Until recently, the problem of gynecological fistula has been a low-priority issue on international agendas, in part because its prevalence is perceived to be low. In fact, however, the true prevalence of fistula is not known. This report represents an effort to begin to fill the gaps in knowledge about the prevalence and covariates of fistula, a condition that causes immense suffering and yet is completely preventable. Increasing knowledge about the condition, its prevalence, and its risk factors improves the chances that maternal health in general, and the issue of fistula specifically, will receive appropriate political, financial, and programmatic attention. Establishing a baseline for prevalence will allow for the possibility of an assessment of programmatic and policy interventions. The Demographic and Health Surveys (DHS) program has therefore initiated the collection of data on the problem of fistula. This document reports on that effort, including a critique of data collection methods and an analysis of the collected data on fistula symptoms and their covariates.
This report demonstrates the effects that methodological approaches to survey implementation have on self-reported prevalence of severe incontinence and its covariates, and it underscores the need for careful consideration in sample selection and questionnaire construction. As a remedy for the suboptimal approaches to data collection that have been used in the past in the DHS program, this report presents a newly developed fistula survey module. Above all, it must be understood that all women are at risk for developing fistula, and, therefore, in the collection of prevalence data on symptoms of fistula, all women must have the opportunity to respond to a carefully considered set of questions, such as the module presented here (Figure 1.3).
While the findings highlight the difficulties of data collection on fistula specifically and on maternal morbidity in general, they also indicate that, where data were correctly collected, the majority of the reported risk factors found in the literature on fistula in the developing world were indeed correlated with women’s reported symptoms. Further, the fact that the prevalence of any incontinence in an unselected population of women can be quite high, when compared with the lower prevalence of fistula symptoms reported here, suggests that over-reporting of these symptoms in DHS surveys may not be egregious.
This report also serves to establish baseline levels of symptoms of fistula in several countries. Only through establishing the prevalence of fistula can contributing factors be identified, appropriate and sufficient resources be allocated, and interventions be evaluated at the national level. As the effort to collect data on fistula evolves, more standardized and appropriate data for analysis will become available, which will further assist the development of programmatic interventions (focused both on prevention and on repair and rehabilitation) and will better guide policymaking.
Findings from these analyses include both the expected and the unexpected. It was expected that, when women have limited access to health care, they will be at higher risk for experiencing symptoms of fistula. An association between stillbirth and reporting of fistula symptoms also was expected. In contrast, the fairly consistent association between sexual violence and fistula symptoms underscores the unexpected: resources to eradicate the suffering caused by fistula must be directed not only to improving maternal health care services, and access thereto, but also to supporting survivors of sexual violence and ultimately eradicating sexual violence against women.
Preventing pregnancy, specifically unwanted pregnancy, is a key primary prevention approach to maternal morbidity and mortality. The findings of this report indicate that, to the degree that fistulae develop through obstetric causes, there is a critical need to re-emphasize the role of family planning in ensuring maternal health and survival.
Finally, our results suggest that women who struggle with their labors do indeed seek medical care but too late to preclude severe morbidity. Women and families must be supported at the community, district, and national levels to recognize the signs of prolonged labor, to make appropriate and timely decisions about care during labor and delivery, and to have quick access to effective emergency care.
While the implementation of policy and programmatic strategies to eliminate fistula—whether of violent, obstetric, or iatrogenic derivation—will differ depending on national and subnational contexts, the driving element behind such efforts will be rooted in the same place: a sense of value and respect for the lives of women.