A blueprint for a new model of sexual and reproductive health care in subspecialty medicine.

Abstract

The United States has the highest rate of maternal mortality of any developed country in the world.1 This excess mortality burden is related, in part, to the rising prevalence of pregnant people with chronic diseases, such as systemic lupus erythematosus, pulmonary hypertension, asthma, cystic fibrosis, diabetes, hypertension, epilepsy, chronic kidney disease, and inflammatory bowel disease.2-6 Patients with chronic diseases are significantly more likely to experience adverse pregnancy and perinatal outcomes than healthy people.7-9 In addition, people of color, people who are poor, or who are otherwise socially marginalized, experience the worst pregnancy outcomes as a result of the complex intersections between chronic disease and social determinants of health, structural and medical racism, and inadequate access to quality health care.10, 11 Medicine subspecialists are often consulted to provide expert clinical care to people whose chronic diseases are particularly severe, complicated, or rare.12 Subspecialists are responsible for helping to manage the pregnancies of some of the most complex and severely ill patients—the very patients who are at greatest risk of death during pregnancy. Subspecialists who are armed with salient knowledge and experience may be better able to prepare patients for a healthy pregnancy; counsel patients with accurate and up-to-date information; address issues that might complicate a pregnancy, such as the use of teratogenic medications; advise patients about the safety of their contraception options; identify “red flags” that might suggest worsening disease severity of life-threatening sequelae during pregnancy (e.g., preeclampsia); and make referrals for abortion care when needed and if available. Such competencies may be lifesaving. However, at present, subspecialty medical practice may paradoxically potentiate adverse reproductive outcomes.10 Subspecialists across the internal medicine disciplines of rheumatology, pulmonary and critical care medicine, gastroenterology/transplant hepatology, cardiology, nephrology, endocrinology, infectious disease, and hematology-oncology, indicate that they do not have the basic knowledge, skills, or resources to manage disease-related aspects of sexual and reproductive health (SRH).13-22 Our collective of multidisciplinary subspecialty clinicians and health services researchers has described some of the common challenges that subspecialists feel undermine their provision of SRH care.4, 14, 23, 24 Our qualitative research also indicates that many patients with chronic diseases feel that their SRH needs are not met in the current subspecialty care model25-28; they overwhelmingly desire for their subspecialists to address their SRH as it relates to their diseases, but with a holistic approach that accounts for the greater context of their values, preferences, and life circumstances.29, 30 Herein, we offer a blueprint, based on a person-centered framework, to generate strategies across the subspecialties that better meet the needs of birthing people and enhance their SRH care and outcomes. The following recommendations draw upon existing principles of human rights, reproductive autonomy, and justice, which provide an essential foundation for equitable and high-quality SRH care delivery.31-33 National and local partnerships for SRH care between subspecialists and obstetrician-gynecologists (ObGyn) are needed to (a) develop clinical standards for SRH care and (b) facilitate timely care for patients' infertility, contraception, pregnancy, and abortion needs. Chronic disease severity may worsen during pregnancy, but relatively few evidence-based treatments are available for pregnant patients. In recent decades, the regulatory community sought to protect pregnant people and fetuses by excluding them from clinical trials10, 34; however, this created a data-poor zone for the clinical management of pregnant patients and ironically has put them at greater risk for poor outcomes. Perhaps as a result of an inadequate evidence base to inform medical decision making, studies across medical disciplines suggest that subspecialists, ObGyns, and maternal–fetal medicine (MFMs) specialists often offer patients conflicting advice about the safety of contraception options, medication teratogenicity, and risks associated with pregnancy.35, 36 Clinicians urgently need access to the highest quality evidence available to optimize the provision of disease-specific SRH care and counseling for patients with chronic diseases. For building a common evidence base for SRH care, multidisciplinary consensus statements should be developed under the aegis of medicine subspecialty and ObGyn/MFM professional organizations (Table 1). Consensus statements may present evidence for clinical management across a broad range of reproductive states for people with chronic diseases— especially diseases that are associated with severe maternal and fetal morbidity and mortality.37-39 Medicine subspecialists should not be expected to serve as the primary providers of patients' obstetric, contraceptive, or abortion care; thus, to meet patients' SRH needs, they must be able to collaborate closely with ObGyn/MFM experts. However, on a local level, some medicine subspecialists lack professional relationships with ObGyns/MFMs, and cannot easily refer patients with urgent SRH needs.14 In fact, patients express that their reproductive health providers and subspecialists rarely communicate or coordinate their SRH care. Some patients describe a “hot potato” phenomenon in which no clinician takes ownership of a reproductive health need, such as contraception provision or medication counseling during pregnancy.15 For example, an ObGyn or primary care physician may request that the subspecialist manages contraception because of concern that certain methods of contraception may exacerbate chronic disease (e.g., estrogen-containing methods in the case of prothrombotic disorders), although many subspecialists lack competencies in contraception care. For building collaborations across the medicine subspecialties and ObGyn/MFM, barriers to cross-disciplinary relationship-building must be dismantled.40 Leaders at the institutional and practice levels must also commit to building initiatives that bridge SRH care across medicine subspecialties and ObGyn/MFM (Table 2). Sexual and reproductive health care should not be a niche competency. Gaps in SRH training and continuing medical education compromise subspecialty clinicians' abilities to provide high-quality SRH counseling for patients with chronic diseases.16 At present, “women's health” is a focus of only 6% of the 240 questions on the American Board of Internal Medicine (ABIM) certification exam.41 A survey of U.S. internal medicine residency program directors confirmed that 55% of residency programs offered no more than one opportunity for SRH training.42 It is unsurprising that many internal medicine trainees and newly certified internists feel unprepared and reluctant to manage basic aspects of patients' SRH care, including contraception provision or teratogenic medication counseling.43-45 In a national survey of cardiology fellows, fellows who had received some SRH training during residency were significantly more likely than other fellows to provide contraception counseling46 —underscoring that residency education in SRH exerts a powerful influence on downstream practice patterns. Reproductive health knowledge gaps that emerge during residency may be potentiated during medical subspecialty training.17, 40 In the afore-mentioned study of cardiology fellows, 78% of respondents had received less than 1 h of training about SRH during cardiology fellowship, and 62%–69% of fellows felt unprepared to counsel patients about prepregnancy planning or contraception care, respectively. Some subspecialties, such as Gastroenterology, have attempted to integrate women's health/SRH into required training milestones for fellows. However, as these milestones often do not require a demonstration of competency, it is understandable why a national sample of gastroenterology fellows reported that they had received inadequate SRH training during fellowship and did not feel competent to provide SRH to patients.47-49 More data are needed to clarify the extent to which SRH is integrated into fellowship training across the medicine subspecialties. But at present, it is possible for clinicians to enter independent practice without having received much formal reproductive health care training since their ObGyn rotations in medical school.50 Other practitioners who care for patients with chronic medical illnesses, such as advanced practice providers [(APP), e.g., physician assistants and nurse practitioners], may have even fewer training opportunities around SRH. SRH education should be integrated into all training programs (Table 3). As a starting point, residents, fellows, and APPs must learn how to assess people's reproductive goals and intentions as part of the standard clinical encounter.57 Trainees must also gain knowledge and/or skills in the following topics: (1) contraceptive counseling, (2) medication teratogenicity, (3) management of chronic disease during pregnancy, (4) referral options for abortion care; (5) safety of hormonal contraception and hormone replacement therapies, particularly for patients with relative or absolute medical contraindications58; (6) referral options for infertility; (7) transgender health and medicine; and (8) guideline-concordant screening for sexually transmitted infections among patients, especially for patients who are symptomatic.44, 59, 60 Specialty and subspecialty certification programs should augment the minimum standards for trainees' competencies in SRH across all US-based training programs with measurable competency standards. Clinicians should be trained in counseling approaches that prioritize patients' individual values and reproductive autonomy, including shared reproductive decision making. Medicine subspecialists describe that they are unsure how to initiate conversations about family planning, how to efficiently integrate these discussions within a clinic visit, and even how frequently they should address family planning with patients.14 Some subspecialists also choose not to discuss pregnancy termination because they are personally uncomfortable with the topic of abortion or fear legal consequences,14 and this phenomenon will likely be potentiated in the wake of the Dobbs versus Jackson decision that overturned Roe versus Wade.61 However, people feel that their SRH needs are best met when their clinicians are supportive, compassionate, and recognize their concerns; they feel that their needs are not met when their clinicians are directive, overly medicalized, or do not consider their priorities in reproductive decision making.26, 27, 29, 62 Clinicians control access to reproductive services and are thereby positioned to support or undermine peoples' abilities to actualize their reproductive goals. However, clinicians' and patients' perceptions of social and normative behaviors and decision frameworks may differ.63 For example, some people with severe illnesses will be willing to risk their lives to experience pregnancy,64 whereas others will wish to terminate an undesired or high-risk pregnancy. Such perspectives are reflective of a person's basic human right to make reproductive decisions that are best for them, and clinicians should not consider such decision making to be an indicator of noncompliance, lack of foresight, or irresponsibility.10 Indeed, some clinicians' negative attitudes about a person's “fitness” to reproduce may be actualized disproportionately against members of groups that are historically marginalized from medical care.11, 33, 65 Narrative data overwhelmingly describe how Black people and other people of color, who are LGBTQIA+, poor, and/or who have chronic or stigmatizing diseases such as substance use disorders or HIV experience negative and demeaning encounters in their receipt of reproductive health care—including the perceptions that their clinicians withhold relevant information from them if they do not agree with their healthcare decisions, or discourage them from pursuing desired pregnancies or pregnancy terminations.66-71 Such experiences may prevent patients' inabilities to realize their reproductive priorities and preferences. We, therefore, recommend that clinicians engage patients with cultural humility, in which they seek to understand and acknowledge historical and sociocultural contexts and people's lived experiences related to reproduction and establish a groundwork for trust and respect.32 Curriculum-based interventions that include completion of implicit association tests of unconscious racial bias, training to understand and appreciate cultural customs, and education about racial disparities in health care is critically important to reduce implicit racial bias among medical students and physician trainees, and should be imbued in medical school curricula and training programs.72 One goal of training in cultural humility and bias reduction in the reproductive health care context is to prepare clinicians to engage in shared reproductive decision making, in which clinicians present balanced and personalized health information and support a person's ability to arrive at decisions that are best aligned with their needs, values, and preferences irrespective of the clinicians' judgments and norm perceptions. Simple, open-ended questions may provide a good starting point for family planning care. The following questions have been developed for use in ambulatory settings. For example, clinicians can integrate the Pregnancy Attitudes, Timing, and How Important is Prevention (PaTH) questions57 into practice: (1) Do you think you might like to have (more) children at some point? (2) If so, when do you think that might be?, and (3) How important is it to you to prevent pregnancy (until then)? One Key Question73 might also be used to elicit patients' pregnancy intentions: Would you like to become pregnant in the next year? The subspecialist may consider additional language to help to gauge a patient's understanding of their health risks and to facilitate informed reproductive decision making: (1) What is your understanding of how your (disease) might impact your (reproductive goal or preference)?, (2) Can I share with you what I know about (your disease and/or medications) and how it might affect your (reproductive preferences or decisions)?, and (3) I hear your reproductive goal is (x). Did I get that right? I want to help you to meet your goals. Patients may lack both basic and disease-specific knowledge about SRH, from the general efficacy of contraceptive methods or the importance of using safe medications during pregnancy to control disease activity74, 75—which may also reflect their clinicians' lack of knowledge. In fact, patients report that they frequently receive conflicting and inaccurate advice across information sources, including online resources, about critical topics such as medication safety during pregnancy and lactation.76-78 In addition, descriptive studies overwhelmingly indicate that people who are socially or historically marginalized and/or or have chronic medical illnesses experience negative SRH care encounters that prevent their access to the information, services, and supports needed to make and execute value-concordant reproductive decisions.79, 80 Misinformation or a lack of access to accurate information undermines a person's ability to make informed decisions around family planning and may cause them to inadvertently take unacceptable risks. People with chronic diseases, regardless of the diagnosis, desire information that is accurate, supports their self-efficacy to make reproductive decisions that are best for them, and balances risk information with reassurance and optimism.26, 27, 29, 40 People with chronic conditions should be provided with the information needed to make informed and values-concordant decisions about SRH (Table 4). Black, American Indian, and Alaska Native birthing people experience maternal and fetal death at rates two to three times higher than other people—a phenomenon that arises from a disproportionate burden of chronic diseases, the generational effects of structural racism, and inequities in health care access and quality.82, 83 Studies indicate that people who have chronic medical illnesses are more likely to perceive discrimination, loss of autonomy, and/or mistreatment in their maternity health care encounters with clinical staff, but these effects are compounded among patients who additionally identify as Black or Hispanic race as compared to White.84, 85 While these richly descriptive studies demonstrate potential mechanisms between people's experiences of racism and mistreatment and adverse pregnancy and perinatal outcomes, rigorous measures are needed to evaluate the linkages between people's reproductive health experiences and their outcomes and to serve as quality measures of patient-centered, equitable reproductive health care. Several candidate measures are currently in development. For example, a measure capturing obstetric racism might help to explain its impact on the health care encounters, reproductive experiences, and well-being of Black birthing people.86 In addition, our team is developing a novel measure of reproductive autonomy in health care (RAH) to evaluate if the extent to which people perceive that their reproductive autonomy is supported or not supported by their clinicians influences whether they engage their clinicians in reproductive decision making, seek longitudinal care, or experience other outcomes related to health and well-being. Such data are essential to develop proactive interventions that improve health care delivery and prevent adverse outcomes. In this commentary, we propose strategies to enhance the reproductive health care of people with childbearing capacity who also have chronic medical conditions. While we focus on SRH care within the adult medicine subspecialties, the pediatric subspecialty model must be similarly interrogated to meet the SRH needs of adolescents and young adults with chronic diseases.6, 30, 87, 88 We acknowledge that each medical subspecialty will have specific strengths, challenges, and resources (or lack thereof) related to SRH provision. By providing a preliminary blueprint for a person-centered subspecialty medicine care model, we hope to stimulate discussion and debate about how best to build upon the common gaps and struggles in SRH provision across the medicine subspecialties to provide health care that enhances the reproductive lives and well-being of patients and their families. Mehret Birru Talabi's work was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (K23-AR075057) and the Robert Wood Johnson Harold Amos Medical Faculty Development Award. Lisa S. Callegari was supported by a VA Health Services Research and Development Service Career Development Award and Merit Review Award. Traci M. Kazmerski's work was supported by grants from the Cystic Fibrosis Foundation. Tamar Krishnamurti's work was supported, in part, by the National Institute of Mental Health and the Kuno Award for Applied Science for Social Good from the S&R Foundation. Sonya Borrero's work was supported, in part, by the National Institute on Minority Health and Health Disparities and the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The author(s) declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.