Cuoghi Edens

Objective: Among individuals with systemic lupus erythematosus (SLE) who became pregnant, we explored the impact of medical readiness for pregnancy and personal readiness for pregnancy on the following aspects of maternal health: (1) provider‐reported disease activity, (2) patient‐perceived disease activity, (3) mood symptoms, (4) pregnancy‐related health behaviors, and (5) pregnancy outcomes. Methods: All study participants were enrolled in a prospective registry, met Systemic Lupus Collaborating Clinics (SLICC) criteria for SLE, and had at least one pregnancy. Patient‐reported outcomes were collected at the first rheumatology visit during pregnancy. “Medically ready” for pregnancy was defined as (1) <1 g of proteinuria, (2) no rheumatic teratogens at conception, and (3) continuing pregnancy‐compatible SLE medications after conception. “Personally ready” was defined as planned pregnancy based on a London Measure of Unplanned Pregnancy score ≥10. Multivariable logistic regression models estimated the association of pregnancy readiness with each outcome of interest. Results: Among the 111 individuals enrolled, lack of medical readiness for pregnancy was associated with significantly higher rates of active disease and worse pregnancy outcomes; however, these patients did not perceive themselves as having higher disease activity. Lack of personal readiness for pregnancy was associated with significantly higher patient‐perceived disease activity. Although medical readiness did not impact depressive symptoms substantially, lack of personal readiness for pregnancy was associated with much higher maternal depressive symptoms. Conclusion: To improve pregnancy outcomes among individuals with SLE, greater focus is needed on improving medical optimization before conception. For maternal mental health and quality of life, greater focus is needed on decreasing the incidence of unplanned pregnancy.

Rheumatology patients historically were told they “can't” or “shouldn't” become pregnant. Improved rheumatic diagnostics and treatments have led to decreased morbidity and mortality and increased quality of life resulting in an opportunity to focus on fertility and its preservation. In the same vein as rheumatic disease care, assisted reproductive technology (ART), which includes freezing of egg and sperm as well as in vitro fertilization, has made considerable strides in the recent past. ART is safe for those with rheumatic diseases and has comparable outcomes to the general public, but may take additional effort due to optimal timing, rheumatic medications, and other nuances. In a specialty that treats chronic inflammatory diagnoses using teratogens and gonadotoxins, it is important to address family building desires with patients so their goals can be met. Rheumatologists have little knowledge of ART and how it impacts or applies to their patients; however, patients want their rheumatologist to be the source of knowledge for this information (Arthritis Rheumatol. 2022;74:suppl 9). Many barriers to ART exist and will be explored, with the financial burden being paramount (Glob J Health Sci. 6;1:181–191). Future efforts to examine the future fertility of rheumatology patients in an era of biologics and “treat-to-target” are needed to better understand who would most benefit from this costly and not without risk medical treatment. Given the changing landscape of financial support for ART due to insurance mandates, rheumatologists should not modify counseling based on the anticipated ability of patients to afford care. Preservation should also be broached with patients without partners and those from the LGBTQAI+ community. In addition to expanding the education of rheumatologists regarding this topic and its incorporation into clinical care, advocacy for ART access and insurance coverage is a much-needed future direction.

Many individuals with systemic lupus erythematosus (SLE) face significant challenges manifesting their family planning goals due to numerous factors, including disease-related complications, treatment-induced effects, immunological factors, self-imposed limitations, and the socioeconomic impacts of having a chronic disease. Instances of unexplained infertility are also prevalent. Encouragingly, advancements in treatment modalities, risk factor management, specialized training within the medical community, and enhanced patient/provider education have contributed to an increase in successful pregnancies among SLE patients, fostering a safer, more promising reproductive landscape. However, despite advances, individuals with SLE continue to struggle with the complexities of family building. This review explores infertility and pregnancy outcomes in SLE, fertility preservation, the role of assisted reproductive technology, and considerations for tailoring these approaches to SLE patients.

Objective: Rheumatologists have identified challenges to providing sexual and reproductive health (SRH) care to patients with gestational capacity. We conducted focus groups with rheumatologists and rheumatology advanced practice providers (APPs) to elicit their solutions to overcoming barriers to SRH care.Methods: Qualitative focus groups were conducted with rheumatologists (3 groups) and APPs (2 groups) using videoconferencing. Discussions were transcribed and 2 trained research coordinators developed a content-based codebook. The coordinators applied the codebook to transcripts, and discrepancies were adjudicated to full agreement. The codes were synthesized and used to conduct a thematic analysis. Differences in codes were also identified between the clinician groups by provider type.Results: A total of 22 clinicians were included in the sample, including 12 rheumatologists and 10 APPs. Four themes emerged: (1) clinicians recommended preparing patients to engage in SRH conversations before and during clinic visits; (2) consultation systems are needed to facilitate rapid SRH care with women’s health providers; (3) clinicians advised development of training opportunities and easy-to-access resources to address SRH knowledge gaps; and (4) clinicians recommended that educational materials about SRH in the rheumatology context are provided for patients. Although similar ideas were generated between the APP and rheumatologist groups, the rheumatologists were generally more interested in additional training and education, whereas APPs were more interested in electronic health record prompts and tools.Conclusion: Providers identified many potential solutions and facilitators to enhancing SRH care in rheumatology that might serve as a foundation for intervention development.

Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease that typically affects multiple organs and can lead to potentially fatal complications. Central nervous system (CNS) involvement in SLE is common, especially in children, and can present nonspecifically with various neuropsychiatric manifestations, described as neuropsychiatric SLE (NPSLE). Chronic headache is a common feature of NPSLE, secondary to increased intracranial pressure (also called pseudotumor cerebri (PTC)) due to inflammation or medication. Here, we highlight the importance of evaluating refractory headache (HA) in SLE patients to rule out PTC as a cause of severe morbidity. Methods: Single tertiary care pediatric center case series of 8 children who developed NPSLE in the form of intracranial hypertension at or after SLE diagnosis. Conclusion: Neurologic and ophthalmologic evaluation of refractory HA in patients with SLE, especially children, is warranted to decrease the burden of the disease and rule out treatable causes like PTC.