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1 British Columbia Centre of Excellence for Women's Health, and 2 University of British Columbia, Vancouver, British Columbia, Canada
Correspondence and requests for reprints should be addressed to Ann Pederson, M.Sc., Manager, Policy and Research, British Columbia Centre of Excellence for Women's Health, E311–4500 Oak Street, Box 48 Vancouver, BC, V6H 3N1 Canada. E-mail: apederson{at}cw.bc.ca
ABSTRACT
Emerging evidence suggests that sex and gender differences exist in the prevalence, susceptibility to, severity of, and response to treatment and management of, chronic obstructive pulmonary disease (COPD). However, the identification of knowledge gaps regarding sex, gender, and COPD involves not only pinpointing what areas of etiology, epidemiology, and management need to be examined from a sex and gender perspective (as discussed in other articles of this issue), but also must include discussion of how such new and emerging findings are translated to health care professionals, policy makers, and the general population. How emerging knowledge is reflected in educational, awareness-raising, and policy materials made available to the public through community-based organizations, lung health advocacy organizations, the government, and clinicians is not known. A preliminary examination of such documents from around the world suggests that many materials continue to present COPD as a disease that primarily afflicts men. This gap in the translation of research knowledge may be specifically problematic for women—for example, because they may not be adequately informed of the symptoms of COPD, be appropriately screened for the disease, or receive appropriate interventions and treatment.
This article reviews some of the existing public education materials that are widely available through print or electronic sources on chronic obstructive pulmonary disease (COPD). We illustrate how these materials currently describe COPD in gender-neutral terms and then offer suggestions for how these might be modified to reflect the emerging understanding that COPD is a disease that increasingly has a woman's face. While this work is only in its preliminary stages, it is nevertheless clear that the message that COPD is a disease that may be different for women and men is not yet widely acknowledged.
EMERGING FINDINGS REGARDING WOMEN AND COPD
Researchers are increasingly identifying sex and gender differences in COPD prevalence, symptoms, diagnosis, self-care, coping strategies, and determinants of quality of life for individuals and populations (1–4). For purposes of this project, sex is defined as biological differences between men and women, and gender is defined as a sociocultural understanding of personality traits, attitudes, values, behavior, and power and influence that are differentially ascribed to the two sexes (5, 6). Recent epidemiologic findings in Canada indicate that the prevalence of COPD has increased in both men and women, and in 1998/99 prevalence became higher among women (7). A search for an explanation of the difference in prevalence rates suggests that women may be more susceptible to certain risk factors for COPD than men (8). Air pollution, as well as environmental and occupational exposure, may be linked to increased prevalence of COPD in women-dominated industries such as textiles and handcrafts, and due to exposure to cooking fuels. Genetic factors have also been suggested as increasing the risk for women in developing COPD, and women are more susceptible to the COPD risk factor of malnutrition (8). Despite the increasing prevalence of COPD among women, research suggests that primary care physicians in North America may be under-diagnosing COPD in women (1). Furthermore, men and women interpret symptoms associated with COPD acute exacerbations differently, as women generally self-medicate less and wait longer before visiting the emergency room (1), and women are twice as likely as men to be admitted for exacerbation (9).
Studies are also suggesting differences between women and men in coping and self-management behaviors. For example, women with COPD use different coping strategies than men, but research on the gender differences in the benefits of pulmonary rehabilitation is inconclusive and warrants further investigation (4, 10).
Women with COPD report significantly lower psychosocial health-related quality of life (11). Women's quality of life is affected earlier than men's during the course of COPD, and women's quality of life is determined by factors other than traditional prognostic values such as exercise capacity and dyspnea (3). Collectively, these studies illuminate important differences between women and men in relation to living with COPD. The question is: are these differences reflected in the information and awareness-raising materials directed at informing the public and educating policy makers about COPD?
HOW ARE SEX AND GENDER DEPICTED IN CURRENT COPD EDUCATION, AWARENESS-RAISING, AND POLICY MATERIALS?
To provide a review of how sex and gender is depicted in publicly available information, a content exploration of international, English language education, awareness, and policy-related documents produced by nonprofit, government, and professional organizations was conducted to identify some clear gaps in gender messaging. These organizations are important because they represent groups that are both potential users of research-based information on COPD and important providers of COPD information to the general public and policy makers. For purposes of the content exploration, education materials are those that described activities or programs that aim to impart knowledge on COPD through instruction or teaching; awareness-raising materials as those that provide information or try to share knowledge of COPD and its risk factors; and policy as a statement of action intended to guide, influence, or determine present and future decisions.
Nearly 200 documents (n = 192) are publicly available from the Internet, including: epidemiologic surveillance and evaluation reports; resource materials; press releases; public education documents; policy statements; and clinical guidelines.1 The materials are produced by organizations ranging from international organizations such as the World Health Organization to national and local lung health advocacy and information groups. The majority of documents originate in Canada, Australia, the United States, and the European Union; they typically target a general audience, although some specifically direct their message to policymakers or healthcare providers. A small number of documents are tailored for people living with COPD, health advocates, or the media and most of the materials are available to the general public at no cost on the Internet.
The vast majority of the materials are sex- and gender-neutral; that is, COPD is presented as a disease that affects "people" rather than "women and men." In general, the information is presented assuming that biological or sociological factors of COPD were the same for men and women. This is true regardless of the source of the information and was true across all types of information. International, national, provincial, and local organizations, as well as for-profit and nonprofit organizations or groups (including women's health organizations) did not present information about COPD that reflects the growing prevalence of COPD among women and the concomitant changes that this means for diagnosis, treatment, management, and care. The documents that provided female-related or women-specific content were largely national and international public health, surveillance, and advocacy organizations (e.g., World Health Organization), various lung associations (e.g., Canadian Lung Association, Australian Lung Association), and the Centers for Disease Control and Prevention in the United States.
Of the materials that explicitly introduced considerations of sex and gender with respect to the current and/or future state of COPD, the majority provided sex-disaggregated surveillance data (e.g., sex-based statistics) such as epidemiologic data on prevalence, incidence, mortality, and hospitalization rates. For example, the Canadian Lung Association's Women and COPD reports the prevalence, mortality, and hospitalization rates of COPD in women, biological burden of symptoms for women, and screening issues (1, 12). Some (13) only report the statistics on men's prevalence and ignore the statistics indicating women's diagnoses are increasing in prevalence. For example, the GOLD document dropped reporting gendered information between annual revisions (e.g., the gendered impact of resource utilization in COPD outcomes, although previously addressed in older GOLD documents (2005), is not mentioned in the current document).
Surveillance reports were more likely than other materials to report sex and gender differences and to call for action to ameliorate the trends in COPD. Such materials are a tool to signal health care researchers, providers, and policy makers of emerging trends in morbidity and mortality and, as such, are an obvious site for the early appearance of information on the potential increase in COPD among women. For example, the European Commission's Indicators for Monitoring COPD and Asthma in the EU (14), and the Lung Association's Towards a National Framework for Respiratory Disease in Canada: Environmental Scan Report (15) and Women and COPD (12), emphasize that there is a need for gendered surveillance data to accurately portray the impact of COPD. A few of these went further and discussed not only the evidence that COPD was increasing among women but the implications for other areas of activity, including diagnosis, morbidity and mortality, and implications for quality of life. For example, The Australian Lung Foundation's Economic Case Statement (16), states that "with the increasing prevalence of COPD in females and the fact that many of these women are widowed, the burden of care is falling increasingly on the extended family or community services" (p. 15). Similarly, PHAC's Respiratory Disease in Canada (7) consistently addresses the social implications of women's increasing COPD rates, and provides projections for future concerns based on current epidemiologic data. The Canadian Lung Foundation's Women and COPD (12) and the European Lung Foundation's COPD (17) also address diagnosis and the sex differences of burden of the disease.
In many of these documents, the concepts of sex and gender are not applied clearly and appropriately, that is, they do not reflect currently accepted usages. For example, the term "gender" is used to label figures or tables when in fact the table is only a breakdown of information by "sex," or by female and male; this is the case for example in the Fort Air Partnership report (18) and the What is COPD? brochure (13). Gender, understood here as the socially constructed roles and responsibilities and attributes assigned to women and men on a differential basis, is seldom discussed in any depth. For example, with the exception of the Australian Lung Foundation, there is little discussion of how sex-segregation in the labor force exposes women and men to different levels of risk for developing COPD or how the gendered nature of paid and unpaid work (women provide the majority of care in our society) shapes risks for COPD, living with COPD, or caring for someone living with COPD.
KNOWLEDGE GAPS AND FUTURE RESEARCH
The content exploration of publicly available material clearly demonstrates that the majority of these materials on COPD do not systematically present information about the disease etiology, risk factors, severity, and response to management with respect to sex and gender. Thus the materials that are being produced to educate the public, clinicians, and policy makers about COPD are not reflecting current research findings that suggest women and men have different risks of developing COPD, have different likelihoods of being tested for and/or diagnosed with COPD, and have different experiences with living with and managing the disease. As a minimum, these materials should reflect the rapidly changing epidemiology of COPD as women continue to see dramatic changes in prevalence, hospitalizations, and mortality.
This observation raises questions about the links between research findings and its use by knowledge organizations such as public awareness groups, advocacy organizations, and even policy makers. How linked are these organizations to researchers? What is their capacity for assimilating and reflecting research findings? What mechanisms are available to ensure that emerging research findings are picked up and incorporated into educational and advocacy materials? Who is responsible for such efforts and what are the respective roles of researchers, educators, advocates, and policy makers? How can researchers relate to organizations at an international level using emerging evidence of the global female tobacco epidemic (19)—a major driver of the changing incidence and prevalence patterns of COPD in women and men—to help draw attention to the changing shape of the COPD epidemic to come?
In Canada, discussions of knowledge translation are increasingly prominent in health research circles; it is now commonplace to be required to outline a knowledge translation plan in research proposals to major health granting agencies (20). Yet knowledge translation itself—what processes work with what audiences, the respective roles of knowledge producers and knowledge users, and how health information is obtained, understood, and acted upon—is still an emerging area of knowledge and practice among health researchers. Research has clarified, however, that knowledge translation is not an event but a process (20). Further, it is agreed that knowledge translation includes traditional forms of research dissemination, such as publication in scholarly journals and presentations at academic conferences, but extends beyond those practices to encompass communication of research in various formats as appropriate to various audiences (21). Most importantly for the purpose of the present discussion, researchers in knowledge translation are arguing that to be effective, knowledge translation means establishing relationships with the so-called end users of research findings, bearing in mind that these users cannot necessarily be determined in advance (21, 22). Effective knowledge translation is a series of feedback loops in which those engaged in research and those who are interested in the outcomes of research interact so as to exchange ideas and influence each other about research priorities, questions, the interpretation of findings, and the implications for action.
Future knowledge translation efforts in COPD will need to be more deliberate in directing the findings of research not only to the scientific literature but also to those organizations engaged in public education and advocacy regarding COPD. Participants in the workshop suggested that research groups such as ICEBERGS need to be strategic in disseminating research and to work with public education and advocacy groups that have existing relationships with the public and policy makers to share the message about the changing face of COPD. Knowledge translation about sex, gender, and COPD is further complicated by the poor public awareness of the disease itself, as COPD itself is not widely understood as a term and there is little public awareness of the condition except among patients and their families. They also raised the issue of the stigma associated with COPD, given its association with smoking, a comment corroborated by the literature.
At present, there are emerging surveillance data from leading research organizations that are reporting on findings about women's and men's different experiences of COPD. Yet the vast majority of most information remains sex- and gender-neutral or implies that COPD is a disease of men. It is clear that publicly available materials need to keep pace with scientific evidence that is increasingly showing differences between men and women in susceptibility to, severity of, and response to treatment and management of COPD. This gap in knowledge translation has important implications for the health of people living with COPD and the health care system at large. It is important that people who are responsible for translating evidence on COPD and other lung health conditions into practice, policy, and publicly available information develop materials and interventions that are based on a gender-sensitive approach, one that adequately demonstrates that the face of COPD is increasingly female.
FOOTNOTES
This article is based upon a workshop discussion at the "Toward a Research Agenda on Gender and Chronic Obstructive Pulmonary Disease" conference in Vancouver, British Columbia, as well as a literature review and review of relevant websites.
Supported by The Canadian Institutes of Health Research.
1 Although we recognized that tobacco is the best known risk factor for COPD, an examination of policy documents on the tobacco control movement was explicitly the task of another group within ICEBERGS (see the article by Greaves and Richardson in this symposium, pp. 673–677), so our analysis was limited to those organizations that produced documents that specifically addressed COPD/lung health and sex/gender rather than those which approached the issue from the perspective of tobacco. Despite this approach, the majority of documents nevertheless reflect the fact that smoking is the principal risk factor for developing COPD. 
Conflict of Interest Statement: None of the authors has a financial relationship with a commercial entity that has an interest in the subject of this manuscript.
(Received in original form July 5, 2007; accepted in final form October 4, 2007)
REFERENCES
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