Feasibility Testing of a Web-Based Reproductive Decision Support Tool for Cystic Fibrosis.

BACKGROUND: People with cystic fibrosis (CF) are increasingly considering their reproductive goals. We developed MyVoice:CF, a web-based patient-centered reproductive decision support tool and assessed its implementation in CF care. METHODS: We conducted a feasibility trial among 18-44-year-old women with CF and multidisciplinary CF providers. Prior to CF clinic visit, patient participants completed a baseline survey, used MyVoice:CF, and assessed acceptability, appropriateness, and usability. After clinic, participants rated impact on reproductive health communication. At 3 months post-use, participants assessed impact on reproductive health outcomes. Provider participants completed a survey and focus group regarding MyVoice:CF feasibility/implementation. We assessed outcomes descriptively. We compared MyVoice:CF's impact on outcomes from baseline to follow-up using McNemar's and Wilcoxon signed rank tests as appropriate. RESULTS: Forty-three patient participants completed baseline surveys and 40 rated MyVoice:CF's feasibility; 10 providers participated. Patient participants rated MyVoice:CF's acceptability as 4.48±0.50 out of 5, appropriateness as 4.61±0.48 out of 5, and usability as 82.25±11.02 ('A'/excellent). After MyVoice:CF use, participants reported improved reproductive health communication self-efficacy vs. baseline (3.54±1.17vs.3.95±0.93, p<0.001). At baseline, 36% of participants reported any discussion of reproductive goals/plans with their CF team in the past year compared to 59% after first visit post-MyVoice:CF use (p=0.049). Provider participants similarly rated MyVoice:CF as feasible and reported no negative impacts on clinic flow after implementation. CONCLUSIONS: MyVoice:CF is acceptable, appropriate, and usable for those with CF. Preliminary effectiveness evaluation suggests that MyVoice:CF improves self-efficacy in and frequency of reproductive health communication. Future studies should further assess MyVoice:CF's impact on reproductive health communication and outcomes.

Frequency of Contraception Documentation in Women With Systemic Lupus Erythematosus and Rheumatoid Arthritis Within the Rheumatology Informatics System for Effectiveness Registry.

OBJECTIVE: We sought to understand the frequency of contraception documentation for women with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) in a large US electronic health record (EHR)-based registry and to identify disparities by teratogen prescription and patient race and ethnicity. METHODS: Contraception documentation from structured data fields within the Rheumatology Informatics System for Effectiveness (RISE) registry was collected for women of childbearing age (18-45 years) in 2018 who had at least 2 visits with International Classification of Diseases, Ninth Revision or Tenth Revision, diagnosis codes for SLE or RA (at any time). Univariate and multivariate analyses compared the frequency of contraception documentation based on patient characteristics including diagnosis, age, race, and teratogenicity of prescribed antirheumatic medications. RESULTS: In 2018, there were 9,826 women of childbearing age with SLE and 19,009 with RA, of whom 9.1% had any contraception documented. Rates of contraceptive documentation were significantly lower for women with SLE (adjusted odds ratio [OR] 0.84 [95% confidence interval (95% CI) 0.76-0.92]). Women of Hispanic ethnicity and Black and Asian race were all less likely than White women to have contraception documentation. Teratogen prescription was associated with higher rates of contraception documentation for women with RA but not SLE (RA adjusted OR 1.31 [95% CI 1.16-1.47]; SLE adjusted OR 1.08 [95% CI 0.91-1.28]). CONCLUSION: There are large gaps in contraception documentation within the RISE registry that are particularly stark among women of color. Although these data likely underestimate contraception use, they highlight that most rheumatologists do not have a systematic approach to collecting and recording this information in the EHR.

Sexual and Reproductive Health Care Experiences and Perceptions of Women with Congenital Heart Disease.

Due to medical advances, women with congenital heart disease (CHD) are living longer, healthier lives and many are considering pregnancy. The hemodynamic changes of pregnancy present high risks of morbidity and mortality for many women with CHD. As little is known about these women's reproductive health experiences, this study explores their perceptions of pregnancy and family planning care as related to CHD. Women ages 18-45 years with a diagnosis of CHD associated with a World Health Organization (WHO) classification II-IV for pregnancy morbidity and mortality participated in individual, semi-structured interviews exploring their experiences, attitudes, and preferences toward parenthood, pregnancy, contraception and family planning care provision. Interviews were audio-recorded, transcribed verbatim. Two independent coders performed analysis using deductive and inductive coding approaches. Twenty women with CHD participated in interviews (average age 30.1 years, SD 5.85). Nine women had a prior pregnancy and 14 considered becoming a parent in the future. We identified 5 key themes among the women: (1) CHD impacted their reproductive health goals and decisions; (2) Women with CHD perceived a lack of safe contraceptive methods for their condition; (3) Women desired tailored, disease-specific sexual and reproductive health (SRH) information; (4) Women viewed their cardiologist as the primary source for SRH information and prefer provider-initiated discussions starting in adolescence; and (5) Women desire coordinated pre-pregnancy and intrapartum care between their cardiologists and women's health providers. These results provide a foundation for interventions to improve patient-centered interdisciplinary reproductive healthcare for this population.

How to Provide Sexual and Reproductive Health Care to Patients: Focus Groups With Rheumatologists and Rheumatology Advanced Practice Providers.

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.

Confronting the Medical Community's Complicity in Marginalizing Abortion Care.

This Viewpoint discusses the exclusion of abortion care from many established medical sources (such as hospitals) and from coverage by many major payers and how the health care system should legitimize and ensure clinician training in safe abortion care.

Preferences and experiences of women with epilepsy regarding sexual and reproductive healthcare provision.

RATIONALE: Women with epilepsy (WWE) have unique disease-specific considerations regarding their sexual and reproductive health (SRH), which impact decision-making around pregnancy and contraception. Understanding their perspectives, preferences, and experiences regarding SRH care contributes to optimizing patient-centered clinical practice. METHODS: We conducted individual semi-structured interviews with WWE aged 18-45 years, exploring their SRH care experiences and preferences. We audio-recorded and transcribed all interviews. Two coders used both inductive and deductive strategies to perform thematic analysis and identify key themes and representative quotes. RESULTS: Twenty WWE completed interviews (median age 23 years; range 18-43 years). Key themes included: 1) SRH counseling from neurologists often did not occur, was limited in scope, or contained misinformation, especially during adolescence and early adulthood. In particular, participants felt that they received poor counseling about contraception, fertility, folic acid, and teratogenic medications, which impacted their reproductive decision-making. 2) WWE report fragmented care between their neurologist and other SRH providers. 3) WWE prefer that their neurologists initiate routine comprehensive discussions about SRH. 4) Conversations about SRH should begin in adolescence and include private confidential discussions between neurologists and WWE. 5) Successful SRH conversations between neurologists and WWE involve detailed information, reassurance, and support for the patient's reproductive goals. CONCLUSION: WWE desire comprehensive, coordinated counseling and care regarding SRH and epilepsy, and often experience suboptimal SRH care. Better understanding of the SRH needs, preferences, and experiences of WWE will help inform interventions to optimize patient-centered SRH counseling and care by healthcare professionals, especially during adolescence.

Exploring Family Planning, Parenting, and Sexual and Reproductive Health Care Experiences of Men With Rheumatic Diseases.

OBJECTIVE: To explore family planning, parenting, and sexual and reproductive health (SRH) care needs and experiences of men with rheumatic diseases. METHODS: Men aged 18-45 years who were diagnosed with at least 1 rheumatic disease and used at least 1 antirheumatic drug were recruited from rheumatology clinics. Research coordinators engaged participants in semistructured phone interviews. A codebook was developed based on the interview transcripts and used to conduct an inductive thematic analysis. RESULTS: Participants ranged in age from 22 to 44 years (n = 20). Most were heterosexual and had at least 1 child. The most common disease diagnoses were spondyloarthritis, systemic lupus erythematosus, and rheumatoid arthritis. Four themes emerged from the interviews: (1) Men had family planning concerns, particularly related to the heritability of their diseases, their fertility, and potential effects of their medications on their offspring's health. (2) Men felt that fatigue, disability, and/or pain from their diseases either impaired or would impair their abilities to parent. (3) Men often did not discuss sexual dysfunction with their rheumatologists, even when they believed that it arose from their diseases or antirheumatic drugs. (4) Men rarely discussed any family planning, parenting, or SRH issues with their rheumatologists; gender discordance with rheumatologists did not affect men's comfort in discussing these issues. CONCLUSION: Men expressed concerns related to family planning, parenting, and SRH, which they rarely discussed with their rheumatologists. Our study suggests that some men's SRH information needs are incompletely addressed in the rheumatology clinical setting.

Sexual and reproductive health concerns of women with epilepsy beginning in adolescence and young adulthood.

BACKGROUND: Women with epilepsy (WWE) have potentially unique concerns regarding their sexual and reproductive health (SRH). Prior studies of WWE have focused narrowly on pregnancy and preconception experiences, and have not addressed concerns of nulliparous adolescent and young adult women not actively seeking pregnancy. METHODS: We conducted individual semi-structured interviews with WWE 18-45 years of age. We sampled to maximize diversity of age and parity, and intentionally included many adolescent and young adult nulliparous women not actively planning pregnancy. Interviews broadly addressed participants' SRH concerns and experiences. Interviews were audio-recorded and transcribed. Two coders performed qualitative analysis using thematic analysis with deductive and inductive approaches. RESULTS: Twenty WWE (median age 23 years, range 18-43 years) completed interviews. Twelve were nulliparous, six had children, one had a history of miscarriage only, and two were currently pregnant. WWE's narratives revealed significant concerns about family planning and reproductive health in the context of epilepsy, including: 1) seizures endangering pregnancies and children 2) teratogenic effects of antiseizure medication, 3) heritability of epilepsy, 4) antiseizure medication and epilepsy impacting fertility, and 5) interactions between antiseizure medication and contraception. CONCLUSION: WWE, including nulliparous adolescent and young adult women who are not actively planning pregnancy, have significant concerns about how their epilepsy interacts with SRH. SRH counseling for WWE should begin during adolescence and be incorporated into the transition process from pediatric to adult healthcare. Insights from WWE may aid in the creation of relevant patient-facing educational resources as well as provider-facing training and tools to meaningfully support the reproductive decision-making of WWE throughout their childbearing years.

Racial Diversity Among American Cardiologists: Implications for the Past, Present, and Future.

In the United States, race-based disparities in cardiovascular disease care have proven to be pervasive, deadly, and expensive. African American/Black, Hispanic/Latinx, and Native/Indigenous American individuals are at an increased risk of cardiovascular disease and are less likely to receive high-quality, evidence-based medical care as compared with their White American counterparts. Although the United States population is diverse, the cardiovascular workforce that provides its much-needed care lacks diversity. The available data show that care provided by physicians from racially diverse backgrounds is associated with better quality, both for minoritized patients and for majority patients. Not only is cardiovascular workforce diversity associated with improvements in health care quality, but racial diversity among academic teams and research scientists is linked with research quality. We outline documented barriers to achieving workforce diversity and suggest evidence-based strategies to overcome these barriers. Key strategies to enhance racial diversity in cardiology include improving recruitment and retention of racially diverse members of the cardiology workforce and focusing on cardiovascular health equity for patients. This review draws attention to academic institutions, but the implications should be considered relevant for nonacademic and community settings as well.

Exploring the reproductive decision support needs and preferences of women with cystic fibrosis.

OBJECTIVES: As women with cystic fibrosis (CF) live longer, healthier lives, they increasingly face decisions related to their reproductive health. This qualitative study explores their unique decision support needs and preferences to aid in the development of a CF-specific reproductive goals decision aid. STUDY DESIGN: Womenwith CF age 18-44 years participated in individual, semi-structured, telephone-based interviews, and women with CF age 18 years and older participated in semi-structured focus group discussions (FGDs). Both explored experiences and attitudes surrounding parenthood, pregnancy, contraception, and preferences for reproductive health care provision.FGDs also explored the use, content, and format of a reproductive goals decision aid for women with CF. We transcribed interviews and FGDs and conducted content and thematic analyses using an inductive approach. RESULTS: Twenty women (age range 20-42 years) participated in interviews and 18 women (age range 26-63 years) participated in three FGDs. Major themes identified included: 1) CF complicates pregnancy and parenting decisions; 2) Women make contraceptive decisions within the context of their CF; 3) Women with CF prefer to receive reproductive health counseling from their CF team; 4) Women with CF desire defragmented, coordinated reproductive health care; and 5) A disease-specific reproductive goals decision aid would encourage relevant parenting, pregnancy, and contraceptive discussions. CONCLUSION: Women with CF have unique reproductive health care needs and often face uncertainty and disjointed care when making reproductive health and contraceptive decisions. IMPLICATIONS: This study underscores the central role of the CF team and illustrates opportunities to better support women with CF in their decisions surrounding sexual and reproductive health, including through a patient-centered, disease-specific, reproductive goals decision aid.

2020 American College of Rheumatology Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases

To develop an evidence-based guideline on contraception, assisted reproductive technologies (ART), fertility preservation with gonadotoxic therapy, use of menopausal hormone replacement therapy (HRT), pregnancyassessment and management, and medication use in patients with rheumatic and musculoskeletal disease (RMD). We conducted a systematic review of evidence relating to contraception, ART, fertility preservation,HRT, pregnancy and lactation, and medication use in RMD populations, using Grading of Recommendations Assessment, Development and Evaluation methodology to rate the quality of evidence and a group consensus process todetermine final recommendations and grade their strength (conditional or strong). Good practice statements wereagreed upon when indirect evidence was sufficiently compelling that a formal vote was unnecessary.. This American College of Rheumatology guideline provides 12 ungraded good practice statements and131 graded recommendations for reproductive health care in RMD patients. These recommendations are intended toguide care for all patients with RMD, except where indicated as being specific for patients with systemic lupus erythematosus, those positive for antiphospholipid antibody, and/or those positive for anti-Ro/SSA and/or anti-La/SSBantibodies. Recommendations and good practice statements support several guiding principles: use of safe andeffective contraception to prevent unplanned pregnancy, pre-pregnancy counseling to encourage conception during periods of disease quiescence and while receiving pregnancy-compatible medications, and ongoing physicianpatient discussion with obstetrics/gynecology collaboration for all reproductive health issues, given the overall low level of available evidence that relates specifically to RMD. Guidelines and recommendations developed and/or endorsed by the American College of Rheumatology (ACR) are intended to provide guidance for patterns of practice and not to dictate the care of a particular patient. The ACR considers adherence to the recommendations within this guideline to be voluntary, with the ultimate determination regarding their application to be made by the clinician in light of each patient's individual circumstances. Guidelines and recommendations are intended to promote beneficial or desirable outcomes, but cannot guarantee any specific outcome. Guidelines and recommendations developed and endorsed by the ACR are subject to periodic revision, as warranted by the evolution of medical knowledge, technology, and practice. ACR recommendations are not intended to dictate payment or insurance decisions. These recommendations cannot adequately convey all uncertainties and nuances of patient care. The American College of Rheumatology is an independent, professional, medical and scientific society that does not guarantee, warrant, or endorse any commercial product or service. This guideline provides evidence-based recommendations developed and reviewed by panels of experts and RMD patients. Many recommendations are conditional, reflecting a lack of data or low-level data. We intend that this guideline be used to inform a shared decision-making process between patients and their physicians on issues related to reproductive health that incorporates patients' values, preferences, and comorbidities.

Family Planning and Rheumatoid Arthritis.

PURPOSE OF REVIEW: Patients with rheumatoid arthritis (RA) have special family planning considerations that require close coordination with health care providers. While this article focuses on issues inherent to female patients given their potential for pregnancy, we will review pertinent issues related to medication counseling for male patients. RECENT FINDINGS: Some women with RA may experience subfertility. Disease activity may decrease for some, but not all pregnant women with RA. Preterm birth is more common among women with RA than among healthy women, which may be explained, in part, by disease activity and/or use of certain medications. Contraception is safe for women with RA. RA is a chronic, female-predominant inflammatory disease that may affect women and men during their reproductive years. We describe some of these considerations herein and focus on strategies to help providers to clarify and support their patients' reproductive goals.

Rheumatoid Arthritis, Anti-Cyclic Citrullinated Peptide Positivity, and Cardiovascular Disease Risk in the Women's Health Initiative.

OBJECTIVE: To evaluate the incidence of cardiovascular disease (CVD) morbidity and mortality over the course of 10 years among the more than 160,000 postmenopausal women in the Women's Health Initiative (WHI) in relation to self-reported rheumatoid arthritis (RA), taking disease-modifying antirheumatic drugs (DMARDs), anti-cyclic citrullinated peptide (anti-CCP) positivity, rheumatoid factor (RF) positivity, CVD risk factors, joint pain, and inflammation (white blood cell count and interleukin-6 levels). METHODS: Anti-CCP and RF were measured in a sample of WHI participants with self-reported RA (n = 9,988). RA was classified as self-reported RA plus anti-CCP positivity and/or taking DMARDs. Anti-CCP-negative women with self-reported RA and not taking DMARDs were classified as having "unverified RA." RESULTS: Age-adjusted rates of coronary heart disease (CHD), stroke, CVD, fatal CVD, and total mortality were higher in women with RA than in women with no reported RA, with multivariable-adjusted hazard ratios of 1.46 (95% confidence interval [95% CI] 1.17-1.83) for CHD and 2.55 (95% CI 1.86-3.51) for fatal CVD. Among women with RA, anti-CCP positivity and RF positivity were not significantly associated with higher risk of any outcomes, despite slightly higher risk of death for those who were anti-CCP positive than for those who were anti-CCP negative. Joint pain severity and CVD risk factors were strongly associated with CVD risk, even in women with no reported RA. CVD incidence was increased in women with RA versus women with no reported RA at almost all risk factor levels, except for low levels of joint pain or inflammation. Among women with RA, inflammation was more strongly associated with fatal CVD and total mortality than with CHD or CVD. CONCLUSION: Among postmenopausal women, RA was associated with 1.5-2.5-fold higher CVD risk. CVD risk was strongly associated with CVD risk factors, joint pain severity, and inflammation, but not with anti-CCP positivity or RF positivity.