Summary¹

A recent World Economic Forum report revealed that although women generally outlive men, they spend approximately 9 more years with suboptimal physical, social, and psychological well-being, which can hinder their ability to actively participate and contribute in the home, workforce, and community and lead to diminished earning prospects. The report also highlights that when evaluating the global burden of disease, 47 percent of conditions disproportionately affect women, 4 percent affect them differently, and 5 percent are exclusive to them. The remaining 43 percent of conditions also contribute to the global burden of disease in women. In a concluding observation, the report stated that the health of women is not an isolated concern; it serves as a foundation for societal welfare and advancement. Improved women’s health and well-being have a cascading effect that touches families, communities, and nations.

In the United States, chronic conditions are the leading causes of illness and death and are associated with significant social and economic burden; conditions such as cardiovascular disease, stroke, and Alzheimer’s disease were among the top five leading causes of death in women in 2021. In comparison to men, women experienced a 1.3–2-fold prevalence of arthritis, depression, Alzheimer’s disease, and asthma and up to 11-fold for other conditions, such as osteoporosis. Differences in health conditions that affect

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¹ This summary does not include references. Citations for the discussion presented in the summary appear in the report chapters.

both women and men are attributable to biological differences and structural, social, and cultural factors that intersect with gender and can produce varied exposures and experiences. These experiences ultimately affect diagnosis, treatment, prevention, and management of chronic conditions in women across the life course.

Data on female-specific and gynecologic conditions are limited and have wide prevalence ranges, which represent the challenges in measuring the impact of certain chronic conditions in women. Race, ethnicity, sexual orientation, gender identity, and rurality exacerbate that impact.

Biological (sex) and social/environmental (gender) factors define two major classes of relevant variables differentially influencing women and men and it is often difficult to separate their effects. Ongoing research aims to identify the underlying biological mechanisms to determine strategies for diagnosing, treating, preventing, and managing chronic conditions in women. However, the basic etiology of several chronic conditions remains unknown. Research on the structural and social determinants of health and their effect on chronic conditions in women has expanded over the years, yet several significant gaps remain in understanding how these factors contribute to these conditions’ development, progression, and management. Addressing these gaps is crucial for developing more effective and equitable health interventions and policies.

Congressional leaders have raised concerns about the knowledge and gaps regarding chronic conditions in women. This resulted in a House and the Senate appropriations request for National Institutes of Health (NIH) Office of Research on Women’s Health (ORWH) to convene a conference in 2021 titled Advancing NIH Research on the Health of Women, with chronic debilitating conditions as one of its three focus areas. The resulting report highlighted gaps and opportunities in research pertaining to the three focus areas² and specifically challenges in defining these conditions in women and developing a framework for considering them.

CHARGE TO THE COMMITTEE AND APPROACH

In 2022, NIH ORWH requested the National Academies of Sciences, Engineering, and Medicine (National Academies) to produce a report describing gaps in the science on chronic conditions in women and proposing a research agenda for the future. The National Academies convened an ad hoc interdisciplinary committee to review the literature on chronic debilitating conditions that affect women. The Statement of Task (SOT)

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² The three focus areas are: (1) rising rates of maternal morbidity and mortality; (2) rising rate of chronic debilitating conditions in women; and (3) stagnant cervical cancer survival rates.

guiding the study charged the committee to review the literature on chronic conditions specific to women, with attention to the epidemiology, contributing factors, prevention, diagnosis, and treatment and, to the extent possible, the social and economic impact on women. The SOT also tasked the committee with describing how developing and accumulating chronic debilitating conditions in women are influenced by factors such as menopause, aging-related skeletal muscle dysfunction, and frailty. The SOT also tasked the committee with describing how social determinants of health such as gender, race, ethnicity, socioeconomic status, sexual orientation, gender identity, and rurality influence chronic conditions in women. Last, the SOT tasked the committee with describing gaps in evidence and providing a research agenda for the future.

COMMITTEE’S APPROACH TO ADDRESSING ITS CHARGE

Given the number and diversity of chronic conditions affecting women and the timeframe for conducting its work, the committee identified a select number of conditions to review. The committee notes that, in the absence of a formal or consistent definition or classification of chronic debilitating conditions, it based its selection on informed judgment. In this report, the committee defines “woman” to include any individual who considers themselves to be a woman or was assigned female sex at birth. This inclusive definition recognizes individuals who have been affected by a set of biological and social variables that influence women differently than men.

As a first step, the committee turned to the SOT for direction. The SOT specifies female-specific and gynecologic conditions and aging-related skeletal muscle dysfunction. The committee then reviewed the ORWH framework, which includes 44 chronic conditions arrayed in four categories: one includes female-specific conditions; two include conditions with a higher prevalence or higher morbidity among women than men; and one lists understudied conditions. In lieu of seeking a specific definition for “chronic debilitating conditions,” the committee chose to remove the term “debilitating,” given that it may negate the experiences of women who live with chronic conditions and have developed coping mechanisms that help them function more fully. Therefore, in this report, the committee refers to “chronic conditions in women.”

Based on the SOT, ORWH framework, and committee member expertise, the committee selected the conditions to review (see Table S-1) as illustrative of female-specific and gynecologic conditions and those that predominately impact or affect women differently.

TABLE S-1 Chronic Conditions Reviewed in the Report

The committee considered several questions to identify the evidence base in the literature on chronic conditions in women. Throughout its review, the committee aimed to identify the knowledge gaps in basic science, preclinical research, clinical studies, and population-based research related to chronic conditions that affect women and any translational efforts to apply research findings to clinical practice to improve health outcomes in women experiencing them.

The evidence presented in this report highlights significant gaps in knowledge needed to understand the biological, structural, and social factors that influence the development and trajectory of chronic conditions in women across the life course. These gaps hinder efforts to improve women’s health by diagnosing, treating, preventing, and managing these conditions and reducing disparities.

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³ For the purposes of this report, the committee chose to refer to female-specific and gynecologic conditions. Female-specific conditions include infertility and urinary incontinence associated with female organs and systems, and post-partum depression. Gynecologic conditions are those related to the reproductive organs and systems. Conditions that occur during pregnancy were highlighted as well and how they may be linked to the development of other chronic conditions included in this report.

Animal models have given rise to a better understanding of sex differences in chronic conditions and uncovered novel diagnostic and therapeutic approaches. The realm of basic science has made significant progress in elucidating critical distinctions in chromosomal sex and gonadal hormone differences for certain chronic conditions. However, further investigation is warranted to deepen that understanding. Furthermore, women’s multiple social identities intersect with experiences that are shaped by structural and social determinants of health and influence health behaviors and the onset, characteristics of, and progression of chronic conditions. The health care system also plays a role in the disparities and inequities women with chronic conditions experience. The disenfranchisement women feel when clinicians dismiss or minimize symptoms can lead to misdiagnosis, missed diagnosis, and poorer health outcomes when women defer care or are denied appropriate care.

Data inclusion and reporting in national surveillance and other population-based studies are inconsistent on the impact of conditions that significantly affect women. Data are also lacking on the differences in the impact of chronic conditions by age, gender, race, and ethnicity.

The research base on female-specific and gynecologic conditions is limited to those reviewed, so the understanding of their etiology, diagnosis, treatment, and prevention is incomplete. Furthermore, advances made in understanding chronic conditions that are predominant in women or affect women differently has largely been shaped by research focused on men, with conclusions often applied to women. For some conditions, this can result in inappropriate diagnosis and treatment in women.

Structural and social determinants of health factors play a significant role in modifying the risk of developing chronic conditions and their consequences. The data have several limitations on how these factors shape the health of different groups of women.

Many women will experience multiple chronic conditions at the same time, but research often focuses on a single condition, creating gaps in knowledge about how best to diagnose and care for them. Significant challenges exist in translating basic science research into practice, but various approaches can be used to engage patients and communities in designing research to improve the relevance, acceptability, and centering of women’s needs.

A RESEARCH AGENDA FOR THE FUTURE

The committee identified key research gaps that NIH and other relevant agencies that fund research should support to advance the understanding of chronic conditions in women. Based on the committee’s conclusions, it recommends the following areas of research to help fill these gaps.

The Impact of Chronic Conditions in Women

Several challenges arise in quantifying and measuring the impact of chronic conditions in women (Chapters 3 and 4). Impact is difficult to measure because these conditions can be difficult to diagnose, have wide variability in diagnostic approaches, have an unknown etiology, or have high diagnostic misclassification resulting from their association with multimorbidity and similarities to other conditions. Quality of life in women living with chronic conditions has also been challenging to measure. Economic burden is another measure for which little knowledge exists other than that chronic conditions in women contribute to substantial health care costs and have a significant effect on a woman’s productivity at work and home. However, these findings are based on limited data, much from studies of single conditions.

Conclusion 1: Based on a paucity of data, chronic conditions continue to significantly have an impact on women. Limited data hinders an in-depth understanding of the burden that chronic conditions have on women. Many chronic conditions are understudied, and measurement and diagnostic challenges leads to underreporting and inaccurate findings.

Recommendation 1.1: NIH and other relevant research agencies should support research to improve estimates of the impact of chronic conditions in women.

Specifically, research is needed to more accurately:

1.1a. Diagnose and reduce misclassification of female-specific and gynecologic conditions (e.g., endometriosis, vulvodynia).

1.1b. Diagnose chronic conditions that predominantly impact or affect women differently (e.g., chronic pain, myalgic encephalomyelitis/chronic fatigue syndrome, and autoimmune diseases).

1.1c. Characterize differences in chronic condition presentation by gender, race and ethnicity, and the various structural and social determinants that these women experience or are affected by.

1.1d. Assess the economic impact of chronic conditions in women (both direct and indirect costs) and quality of life.

Many of the surveillance systems for chronic conditions noted in this report do not capture or track female-specific and gynecologic conditions. Assessing the impact of chronic conditions captured in data sources, especially for those not in national surveillance, claims data, or population-based studies, is challenging because of limited sample sizes and incomplete representation of all populations and subpopulations these conditions affect.

Even when national databases or studies report on chronic conditions, many do not report prevalence by age group, gender identity, race, ethnicity, or sexual orientation, leading to inaccuracy and underreporting and making it difficult to understand the variation that occurs among groups. Furthermore, national surveillance data and population-based studies have failed to disaggregate data by gender, race, ethnicity, or sexual orientation. Black and African American, Hispanic/Latina, American Indian and Alaska Native, Asian American, and Native Hawaiian and Pacific Islander women are heterogenous groups. Studies of impact lack the ability to consider the differences in condition/disease presentation among these groups and subgroups.

Conclusion 1.2: Comprehensive and accurate disease surveillance systems and population-based studies play an important role in providing data on chronic conditions and disease risk factors, as well as on disparities in the incidence and prevalence of conditions and their distribution by race, ethnicity, gender, age, and social determinants of health. Current data systems fail to collect data on a number of female-specific and gynecologic conditions or publish disaggregated data on chronic conditions that predominantly impact or affect women differently.

Recommendation 1.2: To improve data collection on female-specific and gynecologic chronic conditions and those that predominantly impact or affect women differently, NIH and other relevant research agencies should support national surveillance and population-based studies to expand data collection activities to include female-specific and gynecologic conditions and female-predominant conditions not currently included.

1.2a. Results from data collected on female-specific and gynecologic conditions and chronic conditions that predominantly impact or affect women differently should be provided and disaggregated by gender, race and ethnicity, sexual orientation, and other social factors.

Understanding the Biology and Pathophysiology of Chronic Conditions in Women

Understanding the biological mechanisms that contribute to chronic conditions is important for developing approaches to diagnose, treat, and prevent female-specific and gynecologic conditions and those that predominantly impact or affect women differently. Research is progressing in areas such as understanding how sex differences, including chromosome and hormonal effects, affect the development of chronic conditions in women. How estrogens affect chronic conditions in women are not well known, and the interaction of sex chromosomes and gonadal hormones on phenotypical expression of chronic conditions is poorly understood. Additionally, the

role of other hormones in the development of chronic conditions need to be further identified, for example, how changes in hormones can affect the onset of certain chronic conditions. More knowledge about the role sex differences play in chronic condition etiology is essential for understanding the targets for which novel therapies and treatments can be developed.

Conclusion 2: Some progress has been made in understanding the pathophysiology and biological mechanisms of chronic conditions in women, but further progress is needed to better support prevention, diagnosis, and treatment of these conditions.

Recommendation 2.1: To further elucidate the pathophysiology and biological mechanisms underlying chronic conditions that predominantly affect or impact women differently, NIH and other relevant research agencies should support research to understand the independent and interacting roles of gonadal hormones and sex chromosome genes causing sex differences and chronic conditions affecting women more than men.

The understanding of the etiology of several female-specific and gynecologic conditions and conditions that predominantly affect or impact women differently is incomplete. Some understanding indicates that gynecologic conditions and pain-related chronic conditions share similar common inflammatory and autoimmune etiologic pathways. However, those pathways are not well understood in the context of the environment that women live in.

Recommendation 2.2: To develop a better understanding how inflammatory and immune system pathways affect the development of chronic conditions in women, NIH and other relevant research agencies should support research to:

2.2a. Understand the basic etiology of female-specific and gynecologic chronic conditions (e.g., dysmenorrhea, uterine fibroids, nonmenstrual chronic pelvic pain, and pelvic floor disorders).

2.2b. Elucidate the role inflammation and immune system pathways and environmental exposures play in the etiology of chronic conditions in women.

2.2c. Elucidate how epigenetic alterations change gene expression as a consequence of exposures (e.g., diet, stress, environmental) to alter cellular function and contribute to the etiology of chronic conditions in women.

2.2d. Understand the etiological mechanisms of chronic conditions that include pain as a component of the condition’s presentation (e.g., chronic pain, migraines, myalgic encephalomyelitis/chronic fatigue syndrome, and fibromyalgia).

Research on genetic variations in chronic conditions in women can further the understanding of their genetic underpinnings. Research has not yet discovered the genetic drivers of varied experiences of chronic conditions, but that would inform novel treatment targets.

Recommendation 2.3: To identify the genetic drivers of chronic conditions in women, NIH and other relevant research agencies should support research to better understand the genetic drivers of subtypes and symptom heterogeneity of female-specific and gynecologic conditions (for example, genome-wide association studies of endometriosis and chronic pelvic pain) and ensure that databases used in such studies are diverse given the observation of subpopulation differences.

Animal models and preclinical studies can provide valuable insights into the biological mechanisms and potential novel therapeutics and treatments for chronic conditions in women.

Recommendation 2.4: To address the lack of suitable animal models and other preclinical systems for exploring the biological mechanisms underlying chronic conditions in women, NIH and other relevant research agencies should support research to:

2.4a. Develop or improve experimental animal models to gain better insights into biological and physiological processes that lead to female-specific and gynecologic conditions such as disruptions in menstruation, endometriosis, chronic pelvic pain, and infertility.

2.4b. Develop in vitro models, cell systems, organoid systems, and fluidic models (system on a chip) to better understand the pathobiology of chronic conditions.

2.4c. Utilize systems biological analysis (“omics,” etc.) to understand the interactions of genomes, transcriptomes, proteomes, and epigenomes contributing to chronic conditions.

2.4d. Improve understanding of how sex hormones, sex chromosome genes, and their epigenetic regulators affect the etiology and progression of chronic conditions.

2.4e. Improve understanding of the molecular mechanisms/consequences of prolonged inflammation and the prenatal and maternal environments which alter cellular function and affect chronic conditions.

Female-Specific Factors in the Development of Chronic Conditions

Reproductive milestones are key factors influencing the development of chronic conditions in women. Deviations in milestones, such as early menarche, a shorter reproductive window (including early menopause),

and hormonal fluctuations play a role in conditions such as endometriosis, depression, cardiovascular disease, stroke, and HIV, but their role is less understood for other chronic conditions. Other female-specific factors, such as the number of children delivered, breastfeeding, adverse pregnancy outcomes, and oral contraceptive use, can affect chronic conditions, including their development later in life. However, significant gaps in knowledge exist about how these factors affect chronic conditions in women.

Conclusion 3: Reproductive milestones (menarche, pregnancy, menopause) impose dramatic changes in a women’s body and functioning and can influence the risk of developing certain chronic conditions across the life course.

Recommendation 3.1: To better understand the exact mechanisms hormonal fluctuations play in the development of chronic conditions in women, NIH and other relevant research agencies should support research to:

3.1a. Elucidate the importance of age of menarche in the development of chronic conditions.

3.1b. Understand the role of menstrual cycle regularity/irregularity, length, and menstrual cycle phases in the development of chronic conditions over the life course.

3.1c. Understand how the length of the reproductive window (fertile years), parity, and breastfeeding influence the development of chronic conditions in women.

3.1d. Understand the link between adverse pregnancy outcomes such as gestational diabetes and hypertensive disorders of pregnancy and the development of chronic conditions later in life.

3.1e. Examine the role of migraines during pregnancy and their link to negative pregnancy outcomes.

3.1f. Explore the effect of exogenous hormones in the development of chronic conditions.

3.1g. Understand the effects of premature menopause (<40 years) and early menopause (40–44 years), both spontaneous and iatrogenic (surgery, chemotherapy, or radiotherapy), on the risk of chronic conditions.

3.1h. Better understand and characterize reproductive milestones in racial and ethnic groups of women as well as lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA+) women.

The decline and change of hormone levels during menopause and perimenopause has significant effects, such as the symptoms many women

experience, and research has yet to identify the exact biological pathways that cause these effects. Research has identified the reduction in estrogen levels in postmenopause as an important contributor to developing specific chronic conditions, most notably osteoporosis, cardiovascular disease, and stroke. However, its influence on other chronic conditions, such as musculoskeletal conditions, including sarcopenia, is poorly understood. One challenge to research in this area is how best to evaluate menopause given the heterogeneity of symptoms and reliance on symptom reporting and hormone level tests, which can fluctuate. Despite advancements in the treatment options available for menopausal symptoms, not all women can benefit from them.

Recommendation 3.2: To develop new and better approaches for addressing the symptoms that affect women during perimenopause, menopause, and postmenopause, NIH and other relevant research agencies should support further research that aims to:

3.2a. Understand the biological mechanisms underlying the timing and the manifestation of menopausal symptoms, including vasomotor symptoms.

3.2b. Improve methods of evaluating and diagnosing perimenopause and menopause.

3.2c. Investigate and evaluate the effectiveness of a range of management and treatment options for treating menopausal symptoms, including pharmacological and nonpharmacological therapies, and preventing future chronic conditions.

3.2d. Examine the relationship between menopause and the risk of developing or exacerbating chronic conditions. Special attention should be given to musculoskeletal conditions that lead to frailty in women.

3.2e. Investigate preventive measures for mitigating the effect of menopause on chronic conditions.

Disparities and Life Experiences

Disparities in chronic conditions in women with various social identities (e.g., race, ethnicity, sexual orientation, and gender identity) are pronounced yet still understudied. The research primarily examines differences in chronic conditions in women by social group identity but not how structural factors, such as discrimination, racism, sexism, ageism, and homophobia, and social determinants of health (e.g., economic stability, social isolation) intersect to contribute to disparities. The influence of structural and social determinants of health in the context of gender roles and cultural norms is poorly understood.

Conclusion 4: Structural and social determinants of health influence the development, progression, and management of chronic conditions in women.

Recommendation 4: To better understand how the structural and social determinants of health affect outcomes in women from various social identities, NIH and other relevant research agencies should support research to understand how multiple social identities (e.g., race and ethnicity, cultural norms, gender identity, sexual orientation) interact with structural and social determinants of health to influence chronic conditions in women across the life course.

Women who experience adverse childhood experiences, as well as sexual and physical trauma, and interpersonal violence throughout their lives, which are partially influenced by societal gender roles and expectations, are at increased risk of many chronic conditions.

Conclusion 5: Early-life experiences and societal gender expectations may expose women to traumatic events throughout their lives that can adversely affect their health.

Recommendation 5: Data regarding the link between life experiences and chronic conditions in women are not robust, and thus NIH and other relevant research agencies should support research to explore the role of traumatic experiences as risk factors in the development of chronic conditions throughout the life course.

Health-promoting lifestyle behaviors, such as physical activity, dietary behaviors, and other factors, are associated with a decreased risk of chronic conditions. Evidence indicates that structural and social determinants of health, such as the built and neighborhood environment, contribute to inequities in the ability to engage in health-promoting lifestyle behaviors and play a role in developing conditions, especially in racially and ethnically minoritized women. However, data regarding the link between lifestyle behaviors and chronic conditions in women are limited and not robust.

Conclusion 6: Lifestyle behaviors can decrease the risk of developing chronic conditions and chronic conditions can minimize the ability to engage in positive lifestyle behaviors. Lifestyle behaviors across the life course are not well studied in women.

Recommendation 6: To improve the understanding of the role of lifestyle behaviors on the development of chronic conditions in

women, NIH and other relevant research agencies should support research to:

6a. Investigate how health-promoting lifestyle behaviors influence chronic conditions in women and how the presence and effects of chronic conditions themselves can affect these behaviors.

6b. Understand how structural and social determinants of health interact with various lifestyle behaviors to influence prevention, development, and course of chronic conditions in women.

Diagnosis and Treatment

Women may exhibit differences in preclinical and clinical presentation of female-specific and female-dominant chronic conditions, and the failure to differentiate condition/disease presentation by sex and gender has contributed to significant morbidity and mortality from many chronic conditions. In addition, diagnostic tools and sex-specific biomarkers are lacking for certain chronic conditions, hindering the ability to accurately diagnose them.

Conclusion 7: Women may present differently than men for many chronic conditions which can lead to misdiagnosis or underdiagnosis. Diagnostic tools tailored to sex-specific differences are essential for accurately capturing how conditions manifest in women.

Recommendation 7: To improve early and accurate detection and diagnosis of chronic conditions in women, NIH and other relevant research agencies should support research to:

7a. Develop sex- and gender-specific diagnostic tools for conditions in which there are clear differences in the clinical presentation of diseases in women such as cardiovascular disease (e.g., no obstructive coronary artery disease, spontaneous coronary artery dissection).

7b. Develop diagnostic tools that can more accurately distinguish between chronic conditions that share similar symptoms (e.g., chronic pain, fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome).

7c. Explore a multilevel approach to the diagnosis of chronic conditions in women that includes identifying biological markers, developing diagnostic tools that capture variation in symptom manifestation and incorporate the lived experience, and engaging with health systems.

Multiple Chronic Conditions

Multiple chronic conditions have a significant effect on women, with evident gender differences in presentation of clusters of chronic conditions. However, research has actively prioritized the study of single diseases and

single-disease models. This has limited the understanding of the etiology, diagnosis, treatment, prevention, and care for women with multiple chronic conditions and the field of multiple chronic conditions as a whole.

Conclusion 8: Women tend to develop multiple chronic conditions over the life course. Animal and preclinical research has identified the role of aging- and inflammation-related mechanisms in the development of chronic conditions. In clinical research, studies of multiple chronic conditions have been hampered by a lack of standardized definitions and diagnostic approaches resulting in challenges in prevention and treatment.

Recommendation 8.1: To understand the cellular processes that have been postulated to be possible targets that could play a role in preventing or ameliorating multiple chronic conditions in women, NIH and other relevant research agencies should support research to:

8.1a. Understand the biological mechanisms involved in the development of multiple chronic conditions in women, including aging-related mechanisms and inflammation.

8.1b. Further investigate the role of cellular senescence in the development of multiple chronic conditions and how reversal or prevention of senescence, through the use of senolytic therapies, can potentially delay the development of age-related chronic conditions (e.g., cognitive decline, musculoskeletal loss).

8.1c. Develop animal models that examine the co-occurrence of specific chronic condition groups.

No standardized clinical definition or diagnostic criteria exist for multiple chronic conditions, leading to differences in measurement. In addition, tools often exclude female-specific and gynecologic conditions, leading to underreporting multiple chronic conditions and an incomplete understanding of multiple chronic conditions in women.

Recommendation 8.2: To improve the diagnosis of multiple chronic conditions in women, NIH and other relevant research agencies should support research to:

8.2a. Develop new measurement tools for multiple chronic conditions that include female-specific and gynecologic conditions to more fully understand the impact in women.

8.2b. Review and validate diagnostic or measurement tools for multiple chronic conditions to aid in the development of a standardized definition.

Recommendation 8.3: Since research approaches that use single-disease models hinder the ability to understand pathophysiology, treatment, prevention, and management of multiple chronic conditions in women, NIH and other relevant agencies should support:

8.3a. The development of research approaches that appropriately study multiple chronic conditions in women.

8.3b. Research that ensures the representation of women with multiple chronic conditions in research designs.

Clinical guidelines are typically designed to manage single conditions. Evidence-based guidelines are lacking for treating and managing the complex interactions between conditions. Interactions of specific treatments, such as polypharmacy, can contribute to developing or exacerbating other chronic conditions. The design of treatment and management approaches should be informed by the experiences of women living with multiple chronic conditions.

Recommendation 8.4: To improve the treatment and care of women with multiple chronic conditions, NIH and other relevant agencies should support research to:

8.4a. Develop evidence-based treatment and management guidelines for women with multiple chronic conditions.

8.4b. Examine negative effects of polypharmacy that can contribute to developing other chronic conditions.

8.4c. Design tools that incorporate measures of daily functioning and quality of life to improve the assessment of the impact of multiple chronic conditions in women.

8.4d. Design and test integrated and longitudinal models of care for women with multiple chronic conditions.

Inequities and Women-Centered Research

Inequities in care for women can stem from the experience of gender biases resulting from discrimination and stigma in clinical care settings. Structural sexism also can significantly influence health policies, including access to care and research funding. These factors affect health care access and quality and result in dismissing symptoms, which leads to underdiagnosis, misdiagnosis, and differential outcomes in treating and managing chronic conditions in women. For example, women’s experiences of symptoms, such as pain, are often underestimated compared to men, so women are less likely to receive proper treatment. Stigma and discrimination about conditions such as HIV and substance use disorder lead to women being

reluctant to seek care and preventive services. Incorporating patient-centered outcomes and the patient’s voice and lived experience can center research on women and can enhance the quality of care women receive.

Conclusion 9: A health equity lens is important for improving health care access, care, and outcomes including patient-centered outcomes in women.

Recommendation 9: To address inequities that continue to exist for women in the health care setting, NIH and other relevant research agencies should provide research support to:

9a. Elucidate gender differences in access and use of health care services, taking into consideration the effects of structural sexism on health policies, inequities in health resource distribution, and social determinants of health.

9b. Develop methods for assessing discrimination (e.g., sexism, racism, ageism, and homophobia) encountered by women when accessing health care services for chronic conditions.

9c. Assess and validate diagnostic tools for appropriate use in diverse racial and ethnic groups.

Despite progress regarding the inclusion and representation of women in various fields of research, the evidence on chronic conditions points to a lack of including women from different racial and ethnic, gender identity, and sexual orientation backgrounds in research. A lack of strategies that involve women and their communities in research has led to not understanding outcomes for and the unique health needs of these women.

Conclusion 10: Women-centric research strategies can help ensure that research activities address the unique health needs of women, leading to more effective and equitable health outcomes.

Recommendation 10: NIH and relevant funding agencies should support research that is women-centric. Studies should account for sex and gender and include a diversity of women in the research process. Researchers should:

10a. Recruit women from different racial, ethnic, gender identity, age, and sexual orientation backgrounds and underserved rural populations to better define the full spectrum of preclinical and clinical disease presentation.

10b. Involve women with multiple chronic conditions, including their communities, in the design, implementation, and dissemination of research findings.

10c. Use novel techniques for engaging and incorporating women who have yet to seek care due to obstacles in accessing health care services or because their conditions are in a preclinical stage.

10d. Use community-based research approaches (e.g., community engagement and community-based participatory research) to improve relevance, acceptability, and centering of women’s needs and outcomes.

10e. Account for sex and gender in studies where appropriate and standardize measures for capturing these variables accurately.

The committee’s research agenda aims to bridge gaps in the scientific understanding of the etiology of chronic conditions and the interface of biological and social factors that influence their trajectory. Ultimately, research outcomes would lead to greater diagnostic rigor, better data on the impact of these conditions, and more effective therapeutic interventions and woman-centered care.

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