A Public Health Focus on Infertility Prevention, Detection, and Management
Several federal agencies carry out programs to address infertility, and state and local health departments play an important role. The CDC is fully engaged in infertility prevention and control (also see the Appendix): it conducts the National Survey of Family Growth; maintains the NASS, publishes the Annual ART Success Rates Report, and conducts research on ART; and studies the links between infertility treatment and birth defects, neurodevelopmental outcomes, and autism. It also maintains the National Biomonitoring Program, publishes The National Report on Human Exposure to Environmental Chemicals, carries out research on workplace hazards that may have effects on reproduction; studies the link between infertility and chronic disease; and supports the National Infertility Prevention Program, which funds chlamydia and gonorrhea screening and treatment services for low-income, sexually active young women throughout the United States. Despite the range and depth of these activities, a survey of the key areas of surveillance and epidemiologic research, prevention research, program development and evaluation, and public education reveals considerable gaps and opportunities that public health agencies could address with appropriate resources. The CDC has the necessary range of expertise and established relationships with a number of government agencies, professional organizations, and advocacy groups that are potential stakeholders to develop a comprehensive plan for infertility prevention, detection, and management. The following, not necessarily in order of importance, are key areas where we recognize unmet needs or significant gaps, and represent opportunities for strengthening infertility prevention and management.
Current surveys and surveillance systems address important aspects of infertility but are deficient in multiple areas. Whereas current systems provide general population-based estimates of the prevalence of infertility, they do not provide estimates of the prevalence of particular types of infertility (e.g., tubal-factor infertility caused by infections). Racial, ethnic, and economic disparities in access to diagnosis and treatment are difficult to address and may lead to underestimating the burden of infertility in minorities, especially given the huge disparities in underlying factors such as gonorrhea and chlamydia infection. Because disparities in access to treatment may lead to additional disparities in health and quality of life, current systems may lead to a biased assessment of the overall impact of infertility in less-privileged groups. In addition, the emphasis of current systems on infertility in women limits our ability to assess the burden of infertility in men. There is even less adequate information on the role of common environmental, nutritional, behavioral, and lifestyle risk factors in infertility that can be obtained from population-based surveys or surveillance data. With respect to treatment and treatment outcomes, whereas current systems provide adequate estimates of the success rates of ART, there are no surveillance systems to measure the success rates of non-ART infertility treatments and no systems for measuring the adverse impact of any type of infertility treatment on maternal and child health outcomes.
Ongoing data collection systems need to be developed, maintained, and expanded to obtain valid population-based measures of the burden of infertility in women and men and to better understand sociodemographic, environmental, and behavioral correlates of infertility. This can be accomplished at least in part by strengthening and expanding existing data collection systems like the NSFG and the NASS. Infertility may also be a new focus of ongoing epidemiologic data collection systems, such as the Behavioral Risk Factors Surveillance System and the Pregnancy Risk Assessment and Monitoring System, which may provide more information on behavior and health outcomes. Information available through the 2003 revision of the birth certificate, which includes information on types of infertility treatment, needs to be evaluated and may become an important source of information on maternal and child health correlates of infertility treatment. New data collection systems may be needed to achieve better coverage of specific population groups and issues. Ad hoc surveys may be needed to obtain qualitative and quantitative data relating to morbidity, treatment, outcomes, psychosocial impact, practice patterns, knowledge, behaviors, and attitudes. Data from these surveys need to be analyzed to understand whether combining the information gathered in these surveys can provide a more complete picture of infertility in the United States. Finally, appropriate mechanisms need to be put in place to maximize dissemination and utilization of surveillance data.
In-depth research studies are necessary to address some of the same issues that would be desirable to evaluate at the population level using surveillance systems. In the area of primary prevention, research into modifiable causes of infertility should be given high priority. Research is needed to elucidate the mechanisms through which specific medical conditions lead to infertility, given that detection and early treatment of these conditions may prevent infertility. Although the causal role of sexually transmitted diseases (STDs) on tubal infertility is well established, and randomized trials document that chlamydia screening prevents PID, how much the chlamydia screening program has impacted infertility is unclear. There is no information on whether interventions and programs aimed at reducing the prevalence of tobacco smoking and improving nutrition and physical activity have an impact on the prevalence of infertility. Finally, the link between infertility and chronic diseases and their treatment needs to be fully elucidated.
In the area of secondary prevention, there is inadequate information on the potential risks and benefits of early detection of fertility impairment (i.e., detection of conditions leading to infertility among individuals who are not trying to conceive or for individuals who are contemplating conception). Whereas the benefits of early detection may arise, for example, from increasing the probability of treatment success by detecting infertility at a younger age, an individual who does not intend to have a child may experience negative psychological effects of the awareness of a diagnosis that does not immediately represent a limitation and may not necessarily predict infertility in the future. Research is needed to evaluate the potential benefit of early detection and treatment of conditions leading to infertility, both among couples who are actively seeking a pregnancy and among individuals who may want a child in the future.
In the area of clinical outcomes research and tertiary prevention, there are few and limited economic studies assessing the cost-effectiveness of infertility treatment, the financial impact of treatment options, and the effect of insurance coverage on access to treatment and treatment outcomes. Because the promotion of elective SET may lead to a substantial reduction in the adverse effects and health care costs of ART-related multiple gestation, it is important to clarify the extent to which this practice can be proposed to patients with a variety of prognostic profiles and to identify biochemical and morphologic characteristics of oocytes and embryos that predict successful implantation and ultimately the birth of a healthy child. This research is critically needed to provide evidence in support of recommendations for the practice of infertility treatment and minimize the frequency and severity of adverse outcomes.
In the area of communication, there is very limited information on the needs and options for special populations who may seek infertility treatment or ART, such as cancer survivors, HIV-positive persons, and persons with known genetic conditions. There is essentially no information on the effect that disseminating information about fertility preservation and treatment options would have on attitudes, knowledge, and behavior among special populations.
These research themes need to be incorporated in the strategic research plans of governmental agencies and nongovernmental organizations and require a blend of basic science, clinical, and epidemiologic investigations and behavioral and social science research.
A preliminary survey of current programs and policies at the national and state level reveals that there is no coordination of national and state-based surveillance efforts, that there is no national strategy for integrating infertility diagnosis and treatment in reproductive health services, including preconception care, and that insurance coverage varies greatly across states. In addition, there are no comprehensive guidelines on what information and counseling should be provided to infertile couples on issues ranging from prevention to the risks and benefits of treatment, adoption, and child-free living. Finally, there is only limited discussion of the impact that ethical and legal issues surrounding infertility treatment may have on public health policies and programs.
There is increasing awareness by the public, media, and policy makers that infertility and its management are important problems that Americans face today; but there is no comprehensive national plan to address the problem of infertility. A national plan would offer the opportunity to strengthen existing prevention programs and propose new strategies based on an understanding of preventable risk factors, as well as the opportunity to systematically review definitions and to identify gaps in diagnosis and treatment guidelines. For a national plan to be truly comprehensive and effective, it would have to be evidence based, consensus driven, and developed and promoted by a coalition of stakeholders.
Decision makers at all levels of government need to be informed and advised about needs and priorities in the areas of surveillance, research, and health care and about evidence-based strategies for addressing infertility. Policy to guide surveillance and research should pave the way for the development of prevention and management strategies. Systems and policies to facilitate the translation of research results into prevention programs need to be developed. Programmatic and policy implications of surveillance and research results need to be considered and acted on as appropriate.
Professional organizations need to take the lead in the development of evidence-based practice guidelines, and the health care insurance system needs to be engaged in addressing specific forms of infertility or underlying conditions that require appropriate preventive care, diagnosis, and treatment.
Once comprehensive infertility prevention and management programs are developed, efforts need to be coordinated to ensure that they reach the people who most need them. Adherence to current recommendations to prevent infertility (e.g., screening and treatment of sexually transmitted infections that result in infertility, treatment of sexual partners, and promotion of primary prevention methods such as condom use) needs to be promoted by all stakeholders, including community organizations. Enhancement of scientific and programmatic capacity by states, territories, and tribal governments may be needed to enable health agencies to build the necessary coalitions and partnerships for translating research into public health programs, practices, and services for those who are at risk of, or suffering from, infertility.
The implementation of a national plan needs to include a strong communication and public education program, targeting policy makers, providers, and the public. Evidence-based practice guidelines on the prevention, diagnosis, and treatment of infertility and on patient counseling need to be promoted to all health care providers. Appropriate training opportunities and aid materials should be developed and marketed. Adherence to current recommendations that help prevent infertility (e.g., screening and treatment of sexually transmitted infections that result in infertility) needs to be promoted and monitored. Evidence-based messages to inform the general public about the frequency, causes, signs, and consequences of infertility need to be disseminated. The general public needs to be educated on strategies that minimize the risk of infertility. Populations at risk for infertility and poor pregnancy outcomes need to be educated on their reproductive risks and options. Discussions about infertility need to be encouraged to reduce stigma, and appropriate messages should promote attitudes and behavior that facilitate early access to infertility diagnosis and treatment. Evidence-based recommendations on diagnostic and treatment options for couples and individuals need to be appropriately worded, made accessible, and disseminated. The dissemination of public information on the options for infertility management, including adoption and child-free living, needs to be explored. The communication program should expedite the dissemination of new research findings to the general public. The feasibility of integrating infertility education into existing national reproductive health education programs needs to be explored.
Developing a National Comprehensive Public Health Plan for Infertility Prevention, Detection, and Management
The following is a list of possible aims that a broad coalition of stakeholders should consider in developing a national plan:
- To reduce the burden of infertility and reduced fecundity in the United States
- By promoting behaviors that maintain fertility
- By promoting prevention, early detection, and treatment of infections (such as chlamydia) and other medical conditions that lead to infertility
- By removing or reducing environmental threats to fertility
- To improve access to the diagnosis and treatment of infertility and eliminate disparities in infertility care
- To improve the efficacy and safety of infertility treatment
- To improve the quality of life of Americans who live with infertility
Whereas public health agencies like the CDC and state and local health departments may respond to the challenges outlined above, developing a coherent national plan requires a broader range of stakeholders to set priorities and identify the resources necessary to make the plan effective. The CDC may play a role in facilitating the development of a national action plan, but ultimately it will be a broad coalition of interests that will own and implement the plan. Collaborative partnerships enable the CDC to tap into outside knowledge and expertise, address challenging public policy issues, and reach new populations. In the area of infertility, the potential partners of the CDC include other federal agencies, the scientific community, the health care community, insurance providers, employers, industry, advocacy groups, the general public, and of course, people who are coping with infertility. Ensuring that all of these partners’ voices are heard can be difficult but is necessary to achieve success.
A coalition of public and private sector organizations working together needs to identify opportunities and set priorities for reducing the burden of infertility in the United States. The development of a comprehensive plan requires a coordinated, multidisciplinary approach to address infertility, from primary prevention to treatment and support.
Successful strategies to define and reach target groups (such as individuals at risk of developing infertility, or infertile patients) require the development and promotion of improved protocols, guidelines, and evidence-based practices, as well as rigorous evaluation of demonstration projects. It is incumbent upon policy makers, program planners, and consumers facing infertility to ensure the translation and application of research findings and population-based implementation of best practices nationwide.
Further development of public health and clinical interventions demands a partnership between public and private entities. Such system changes may be accomplished through formal and informal means—through laws, regulations, and community “standards of practice,” as well as by altering the economic, social, and physical environment.