication regimen, serologic profiles, disease activity or prior pregnancy histories. Surveys were also distributed based on patient language preference which could have been influenced by factors such as the team member’s role (eg, physician) potentially leading patients to choose a different language for the survey to please them. Moreover, a patient might be able to read and comprehend part of a language and therefore chose a survey in a language they are less proficient to practice. Further, although all patients are in our rheumatology clinic are staffed with an attending rheumatologist, the majority of face-to-face clinical care is provided by internal medicine residents and rheumatology fellows, all of whom have varying degrees of comfort levels and expertise with handling reproductive healthcare, and are not representative of how SLE care may be handled in the community or private practice. Therefore, our results may not be applicable to all practice settings.
In summary, we identified several potential obstacles to implementing the 2020 ACR Guidelines among participants in vulnerable, non-English-speaking population. Among these, one barrier that appears amenable to intervention is effective communication. The knowledge that Spanish-speaking patients with SLE may have lower rates of pregnancy-related and contraception-related conversations should spurn providers to proactively initiate such conversations with this specific patient population. Employing qualified language interpreters and using plain, patient-friendly language tailored to individual preferences could enhance the frequency of reproductive health discussions with SLE patients. Further, more comprehensive research is warranted to understand, and unravel further, the underlying communication barriers that reduce our ability to facilitate the successful implementation of the 2020 ACR Reproductive Health Guidelines in resource-constrained healthcare settings with non-English-speaking individuals.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by USC iStar IRB UP-23-00099. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We thank Ms Sara Madrigal, LAGMC/University of Southern California Rheumatology Study Coordinator, for her diligent help with patient recruitment and survey administration.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors MD: Data acquisition; drafting of the initial manuscript. JR: Analysis and interpretation of the data. MX: Data acquisition; drafting of the initial manuscript. MW: Conception and design of the study; drafting of the initial manuscript. LMW: Conception and design of the study; data acquisition; analysis and interpretation of the data; drafting of the initial manuscript. LMW is the guarantor and accepts full responsibility for the finished work and/or conduct of the study, had access to the data and controlled the decision to publish.
Funding Biostatistical support was funded by grants UL1TR001855 and UL1TR000130 from the National Center for Advancing Translational Science (NCATS) of the US National Institutes of Health.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.