Advancing Research on Chronic Conditions in Women (2024)
Chapter: Front Matter
Consensus Study Report
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COMMITTEE ON A FRAMEWORK FOR THE CONSIDERATION OF CHRONIC DEBILITATING CONDITIONS IN WOMEN
EVE J. HIGGINBOTHAM (Chair), Vice Dean, Inclusion, Diversity and Equity; Senior Fellow, Leonard Davis Institute of Health Economics; Professor of Ophthalmology, Scheie Eye Institute, Perelman School of Medicine, University of Pennsylvania
ARTHUR P. ARNOLD, Distinguished Research Professor, Department of Integrative Biology & Physiology, University of California, Los Angeles
CYNTHIA M. BOYD, Director, Division of Geriatric Medicine and Gerontology, Professor of Medicine, Johns Hopkins Bloomberg School of Public Health
NKECHI T. CONTEH, Attending Psychiatrist, Department of Psychiatry, Boston University Medical Center; Program Director, Boston University Medical Center Psychiatry Residency Program; Assistant Professor, Boston University School of Medicine
KRISTINE Y. DELEON-PENNELL, Associate Professor, Department of Medicine, Division of Cardiology, Medical University of South Carolina; Research Health Scientist, Research Service, Ralph H. Johnson VA Medical Systems
ERICA E. MARSH, Professor and Vice Chair, Department of Obstetrics and Gynecology, S. Jan Behrman Collegiate Professor of Reproductive Medicine; Chief, Division of Reproductive Endocrinology and Infertility, University of Michigan
STACEY A. MISSMER, Professor of Obstetrics and Gynecology, University of Michigan, and Adjunct Professor of Epidemiology, Harvard T.H. Chan School of Public Health, and Lecturer, Harvard Medical School
ANNA CAMILLE J. MORENO, Medical Director, Midlife Women’s Health and Menopause Medicine Program, Assistant Professor, Department of Obstetrics and Gynecology, University of Utah
WALTER A. ROCCA, Professor of Epidemiology and Neurology, Ralph S. and Beverley E. Caulkins Professor of Neurodegenerative Diseases Research, Departments of Quantitative Health Science and Neurology, Mayo Clinic College of Medicine and Science
JULIA FRIDMAN SIMARD, Associate Professor, Department of Epidemiology and Population Health, Division of Immunology and Rheumatology, Department of Medicine, Department of Obstetrics and Gynecology, Stanford University School of Medicine
FARIDA SOHRABJI, Distinguished Professor and Department Head, John and Maurine Cox Endowed Chair, Department of Neuroscience and Experimental Therapeutics, and Director, Women’s Health in Neuroscience Program, Texas A&M University
SANDRA SPRINGER, Professor of Medicine, Department of Internal Medicine, Section of Infectious Diseases, Yale School of Medicine; Director of the Infectious Disease Clinic, VA Connecticut Healthcare System
Study Staff
AISHA BHIMLA, Study Director
ZARAH BATULAN, Associate Program Officer
GRACE READING, Senior Program Assistant
DONNA ALMARIO DOEBLER, Senior Program Officer
AMY B. GELLER, Senior Program Officer
MIA SALTRELLI, Senior Program Assistant
MISRAK DABI, Senior Finance Business Partner
SHARYL J. NASS, Senior Director, Board on Health Care Services
ROSE MARIE MARTINEZ, Senior Director, Board on Population Health and Public Health Practice
National Academy of Medicine Fellow in Emergency Medicine
TRACY MADSEN, Associate Professor, Emergency Medicine and Epidemiology, Brown University
Consultants
JOE ALPER, Science Writer
JILL BECKER, Patricia Y. Gurin Collegiate Professor of Psychology, Research Professor, Michigan Neuroscience Institute, University of Michigan
CAROLYN CRANDALL, Professor, Department of Medicine, General Internal Medicine and Health Services Research, Ronald Reagan UCLA Medical Center
JOHN DELANCEY, Professor, Obstetrics and Gynecology, Female Pelvic Medicine and Reconstructive Surgery, University of Michigan Medicine Von Voigtlander Women’s Clinic
JANE GAGLIARDI, Professor, Psychiatry and Behavioral Sciences, and Professor, Medicine, Duke University School of Medicine
BERNARD HARLOW, Professor of Epidemiology and Professor of Medicine, Boston University School of Public Health
JEFFREY MOGIL, Professor of Psychology, McGill University
SENIHA OZUDOGRU, Assistant Professor of Neurology; Program Director, Headache and Facial Pain Fellowship, Perelman School of Medicine, University of Pennsylvania
KAREN REUE, Professor, Human Genetics and Medicine, University of California, Los Angeles
VISHNU SUNDARESH, Associate Professor of Medicine, Director, The Osteoporosis and Metabolic Bone Health Program, University of Utah School of Medicine
MACY ZARDENETA, MD–PhD Candidate, Texas A&M University School of Medicine, Department of Neuroscience and Experimental Therapeutics
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Reviewers
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
We thank the following individuals for their review of this report:
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by SUSAN C. SCRIMSHAW, International Nutrition Foundation, and LISA I. IEZZONI, Massachusetts General Hospital. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.
Acknowledgments
The committee wishes to thank and acknowledge the many individuals and organizations that contributed to the study process and this report. To begin, we give special thanks to the National Institutes of Health, the study sponsor.
The committee and staff are grateful for the support provided by the Health and Medicine Division (HMD) and National Academies of Sciences, Engineering, and Medicine staff who contributed to producing this report. The committee thanks Lori Brenig, Samantha Chao, Monica Feit, Annalee Gonzales, Burgess Manobah, Leslie Sim, and Taryn Young (HMD Executive Office); Will Andersen, Ellen Kimmel, Christopher Lao-Scott, Rebecca Morgan, and Khiara Reed (National Academies Research Center); Benjamin Hubbert and Amber McLaughlin (Office of the Chief Communications Officer); Megan Lowry (Office of News and Public Information); Julie Eubank (Office of Congressional and Government Affairs); Patsy Powell, Dempsey Price, Ahmir Robinson, and Amechi Ukpabi (Office of Conference Management).
The committee found the perspectives of many individuals helpful in informing its deliberations through presentations and discussions at the public meetings. The following speakers provided their expertise and perspective: Drs. Janine Clayton, Holly Moore, Marjorie Jenkins, Charles Nemeroff, Nadine Burke Harris, Bess Dawson-Hughes, Arthur Mirin and Ms. Denise Hyater-Lindenmuth, Kathryn Schubert, Carolee Lee, Diana Falzone, Annika Ehrlich, Ayesha Patrick, Wendy Rodgers, The Honorable Donna F. Edwards, Ann DeVelasco, and Evelyn Kelly. Finally, the committee offers special thanks to Dr. Naoko Sasamoto for assisting in the design of a report figure.
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3 METHODOLOGICAL CONSIDERATIONS FOR STUDIES OF CHRONIC CONDITIONS IN WOMEN
Population and Non-Population Based Studies
Studies of Frequency and Distribution (Disease)
Experimental Studies of Interventions
4 IMPACT OF SELECT CHRONIC CONDITIONS IN WOMEN
Impact of Female-Specific and Gynecologic Conditions
Impact of Chronic Conditions that Predominantly Impact Women or Affect Women Differently
5 FEMALE-SPECIFIC AND GYNECOLOGIC CONDITIONS
Pregnancy and Chronic Conditions
Menopausal Symptoms and Transition
6 CHRONIC CONDITIONS THAT PREDOMINANTLY IMPACT OR AFFECT WOMEN DIFFERENTLY
7 CHRONIC CONDITIONS IN WOMEN AND THE STRUCTURAL AND SOCIAL DETERMINANTS OF HEALTH
Structural and Social Determinants of Health
Definition of Multiple Chronic Conditions
Prevalence of Multiple Chronic Conditions
Gender Differences in Multiple Chronic Conditions
Economic Effect of Multiple Chronic Conditions in the United States
Multiple Chronic Conditions Across the Life Course
Biological Mechanisms of Multiple Chronic Conditions
Examples of Multiple Chronic Conditions Clusters
Biomarkers for Multiple Chronic Conditions
Disparities and Structural/Social Contexts
Treatment and Management of Multiple Chronic Conditions
9 IMPROVING PREVENTION AND CARE FOR CHRONIC CONDITIONS IN WOMEN
Translating Research: Opportunities and Challenges
Additional Opportunities to Enhance the Translation of Research to Clinical Practice
10 AN AGENDA TO ADVANCE RESEARCH ON CHRONIC CONDITIONS IN WOMEN
Boxes, Figures, and Tables
BOXES
1-2 Translational Science Continuum
FIGURES
1-2 The committee’s conceptual framework for organizing this report
2-2 Sex and gender: modifiers of health, disease, and medicine
2-3 A bio-socio-cultural model for understanding chronic conditions and experiences in women
2-4 Impact of structural inequalities on SDOH and chronic disease disparities in Black women
5-1 Symptom heterogeneity for endometriosis
5-5 Conceptual model of infertility prevention
5-7 Risk factors for vulvodynia
5-8 The biological rationale for the effect of stressors on vulvodynia
6-1 Risk for depression across the lifespan changes based on changing levels of sex hormones
6-2 Unmet treatment needs for SUD
6-3 Trends in viral suppression by race and ethnicity, 2010–2015
6-4 Factors that cause and worsen muscle quantity and quality in sarcopenia
6-5 Factors associated with frailty in older adults
8-1 Flowchart for measuring multimorbidity indexes proposed by Stirland et al., 2019
8-2 The proportion of multimorbidity and number of chronic conditions increasing by age group
9-1 The operational phase of translational research
TABLES
S-1 Chronic Conditions Reviewed in the Report
1-1 List of Chronic Conditions in This Report
4-1 Life Course Stage of Onset of Chronic Conditions Affecting Women
Preface
WOMEN’S HEALTH DESERVES GREATER ATTENTION AND CLEARER FOCUS
Women’s health deserves greater attention from policy makers, health systems, researchers, and clinicians. While continued attention is needed to address the high rates of maternal morbidity and mortality as well as reproductive health, the chronic diseases that affect women require just as much attention. At a global level, the evidence shows that medical progress was negatively impacted by the coronavirus disease 2019 pandemic, particularly related to women’s health. Seventeen United Nations Sustainable Development Goals (SDGs) are slated to be achieved by the year 2030 and agreed upon by more than 190 countries, including the United States in 2015.
Pertinent to this National Academies of Sciences, Engineering, and Medicine (the National Academies) Consensus Study, SDG 3 centers on the health and well-being of populations, and gender equity is the focus of SDG 5. Both SDG goals may not be achieved by 2030. For example, progress toward SDG 3 has slowed, as evidenced by the minimal progress (0.04 percent) in reducing maternal morbidity in 2016–2020, significantly lower than the 2.7 percent in 2000–2015. To achieve the target for 2030, this annual rate would have to increase to 11 percent. None of the Goal 5’s 18 metrics have been achieved as of 2023, indicating many missed opportunities to make gains toward full gender equity. Thus, we not only have a sense of urgency now but also clearly recognize that the rate of progress has slowed, and significant action is needed to change that.
Human costs, of course, persist not only during pregnancy, but also across the entire life course of women across the globe driven by the costs of
caring for individuals with chronic diseases, many of which start, or at least for which they are risk factors, in childhood or early adulthood. We live in an aging society, and the cost of health care is driven by the cost of caring for individuals with chronic conditions. A recent report from the World Economic Forum (WEF) noted that enhanced investment in women’s health may result in an increase of $1 trillion annually to the global economy. Pertinent to this consensus study, the WEF report highlights four areas with opportunities for a greater focus on women’s health: (1) science, because the science on the conditions impacting women is largely based on studies that primarily involve men; (2) data shortfalls, where the estimates of the health burdens of chronic conditions for women are not fully understood; (3) care delivery, where women experience diagnostic delays in treatment and often less than optimal treatment; and (4) lower investment and fewer resources allocated toward women’s research versus the conditions that primarily impact men. The WEF report further indicates that social determinants, such as income and geography, can amplify the variations in health and care globally between women and men.
Clearly, the toll of chronic conditions on the lives of women is likely underestimated, given such factors as shortfalls in data and an underrepresentation of women in clinical research studies. Women comprise 50.4 percent of the U.S. population and are the primary caregivers of others in their families, and often significant contributors to the financial security of their loved ones. At times, their own health needs thus become secondary to those for whom they are providing care, so they minimize their symptoms and delay necessary interventions that can resolve the impacts of their medical conditions early in their life course.
Women from minoritized communities also carry the additional burden of not receiving full and required attention to their care and may also not trust the health care system to provide the necessary information to make the most informed decisions. The impact of this allostatic load, the cumulative burden of chronic stress and demands on the body, given years of discrimination, is unknown. Therefore, the intersection of the social determinants of health, behavior, provider knowledge, and health system policies and practices are critically important to clearly grasp the full impact of these and other different contributors to the health and well-being of individuals and especially women. Over the life course, such delays in diagnosis and intervention only intensify the adverse impacts on quality of life, resulting in prolonged periods of additional negative impacts from extended stretches of disability.
The consensus committee that was convened to develop a “Framework for the Consideration of Chronic Debilitating Conditions in Women” has thus crafted this report entitled, “Advancing Research on Chronic Conditions in Women.” This report offers a proactive strategic approach for better
addressing the chronic conditions that adversely impact the quality of life for women, who may be living longer but are still experiencing years of suboptimal quality of life. The committee also consciously eliminated “debilitating” to better capture the resilience exemplified by the lived experiences of individuals who shared their narratives.
The Statement of Task charges the committee to review the literature and consider what is known about the epidemiology, diagnosis, and treatment of female-specific gynecologic conditions and conditions that occur mostly in women and assess the social and economic impact of those chronic conditions on women. The committee was further requested to include separate considerations related to gender, race, ethnicity, socioeconomic status, gender minorities, and underserved rural populations. Finally, the committee was asked to propose a research agenda to advance the progress and deepen our understanding of chronic conditions in women and thereby significantly increase the pace of achieving optimal sex- and gender-based health overall.
Once the consensus committee began its work, it was clear that knowledge and research gaps persist. Imprecise diagnostic criteria, inadequate assessment of the burden of conditions impacting women, and lack of representation of female-specific conditions on national surveys were among the challenges identified in crafting a new framework. Moreover, the health impacts in the lived experiences of individuals whom we each personally knew, who shared their experiences with us on conditions such as endometriosis and multiple sclerosis, were compelling. The extensive review of the literature underscored the social and economic contributors to health and well-being of women over their life span that have not been robustly integrated into studies focused on topics such as pathophysiology, access to care, and disease management. After thoughtful deliberation, the committee reconsidered its approach assessing chronic diseases and chose a life course perspective. This model offers an opportunity to consider chronic diseases within all structural, social, and cultural contexts. The following summary of the conclusions highlight what was learned, all of which align with the findings of the WEF:
- Uncertainty related to the actual burden that specific chronic conditions have on women;
- Absence of pertinent data on female-specific conditions in national databases;
- Lack of a deep understanding of the etiology of specific chronic conditions and the impact of reproductive milestones on those chronic conditions; and
- Impact of structural and social determinants, early-life experiences, and lifestyle behaviors on the overall health of women.
Given the challenges clearly noted related to the science, data integrity, care delivery, and historical patterns of underinvestment, the committee was motivated to proceed with its process and delineate a clear research plan that would address the gaps in research outlined in the report. Sharing reflections on the lived experiences of women with chronic conditions provided an even deeper understanding of why this proposed research plan is so critical. This lived experience of one woman, as follows, clearly exemplifies the key elements that were considered in this report.
One Woman’s Lived Experience: Ms. R first became aware of a change in her health status while she was attending a program at a downtown theater in Boston. She had traveled there for the graduation of her daughter from medical school. Ms. R left her seat before intermission due to bilateral knee pain from the cramped seating. This incident was particularly notable, as it was the first time Ms. R experienced moderate pain in her knees. As she reflected on her observations of her change in functional status, she recalled the repeated periods in her life when she was always active. She considered herself a highly functional individual who walked every day to her teaching job in New Orleans. However, now, she realized that simple physical actions were becoming a challenge. She also had successfully navigated three pregnancies despite having a diagnosis of uterine fibroids. Otherwise, her adult life was largely punctuated by periodic attempts at managing weight gain following the onset of menopause.
Ms. R’s mobility declined with the gradual increase of her knee pain, so by the time she had surgery more than 15 years later, she had lost much of her mobility. Perhaps if she had decided on knee replacement before a decline in muscle strength, the outcome of her surgical intervention in her late 80s would have been different. If clinicians caring for her throughout her life course had guided her decision making more proactively, perhaps an earlier intervention would have been possible. She passed away 2 days short of her 99th birthday, having spent the last part of her life largely in a wheelchair and unable to fully function physically during her final years.
One may ask why Ms. R waited so long to undergo knee replacement surgery. As a woman of color, living in the Deep South, she faced considerable adversity throughout her entire life. She lost her mother at the age of 12, navigated childhood and adulthood through the Jim Crow era in New Orleans, and balanced a professional career with the responsibilities of raising three daughters when women were generally expected not to work outside the home. She taught at a school that was farther away from her home than the one for White students due to segregation, and sometimes she had to teach twice as many students because of segregation-induced infrastructure issues exacerbated by a construction project at another African American school, which consolidated the student bodies of two schools into one for nearly a year.
Her interactions with the health care system were not always positive. She experienced instances of disrespect when staff members addressed her
using her first name rather than more formal terms. For years, she was also assigned to segregated waiting rooms for her doctor’s appointments. Perhaps the stress and disrespect she endured because of societal attitudes compounded the health challenges in her life.
Other medical conditions also compounded the impact of the osteoarthritis: hypothyroidism, atrial fibrillation, and irritable bowel syndrome. Fortunately, her personal attentiveness to changes in her own health led to the timely detection and complete surgical removal of a modest size malignancy without any sequelae. She also developed Parkinson’s disease in her early 90s. Because discussions about mental health did not often occur in this post-Depression generation, no challenges related to mental health throughout her life course were noted. She always projected a level of confidence and well-being as she navigated her societal stresses. She and her loving husband passed that attitude on to their daughters.
This narrative is the story of my mother. She spent approximately a third of her life with less than ideal physical functioning. Thus, my incentive for advancing the work of this consensus committee is both personal and professional in its intent and strong purpose. Her narrative exemplifies a number of the topics raised in this preface and highlighted in this report. Uterine fibroids remain a major challenge for women during their reproductive stage of life, and yet only marginal progress has been made on etiology and effective management. Perimenopausal cardiometabolic syndrome and musculoskeletal challenges also impact women more than men, and both of these conditions played a significant role in my mother’s life. Atrial fibrillation is one of the conditions that impacts women differently than men. Certain lifestyle changes, which should have been recommended by her providers, might also have modified the trajectory of her mobility challenges in the later stages of life. Thus, much greater study is needed to understand the relationship between lifestyle and the chronic conditions found in women. My mother’s observance of her own bowel habits further underscores the importance of health literacy and personal agency. The nonbiological contributors to the development of Parkinson’s disease are also unknown. Last, at least a third of my mother’s life was negatively affected by delays in appropriate counseling and intervention that could have helped her better address her emerging and evolving conditions.
The WEF estimate of 9 more years of disability for women compared to men is generally shorter than what my mother experienced but nevertheless still too long to be considered acceptable for one of the wealthiest nations in the world. We are likely making some improvements. Women are undergoing knee replacement surgery earlier, at an average age of 65, whereas my mother made that choice in her 80s. Thus, the art of medicine appears to be catching up, but still not fast enough, given the burden many of these conditions still force on women.
Many readers of this report, including members of the committee, may have similar examples of these lived experiences, whether that person is a grandmother, mother, or older sister who also struggles to receive the correct diagnosis and gain effective treatment that provides meaningful, patient-centered outcomes. These observations underscore the major importance of this report.
In closing, I want to thank all of my fellow committee members for the remarkable contributions they shared in voice, mind, and script: Drs. Arthur Arnold, Cynthia Boyd, Nkechi Conteh, Kristine Deleon-Pennell, Erica Marsh, Stacey Missmer, Camille Moreno, Walter Rocca, Julia Simard, Farida Sohrabji, and Sandra Springer. We are also grateful for the hard work of the staff members of the National Academies of Sciences, Engineering, and Medicine: Drs. Aisha Bhimla, Zarah Batulan, Donna Almario Doebler, Rose Marie Martinez and Ms. Grace Reading, Ms. Crysti Park, and Ms. Mia Saltrelli. The work of this committee was carefully reviewed by both internal and external reviewers, a coordinator, and monitor, all listed in the introductory pages of this text. We appreciate their thoughtful feedback before the release of this report. We also want to thank Dr. Janine Clayton and her colleagues at the National Institutes of Health Office of Research on Women’s Health, our sponsor for this important study.
Now, the work begins for all of us. We want to create a future anchored in enhanced knowledge and strategies. Such an approach will mitigate the adverse impact of chronic conditions, improve health, and drastically reduce the number of years when women are totally dependent on others to carry out the vital functions of daily living and experience life to its fullest. The award-winning author Malcom Gladwell captures the spirit of the moment in which we find ourselves today as a research community: “People who bring transformative change have courage, know how to re-frame the problem, and have a sense of urgency.” This is not the first National Academies report on women’s health, and it will not be last. The time has come to better define our respective roles for identifying better and operationalizing more effective strategies that can address chronic conditions in women.
Eve J. Higginbotham, M.D., S.M.
Chair, Committee on Framework
for the Consideration of Chronic Debilitating Conditions in Women
Acronyms and Abbreviations
| 3D | three-dimensional |
| ACA | Affordable Care Act |
| ACE | adverse childhood experience |
| ACOG | American College of Obstetrics and Gynecology |
| ACR | American College of Rheumatology |
| AD | Alzheimer’s disease |
| AHA | American Heart Association |
| AMH | anti-Müllerian hormone |
| ANA | antinuclear antibodies |
| AIDS | acquired immunodeficiency syndrome |
| APA | American Psychology Association |
| ApoE | apolipoprotein E |
| ART | antiretroviral therapy |
| ASRM | American Society for Reproductive Medicine |
| ATCC | American Type Culture Collection |
| AUB/HMB | abnormal uterine bleeding/heavy menstrual bleeding |
| BCT | biomechanical computed tomography |
| BHOF | Bone Health and Osteoporosis Foundation |
| BMD | bone mineral density |
| BMI | body mass index |
| BRFSS | Behavioral Risk Factor Surveillance System |
| CAR | chimeric antigen receptor |
| CBPR | community-based participatory research |
| CCER | comparative clinical effectiveness research |
| CDC | Centers for Disease Control and Prevention |
| CES-D | Center for Epidemiology Studies–Depression Scale |
| CFS | chronic fatigue syndrome |
| CGRP | calcitonin gene-related peptide |
| CHD | coronary heart disease |
| CHF | congestive heart failure |
| CHI | chronic histiocytic intervillositis |
| CMS | Centers for Medicare and Medicaid Services |
| CNS | central nervous system |
| COMPARE-UF | Comparing Options for Management: Patient-Centered Results for Uterine Fibroids |
| COPD | chronic obstructive pulmonary disease |
| COVID-19 | coronavirus disease 2019 |
| CPP | chronic pelvic pain |
| CT | computed tomography |
| CVD | cardiovascular disease |
| D+Q | Dasatinib and Quercetin |
| DALY | disability-adjusted life year |
| DNA | deoxyribonucleic acid |
| DSM | Diagnostic and Statistical Manual |
| DXA | dual-energy X-ray absorptiometry |
| EAE | experimental autoimmune encephalomyelitis |
| EHR | electronic health record |
| ELP | early-life programming |
| ER | estrogen receptor |
| EWGSOP | European Working Group on Sarcopenia in Older People |
| FCG | Four Core Genotypes |
| FDA | Food and Drug Administration |
| FNIH | Foundation for the National Institutes of Health |
| FY | fiscal year |
| GABA | gamma-aminobutyric acid |
| GnRH | gonadotropin-releasing hormone |
| GWAS | genome-wide association studies |
| HCHS/SOL | Hispanic Community Health Study/Study of Latinos |
| HIV | human immunodeficiency virus |
| HIV/AIDS | human immunodeficiency virus/acquired immunodeficiency syndrome |
| HRS | Health and Retirement Study |
| IASP | International Association for the Study of Pain |
| ICHD-3 | International Classification of Headache Disorder, 3rd edition |
| IHME | Institute for Health Metrics and Evaluation |
| IL | interleukin |
| INOCA | ischemia with no obstructive coronary artery disease |
| IOM | Institute of Medicine |
| IPV | intimate partner violence |
| IRB | Institutional Review Board |
| IVF | in vitro fertilization |
| IWGS | International Working Group on Sarcopenia |
| LDL | low-density lipoprotein |
| LGBTQIA+ | lesbian, gay, bisexual, transgender, queer, intersex, asexual |
| LUTS | lower urinary track symptoms |
| MASALA | Mediators of Atherosclerosis in South Asians Living in America |
| MBSR | mindfulness-based stress reduction |
| MCC | multiple chronic conditions |
| MDD | major depressive disorder |
| MDE | major depressive episode |
| ME | myalgic encephalomyelitis |
| ME/CFS | myalgic encephalomyelitis/chronic fatigue syndrome |
| MEPS | Medical Expenditure Panel Survey |
| MINOCA | myocardial infarction with no obstructive coronary artery disease |
| miRNA | microRNA |
| MMR | maternal mortality rate |
| MRI | magnetic resonance imaging |
| mRNA | messenger RNA |
| MS | multiple sclerosis |
| NCD | noncommunicable disease |
| NCHS | National Center for Health Statistics |
| NHANES | National Health and Nutrition Examination Survey |
| NHIS | National Health Interview Survey |
| NHS | Nurses’ Health Study |
| NIA | National Institute on Aging |
| NIH | National Institutes of Health |
| NK3R | neurokinin 3 receptor |
| NSAID | nonsteroidal inflammatory drugs |
| NSDUH | National Survey on Drug Use and Health |
| OADR | Office of Autoimmune Disease Research |
| ORWH | Office of Research on Women’s Health |
| OUD | opioid use disorder |
| PCORI | Patient-Centered Outcomes Research Institute |
| PCOS | polycystic ovary syndrome |
| PDS | postpartum depressive symptom |
| PET | positron emission tomography |
| PFD | pelvic floor disorder |
| PMDD | premenstrual dysphoric disorder |
| PMS | premenstrual syndrome |
| POL | Popular Opinion Leader |
| PPD | postpartum depression |
| PrEP | pre-exposure prophylaxis |
| PRO | patient-reported outcome |
| PROM | patient-reported outcome measure |
| PTSD | posttraumatic stress disorder |
| QCT | quantitative computed tomography |
| RA | rheumatoid arthritis |
| RCDC | Research, Condition, and Disease Categorization |
| RCT | randomized controlled trial |
| RNA | ribonucleic acid |
| RRMS | relapse-remitting multiple sclerosis |
| SAMHSA | Substance Abuse and Mental Health Services Administration |
| SCAD | spontaneous coronary artery dissection |
| SDOH | social determinants of health |
| SEER | Surveillance, Epidemiology, and End Results |
| SLE | systemic lupus erythematosus |
| SNP | single nucleotide polymorphism |
| SOT | Statement of Task |
| SPAN | Stroke Pre-Clinical-Clinical Assessment Network |
| SS | symptom severity |
| SSRI | selective serotonin reuptake inhibitor |
| STAIR | Stroke Therapy Academic Industry Roundtable |
| SUD | substance use disorder |
| SWAN | Study of Women’s Health Across the Nation |
| TBS | trabecular bone score |
| TCR3 | tachykinin receptor 3 gene |
| TLR | toll-like receptor |
| tPA | tissue plasminogen activator |
| UAE | uterine artery embolization |
| USPSTF | U.S. Preventive Services Task Force |
| VFA | vertebral fracture assessment |
| VMS | vasomotor symptoms |
| WHI | Women’s Health Initiative |
| WHO | World Health Organization |
| WISE | Women’s Ischemia Syndrome Evaluation |
| WPI | widespread pain index |
| YLD | years lived with disability |
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Key Terms Related to Sex, Gender, Race, and Ethnicity
Several terms are used in the report to denote sex, gender, race, and ethnicity. The committee used inclusive terms where possible; however, when discussing results of cited literature, the committee was considerate of the terms used by researchers. The various terms in the report are below:
Sex and Gender: throughout the report, when citing research findings and study results, the committee used “female” to refer to biological factors related to animal research and “women” in human research when describing sex and gender differences. If the researchers misclassified or incorrectly used sex when referring to gender or vice versa, the term “woman” was used. In specific cases where a researcher referred to sex as “assigned female at birth,” that terminology was used in those instances.
Gender Identity and Sexual Orientation: the committee referred to various groups based on what was cited in the literature. These included:
‘‘LGBTQIA+,’’ ‘‘transgender,’’ ‘‘cisgender,’’ ‘‘bisexual’’
Race and Ethnicity: the committee referred to various racial and ethnic groups based on what was cited in the literature wherever possible. These included:
“American Indian,” “Alaska Native,” “American Indian and Alaska Native”
“Asian,” “Asian American”
“Black,” “African American,” “Non-Hispanic Black,” “Black and African American”
“Hispanic,” “Latina,” “Latina/o,” “Hispanic/Latino,” “Hispanic/Latina”
“Native Hawaiian and Pacific Islander”
“White,” “Non-Hispanic White”
Sexism and Racism: these are described as structural determinants of health, such as institutional discrimination, evident in laws, policies, or rules and occurring at the interpersonal, societal, and structural levels.
