Towards a fistula free generation: lessons learned from long-term follow-up of women after obstetric fistula repair in Guinea

Obstetric fistula (OF) is described as a health and human rights tragedy due to its devastating consequences and debilitating sequelae. In sub-Saharan Africa, the lifetime prevalence of OF symptoms is estimated at 3.0 cases (95% CI 1.3-5.5) per 1000 women of reproductive age. In Guinea, this prevalence is 6·0 (95% CI 3·9–7·4) per 1000 women of reproductive age, a double that of sub-Saharan Africa. As maternal mortality reduction is accelerating in many countries due to better access to cesarean section and more women are benefiting treatment for OF worldwide, women who have a successful fistula repair need more attention to prevent fistula recurrence and adverse maternal and neonatal outcomes.
The general objective of this thesis was to analyze the long-term reproductive health outcomes in women who undergo fistula surgery in Guinea and contribute to closing the knowledge gap on the reproductive health of women after fistula surgery.

The thesis includes fives studies using quantitative methods. First, three retrospective cohort studies were conducted as part of the situational analysis of fistula care program in Guinea. Then a systematic review synthesized the existing literature on pregnancy and childbirth post repair of obstetric fistula in sub-Saharan Africa. Finally, a cohort study was conducted to analyze the incidence of fistula recurrence and pregnancy post repair along with the associated maternal and neonatal outcomes.

We found that routine programmatic repair of OF achieved satisfactory short-term clinical outcomes with 85% of women having their fistula closed and 79% becoming continent after surgery (Study I). However, additional 18% recurrence and 10% residual urinary incontinence were recorded within 28 months median follow-up post-surgery (Study V). Reimbursement of transportation costs and the reduction of geographical barriers to care for women with OF were highly related to reduced loss to follow-up after hospital discharge (Study II). Women who present for surgery with a damaged urethra and those who delivered vaginally during the delivery leading to the fistula were more likely to experience surgical repair failure and residual urinary incontinence (Study III). Women who become pregnant and deliver after fistula repair in sub-Saharan Africa were identified as carrying high risk of adverse maternal and neonatal health outcomes (Study IV). In Guinea, only few women achieved pregnancy (28%) after surgery. Stillbirths (24%) and recurrence of fistula after delivery (14%) were common among women who delivered after fistula repair (Study V).

In Guinea, improving the performance of fistula management programs in the context of decentralization of services in Guinea needs therefore to integrate long-term perspectives. This should include establishing a “level of care framework” into fistula surgery along with training for health providers, tracing of women after repair, and increased community awareness-raising that include men and target gender inequalities. Increasing funding and support for fistula care from both local governments and international donors is needed in the current context of decentralization of fistula care to address service gaps for women suffering from fistula. Achieving a fistula free generation should include interventions to address women’s vulnerability before fistula formation and after fistula repair.