Fistula Care Plus and the MHTF convene meetings on obstetric fistula

by Vandana Tripathi, Deputy Director, Fistula Care Plus Project at EngenderHealth

The USAID-supported Fistula Care Plus (FC+) project at EngenderHealth and the Maternal Health Task Force recently co-convened two meetings on obstetric fistula in Boston, from July 8-11. The first meeting examined recent research and emerging research priorities in fistula prevention and treatment. The second meeting dug deeper into the issue of how we measure the burden of fistula globally, and was attended by epidemiologists, demographers, fistula surgeons, midwives, and other researchers.

Mary Nell Wegner of the Maternal Health Task Force has described how the rarity and stigma of obstetric fistula contribute to difficulties in understanding how many cases there are. Additionally, the very women most likely to be living with obstetric fistula are also the most likely to be in hard to reach places with limited access to health services and, possibly, less access to media and other messages about fistula services. Without good numbers on how many women are affected by fistula, it is very difficult for health systems and policymakers to plan and organize fistula services. For example, where should fistula treatment centers be located and how can referral systems to these sites be improved? How many surgeons need to be trained in fistula repair? Where should emergency obstetric care transport services be strengthened to prevent fistula through timely C-section?

At the Boston meeting, experts from around the world talked about different approaches to understanding how many women are living with fistula and how many new fistula cases occur each year.

Kimberly Peven from the DHS Program reported that more than 25 countries have used the obstetric fistula module of questions in their national DHS Surveys, documenting the proportion of women of reproductive age living in households who have heard about obstetric fistula or who have fistula symptoms, specifically continuous incontinence. Ozge Tuncalp of the World Health Organization and Alma Alder, formerly of the London School of Hygiene and Tropical Medicine (LSHTM), described innovative ways of using community outreach and key informants to identify women with fistula in need of treatment, in Nigeria and South Sudan. Saifuddin Ahmed from the Johns Hopkins Bloomberg School of Public Health discussed statistical models that use information about related topics, such as the general fertility rate and percent of deliveries that occur in health facilities, to estimate the number of fistula cases in a particular country. Caitlin Shannon of EngenderHealth described a LSHTM study of self-reported morbidities among pregnant and recently-delivered women in Ghana, providing insights into measurement of fistula incidence. I reported on the increasing number of countries including fistula indicators into national Health Management Information Systems or piloting surveillance systems to report cases of fistula as they occur.

Meeting participants generally agreed that population-based household surveys focusing specifically on fistula are not the best or most-cost effective way to measure the prevalence of fistula, given the rarity of this condition, the rural locations in which it often occurs, and the fact that women with fistula may not be living in family homes. The high cost of such surveys may also pose an ethical issue in terms of the allocation of scarce resources that may otherwise support prevention or treatment. Through a fruitful and lively discussion, the participants identified research studies that might help strengthen other ways to measure or estimate the burden of obstetric fistula. For example, a strong interest emerged in validating interview-based diagnostic tools so there could be more confidence that self-reports and survey responses are actually measuring the prevalence of fistula, rather than other types of incontinence or even other uro-gynecological conditions.

The results of the prior Fistula Care project were achieved in large part due to strong collaborations with partners at the global and country levels. We are pleased to count the Maternal Health Task Force among our partners in FC+ and grateful for the enthusiastic participation of experts from so many global and country institutions at these two meetings. We look forward to continuing to work with partners to identify the best ways to tackle the problem of fistula measurement and estimation and address the other pressing research concerns identified during the Boston meetings. Reports from both meetings will be coming soon, and we will share them with interested colleagues.