At this year’s American College of Rheumatology (ACR) annual meeting, HSS presented a number of important studies focused on reproductive health for patients with systemic lupus erythematosus, rheumatoid arthritis, and other rheumatic diseases, including issues related to fertility, sexual function, use of contraception and HPV vaccination. 

What follows are some highlights from the meeting: 

Association of Menstrual Cycles and Disease Flare Activity in Women with Systemic Lupus Erythematosus and Rheumatoid Arthritis 
In this study, researchers surveyed female rheumatology patients to determine whether the menstrual cycle affects the timing of disease flares. More than 300 patients responded to the survey, and the analysis reported at the meeting included data from 122 respondents with systemic lupus erythematosus (SLE) or rheumatoid arthritis (RA) — 49 with SLE and 73 with RA. 

Overall, 39% reported an association between their menstrual cycle and disease flares, with similar rates in both the SLE and RA groups. Those who experienced these flares usually had them within the week before or during their periods. The investigators say these findings could inform physician counseling and that closer monitoring of patients during vulnerable phases of the menstrual cycle could enable more timely intervention and better disease control. Additional research is planned to assess whether demographics, lifestyle and medical conditions may influence this potential association. 

Authors: Lucy Masto, BS; Amaya Smole, BA, Caroline H. Siegel, MD, MS, Sarah B. Lieber, MD, MS, Sanjana Adurty (Weill Cornell Medical College), Jonah M. Levine, BA, Bessie Stamm, BA, Lisa A. Mandl, MD, MPH, Michael D. Lockshin, MD, Lisa R. Sammaritano, MD, Medha Barbhaiya, MD, MPH. 

Contraception Choices in Individuals with Inflammatory Arthritis and Lupus-like Disease Differ Based on Diagnosis and Teratogen Use 
This study surveyed women of reproductive age with systemic rheumatic disease about their use of contraceptives. Certain drugs prescribed for rheumatic disease are teratogenic, or can damage a fetus. Data were collected on 249 women with reproductive capacity, including 147 with inflammatory arthritis and 102 with lupus-like disorders. 

The 52 participants taking teratogenic medication were more likely to discuss contraception with their rheumatologist compared with those not taking teratogenic medication (44.2% vs. 21.8%), and more frequently reported using permanent contraception (8.0% vs. 1.1%). Those taking teratogenic medication were no more likely to use effective contraception than those who were not: 44.0% reported using less effective methods such as barrier methods and fertility awareness/withdrawal or using no contraception. Those with lupus were less likely to use more effective methods containing estrogen (31.5% vs. 14.7%), even though these methods are safe for some (but not all) lupus patients. The findings highlight the importance of using educational interventions to optimize safe and effective contraception use in patients with systemic rheumatic diseases, especially those taking teratogenic medications and those with lupus-like diseases. 

Authors: Caroline H. Siegel, MD, MS, Medha Barbhaiya, MD, MPH, Lucy Masto, BS, Amaya Smole, BA, Bessie Stamm, BA, Jonah M. Levine, BA, Sarah B. Lieber, MD, MS; Lisa A. Mandl, MD, MPH; Michael D. Lockshin, MD; Lisa R. Sammaritano, MD. 

Demographic and Clinical Factors Associated with HPV Vaccination in Young Adults with Rheumatic Disease 
Although the HPV vaccine is known to be safe and effective in people with rheumatic disease (RD), many do not get vaccinated. This study used data from the electronic health record of patients diagnosed with a rheumatic disease in adolescence, seen at HSS, to look at factors associated with HPV vaccination. Overall, the investigators found that among 321 individuals with rheumatic disease between the ages of 16 and 22, half were not fully vaccinated against HPV (2 or more doses). 

Those who were white and non-Hispanic/Latino and those who had commercial insurance were less likely to be fully vaccinated —factors that are associated with lower vaccination rates in the general population. Those who were unvaccinated were more likely to have inflammatory arthritis versus other connective tissue diseases. Those who were fully vaccinated were also more likely to have received flu and COVID-19 vaccines. Further research is needed to identify and mitigate barriers to HPV vaccination in this high-risk group. 

Authors: Caroline H. Siegel, MD, MS, Lauren Robinson, MD, Deanna Jannat-Khah, DrPH, Avi Mikhaylov, Nancy Pan, MD, Lisa R. Sammaritano, MD. 

Educational Intervention to Increase Contraception Screening and Documentation for Reproductive-Aged Women Seen in an Academic Rheumatology Clinic 

Only one-third of reproductive-aged women with rheumatic disease are prescribed effective contraception, despite the widespread use of teratogenic medications which can harm a fetus. This initiative aimed to increase the rate of provider screening and documentation of contraception use in the electronic health record for female rheumatology patients ages 18 to 45. 

Interventions from the research team included educational presentations and motivating reminders for clinical staff. Over the 24-week study period, the rate of contraception documentation for these patients increased from 11% to 54%. Future phases of this initiative will focus on encouraging rheumatologists to provide contraceptive counseling and referrals to women’s health providers for patients taking teratogenic medications. 

Authors: Caroline H. Siegel, MD, MS, Deanna Jannat-Khah, DrPH, Avi Mikhaylov, Erika Abramson (Weill Cornell Medicine), Nancy Pan, MD; Lisa R. Sammaritano, MD. 

Experiences and Attitudes Related to Assisted Reproductive Technologies Among Women with Systemic Rheumatic Disease 
Because systemic rheumatic diseases may be associated with decreased fertility in women, those with such diseases may pursue assisted reproductive technologies such as oocyte cryopreservation (OOC, or egg freezing). This study evaluated how sociodemographic factors and medical history influence OOC experiences and overall attitudes toward reproductive technologies among women with these conditions. 

Among the 265 surveyed patients of reproductive age, 21 had done OOC (most before 35 years of age) and 102 had considered OOC. The factors that increased openness to OOC included having no previous pregnancies, having greater infertility concerns, lacking a spouse or partner, having a bachelor’s degree or higher, and having a history of taking certain immunosuppressive drugs. Among those who did not already have fertility issues, 64% reported that, if necessary, they would consider using these technologies only if their rheumatologist advised it was safe. The investigators say this study highlights the importance of studying the use of assisted reproductive technologies in women with systemic rheumatic diseases, and counseling patients regarding these options. 

Authors: Sanjana Adurty (Weill Cornell Medical College), Lucy Masto, BS, Amaya Smole, BA, Caroline H. Siegel, MD, MS, Sarah B. Lieber, MD, MS, Jonah M. Levine, BA, Bessie Stamm, BA, Lisa A. Mandl, MD, MPH, Michael D. Lockshin, MD, Medha Barbhaiya, MD, MPH, Lisa R. Sammaritano, MD. 

HPV Vaccination in Adolescent and Young Adult Patients Seen in an Academic Rheumatology Center 
This study looked at rates of HPV vaccination in adolescents and young adults living in New York State who had received care from a rheumatologist. The investigators reviewed data from the electronic health record, including vaccination information from a New York State database, for 534 HSS patients ages 16 to 22. Less than half of patients had been vaccinated for HPV. The study found that HPV vaccination was more common in people with a rheumatic disease diagnosis compared to those who did not have a rheumatic disease, but not after accounting for demographic variables and receipt of other elective vaccines. Additionally, those who had received flu and COVID-19 vaccines were more likely to have been vaccinated for HPV. 

The overall low rate of HPV vaccination was concerning because young people with rheumatic diseases may be at increased risk for HPV infection and HPV-associated cancers due to immune dysregulation, immunosuppression, and gaps in preventive healthcare delivery. The researchers note that interventions are needed to improve HPV vaccination rates in this population and that targeting elective vaccine uptake in general may be a useful approach. 

Authors: Caroline H. Siegel, MD, MS, Lauren Robinson, MD, Deanna Jannat-Khah, DrPH, Avi Mikhaylov, Nancy Pan, MD, Lisa R. Sammaritano, MD. 

Knowledge and Misconceptions about Contraception Among Individuals with Inflammatory Arthritis and Lupus-like Diseases 
This study looked at what patients with systemic rheumatic disease know about the use of contraceptives, comparing the knowledge of women with inflammatory arthritis to those with lupus-like diseases. This analysis included female patients aged 18-49 years who were seen by a rheumatologist at HSS two or more times between 2020 and 2022, excluding those who reported menopause, oophorectomy, hysterectomy, or other causes of infertility. 

The participants were surveyed about the effectiveness of various contraceptives and about misconceptions related to specific methods in the context of having a rheumatic disease. The researchers found that despite being highly educated (93.2% held a bachelor’s degree or higher), about half of all patients responded incorrectly to questions about the effectiveness of various contraceptive methods. Those with lupus-like diseases were more likely to report that certain hormone-based methods have contraindications, in response to both accurate and inaccurate statements. The researchers say the results reveal the need for better counseling of patients with systemic rheumatic disease. 

Authors: Caroline H. Siegel, MD, MS, Medha Barbhaiya, MD, MPH, Lucy Masto, BS, Amaya Smole, BA, Bessie Stamm, BA, Jonah M. Levine, BA, Sarah B. Lieber, MD, MS, Lisa A. Mandl, MD, MPH, Michael D. Lockshin, MD, Lisa R. Sammaritano, MD. 

Knowledge Related to Fertility and Infertility Treatments Among Women with Systemic Rheumatic Disease 
Systemic rheumatic diseases can be associated with decreased fertility, but patients are not always aware of this connection. This study looked at patients’ understanding of these issues, taking into consideration the patient’s race, ethnicity, and socioeconomic status. 

In an interim analysis of 142 reproductive-aged women treated at HSS for rheumatic disease who completed the Fertility & Infertility Treatment Knowledge Score (FIT-KS) test, the investigators found that — compared with women in the general population previously administered the FIT-KS — women with rheumatic diseases were more likely to be non-White, Hispanic/Latina and highly educated, and less likely to have had successful pregnancies. This population was more aware of the risks of infertility due to smoking, sexually transmitted infections and being underweight. These women also had a better understanding of success rates for vitro fertilization in older women but were less knowledgeable about the effectiveness of oocyte cryopreservation (OOC, or egg freezing). Future work will focus on highlighting important knowledge gaps among women with these diseases, particularly related to options for fertility preservation. 

Authors: Sanjana Adurty (Weill Cornell Medical College); Lucy Masto, BS, Amaya Smole, BA, Caroline H. Siegel, MD, MS, Sarah B. Lieber, MD, MS, Jonah M. Levine, BA, Bessie Stamm, BA, Lisa A. Mandl, MD, MPH, Michael D. Lockshin, MD, Medha Barbhaiya, MD, MPH, Lisa R. Sammaritano, MD. 

Reproductive History and HPV Vaccination Awareness Among Women with Systemic Lupus Erythematosus and Rheumatoid Arthritis 
Women with systemic rheumatic diseases, particularly those with systemic lupus erythematosus (SLE), may be more vulnerable to HPV infection and HPV-related cervical cancer, but HPV testing and vaccination rates are low in these patients. This study compared HPV vaccination status and awareness in female patients with SLE to female patients with rheumatoid arthritis (RA). 

The analysis included 295 participants with similar demographics; notably, those with SLE were slightly younger than those with RA. Both groups were similarly likely to be sexually active and had similar rates of having regular Pap smears; however, women with lupus were more likely to have persistent abnormal smears (13.3% vs. 1.7%). While not statistically significant, two women with lupus reported a cervical cancer diagnosis compared to none with rheumatoid arthritis. HPV vaccination rates were similar for the two groups, with 37% of 158 women eligible for the vaccine (including those made eligible given extended eligibility approved in 2019 for those aged ≤45 years if clinically appropriate) reporting having received full vaccination. Among the 79 women who had never received the vaccine yet were eligible, 90% reported that it had never been offered. These findings underscore the importance of increasing HPV vaccination rates and discussions about cervical cancer screening in women with SLE and RA. 

Authors: Amaya Smole, BA, Lucy Masto, BS, Caroline H. Siegel, MD, MS, Sarah B. Lieber, MD, MS, Sanjana Adurty (Weill Cornell Medical College), Jonah M. Levine, BA, Bessie Stamm, BA, Lisa A. Mandl, MD, MPH, Michael D. Lockshin, MD, Lisa R. Sammaritano, MD, Medha Barbhaiya, MD, MPH. 

Self-Reported Sexual Dysfunction and Perceptions of Rheumatologist Engagement on This Issue in Patients with Systemic Sclerosis 
This study looked at the prevalence and risk factors of sexual dysfunction among people with systemic sclerosis (SSc). HSS researchers developed the Sexual Function in SSc Questionnaire (SFSScQ) to anonymously survey patients on whether they had problems with their sexual function and, if so, whether they had ever discussed it with their rheumatologist. Participants who completed the SFSScQ were also asked to complete the already-established Female Sexual Function Index or the International Index of Erectile Function Questionnaire. 

More than half of those who completed both surveys (26 out of 41) reported that they had sexual problems. The researchers note that while the number of survey participants was small, age, sex, race, SSc subtype and time since SSc diagnosis did not appear to be predictors of sexual dysfunction. Importantly, although about half of participants agreed it was important to discuss problems of sexual function with their doctors, 64% of those who reported sexual problems had not done so. 

Authors: Liza Morales, Robert F. Spiera, MD, Jessica K. Gordon, MD, Deanna Jannat-Khah, DrPH, Kimberly S. Lakin, MD, MS.