WASHINGTON — Significant gaps in what is known about chronic conditions that are specific to women, predominantly impact women, or affect them differently — such as endometriosis, pelvic floor disorders, migraines, and chronic fatigue syndrome — hinder diagnosis, treatment, and prevention, finds a new report from the National Academies of Sciences, Engineering, and Medicine. The report calls on the National Institutes of Health and other relevant federal research agencies to enhance their research efforts to better understand chronic conditions in women.

Chronic conditions were among the top five leading causes of death in women in 2021. Compared to men, women experience a higher prevalence of many chronic conditions, including Alzheimer’s disease, depression, and osteoporosis. Although women on average live longer, chronic diseases may diminish women’s quality of life for years when compared with men. Chronic conditions in women contribute to substantial health care costs and have a significant effect on women’s productivity at work and at home — though research has yet to fully measure the impact.

For many chronic conditions, research so far has not explained why women are more commonly affected or are affected differently — hindering diagnosis, treatment, and prevention. The underlying causes of many of these conditions also remain unknown. The report says national surveillance systems and population studies inconsistently report data on conditions affecting women. Both biological factors (such as the age of a first menstrual period) and social factors (such as dismissal of women’s symptoms by clinicians or structural inequities) can influence how women are treated and how they experience these conditions throughout the course of their lives. These factors are not well understood independently or how, in aggregate, they impact disease progression.

“Advances in our understanding of conditions like Alzheimer’s, heart disease, and even chronic pain have largely been shaped by research focused on men. At best, this means we don’t fully understand how these conditions affect women — but at worst, it can mean a misdiagnosis, medical error, or inappropriate treatment,” said Eve Higginbotham, chair of the committee that wrote the report, and professor and former vice dean for inclusion, diversity, and equity of Penn Medicine and senior fellow of the Leonard Davis Institute for Health Economics at the University of Pennsylvania. “This is not the first report from the National Academies to assert that women’s health is understudied. It is long overdue for federal agencies to intentionally commit to a new research agenda that will finally improve our understanding of chronic conditions in women.”

“It is clear that the status quo in research on chronic conditions in women is not acceptable, as it is not meeting patients’ needs and is holding back efforts to achieve health equity,” said Victor J. Dzau, president, National Academy of Medicine. “Enhanced research efforts would improve diagnosis and care, and spur a wave of new advances in areas of women’s health that have been chronically underfunded and ignored.”

The report recommends NIH and other federal agencies pursue research in areas where there are significant knowledge gaps.

Improving Diagnostic Tools for Women

The symptoms of chronic conditions and the way these diseases present in women not only differ widely from men but also manifest differently among women. For example, women often experience different heart disease symptoms than men, and tools used to diagnose heart issues in men may not apply to the ways the disease presents in women, leading to misdiagnosis. The report says the lack of knowledge about chronic condition presentation in women has contributed to significant morbidity and mortality.

Research to improve early and accurate detection and diagnosis of chronic conditions in women should be pursued by NIH. This research should include developing diagnostic tools for chronic conditions such as endometriosis — for which women often face a seven-year delay in diagnosis — or where there are clear differences in how women symptomatically present versus men. Research should also seek tools that can better distinguish between chronic conditions that share symptoms — for example, between chronic pain and fibromyalgia.

Understanding Female-Specific Factors

Reproductive milestones are key factors specific to females that are known to influence the development of chronic conditions over the course of women’s lives. The report says research is needed to better understand these reproductive milestones and hormonal fluctuations — including the age at which the first period begins, the role of menstrual cycle length and regularity, fertile years, adverse pregnancy outcomes, and premature menopause.

To develop new and better approaches for addressing menopause and perimenopause symptoms, research should also pursue an improved understanding of their underlying causes and investigate new treatment options and preventive measures.

Understanding the Biology of Chronic Conditions in Women

Understanding the biological mechanisms that contribute to chronic conditions is key for diagnosing, treating, and preventing them. While research in some areas is progressing — for example, in how hormones and chromosomal differences impact chronic conditions in women — research elsewhere is not, says the report.

NIH research should aim to understand the independent and interacting roles of hormones and sex chromosome genes, and how these factors can lead to chronic conditions that affect women more than they affect men. The report also recommends research to investigate inflammatory and immune system pathways and the development of chronic conditions — for example, to discover the basic cause of conditions such as uterine fibroids or pelvic floor disorders. The role of environmental exposures, genetic drivers, and the mechanism by which pain becomes a symptom should also be studied. In addition, NIH should address the lack of suitable animal models for gynecologic conditions and other preclinical research on biological mechanisms.

Multiple Chronic Conditions

Women are more likely than men to have multiple chronic conditions at the same time, but most research prioritizes studying individual diseases, or has systematically excluded women with multiple chronic conditions from participating in studies. This has limited our understanding of how to prevent, diagnose, treat, and care for multiple conditions in women. Research should better illuminate the root causes of multiple chronic conditions. Cellular processes such as inflammation or cell aging, for example, could be possible targets for preventing or ameliorating chronic conditions. The report says research should develop guidelines for managing multiple conditions over the long term, improving coordination of care, as well as examine issues like the negative effects of taking multiple medications.

The Impact of Chronic Conditions in Women

Challenges remain in quantifying and measuring the impacts of chronic conditions on women, in part because such conditions can be difficult to diagnose, the report says. Economic burdens in particular are not well understood, though it is clear that health care costs are substantial — both in terms of the direct cost to an individual patient, and to society.

Research is needed to more accurately diagnose and reduce the misclassification of female-specific conditions, such as endometriosis or vulvodynia, and chronic conditions that predominantly affect women, such as autoimmune diseases. The report also recommends that national surveillance and population-based studies include chronic conditions specific to women or more common in women to improve estimates of the burden of these conditions.

Early Life Experiences, Lifestyle, and Disparities

The report says that women who experience adverse childhood experiences, sexual and physical trauma, and violence — all of which are influenced by the societal roles and expectations placed on women — face a higher risk of chronic conditions. Research should examine the link between these life experiences and chronic conditions in women.

Research should also investigate how lifestyle behaviors such as exercise and diet influence prevention, development, and progression of chronic disease, which are not well studied in women specifically.

Inequities and Supporting Gender-Centered Research

Inequities in women’s health care can stem from bias, discrimination, and stigma in medical treatment. For example, gender-based underestimation of pain continues to be an ongoing issue in clinical settings, as does medical “gaslighting” in cases of diagnostic uncertainty. Research is needed to unpack the complexities of gender differences in health care, and develop better ways of assessing discrimination and mitigating bias. The report also recommends researchers change recruitment methods, involving more women in research, and improving how sex and gender are captured in studies.

Undertaken by the Committee on a Framework for the Consideration of Chronic Debilitating Conditions in Women, the study was sponsored by the U.S. Department of Health and Human Services.

The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, engineering, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.

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