BACKGROUND: Obstetric fistula is a devastating childbirth injury. Despite successful closure of the fistula, 16% to 55% of women suffer from persistent urinary incontinence after surgery. OBJECTIVE: This study assessed the type and severity of persistent incontinence after successful fistula closure and its impact on the quality of life of Ugandan women post-fistula treatment. STUDY DESIGN: This cross-sectional study enrolled women with a history of obstetric fistula repair who continued to have persistent urinary incontinence (cases, N= 36) and women without incontinence (controls, N= 52) after successful fistula closure. Data were collected in central and eastern Uganda between 2017 and 2019. All the participants completed a semistructured questionnaire. Cases underwent a clinical evaluation and a 2-hour pad test and completed a series of incontinence questionnaires, including two novel tools designed to assess the severity of incontinence in lowliteracy populations. RESULTS: Cases were more likely to have acquired a fistula during their first delivery (63% vs 37%, P=.02), were younger when they developed a fistula (20.3 +/- 5.8 vs 24.8 +/- 7.5 years old, P=.003), and were more likely to have had >2 fistula surgeries (67% vs 2%, P <=.001). Cases reported a much higher rate of planned home birth for their index pregnancy compared to controls (44% vs 11%), though only 14% of cases and 12% of controls actually delivered at home. Cases reported higher rates of pain with intercourse (36% vs 18%, P=.05), but recent sexual activity status (intercourse within the previous six months) was not significantly different between the groups (47% vs 62%, P=.18). Among cases, 67% reported stress incontinence, 47% reported urgency incontinence, and 47% reported mixed incontinence. The cough stress test was successfully done with 92% of the cases, and of these, almost all (97%) had a positive cough stress test. More than half (53%) rated their incontinence as "very severe," which was consistent with objective findings. The 24-hour voiding diary indicated both high urinary frequency (average 14) and very frequent leakage episodes (average 20). Two-hour pad-tests indicated that 86% of cases had >4 g change in pad weight within 2 hours. Women with more severe incontinence reported a more negative impact on their quality of life. The mean score of the International Consultation on Incontinence Questionnaire-Quality of Life was 62.77 +/- 12.76 (range, 28-76, median=67), with a higher score indicating a greater impact on the quality of life. There was also a high mental health burden, with both cases and controls reporting high rates of suicidal ideation at any point since developing fistula (36% vs 31%, P=.67). CONCLUSION: Women with obstetric fistulas continue to suffer from severe persistent urinary incontinence even after successful fistula closure. Both stress and urgency incontinence are highly prevalent in this population. Worsening severity of incontinence is associated with a greater negative impact on the quality of life.

AbstractConsidered the most severe of maternal morbidities, obstetric fistula is a debilitating childbirth injury that results in complete incontinence with severe physical and psychosocial consequences.The primary intervention for women with obstetric fistula is surgical repair, and success rates for repair are reported between 80% and 97%. However, successful treatment is commonly defined solely by the closure of the fistula defect and often fails to capture women who continue to experience urinary incontinence after repair. Residual incontinence post-fistula repair is both underreported and under-examined in the literature. Through a novel mixed-method study that examined clinical, quantitative, and qualitative aspects of residual incontinence post-repair, this chapter draws on in-depth interviews with women suffering with residual incontinence and fistula surgeons, participant observation, and a desk review of fistula policies and guidelines to argue that an inadequate model of fistula treatment that neglects follow-up care exists. We found that obstetric fistula policy has been determined in large part over the years by international development agencies and funding organizations, such as international nongovernmental organizations (INGOs). We argue that the neglect in follow-up care is evident in fistula policy and can be traced to a donor-funded treatment model that fails to prioritize and fund follow-up care as an essential component of fistula treatment, instead focusing on a “narrative of success” in fistula treatment. As a result, poor outcomes are underreported and women who experience poor outcomes are largely erased from the fistula narrative. This erasure has limited the attention, resources, research, and dedicated to residual incontinence, leaving out women suffering from residual incontinence largely without alternative treatment options.

Genitourinary fistulas (usually arising following prolonged obstructed labor) are particularly devastating for women in low-income counties. Surgical repair is often difficult and delayed. While much attention has been devoted to technical surgical issues, the challenges of returning to normal personal, family, and community life after surgical treatment have received less scrutiny from researchers. We surveyed young Ugandan women recovering from genitourinary fistula surgery to assess their social reintegration needs following surgery. A cross-sectional survey of 61 young women aged 14–24 years was carried out 6 months postoperatively. Interviews were carried out in local languages using a standardized, interviewer-administered, semistructured questionnaire. Data were entered using EpiData and analyzed using SPSS. Ongoing reintegration needs fell into interrelated medical, economic, and psychosocial domains. Although >90% of fistulas were closed successfully, more than half of women had medical comorbidities requiring ongoing treatment. Physical limitations, such as foot drop and pelvic muscle dysfunction impacted their ability to work and resume their marital relationships. Anxieties about living arrangements, income, physical strength, future fertility, spouse/partner fidelity and support, and possible economic exploitation were common. Sexual dysfunction after surgery—including dyspareunia, loss of libido, fear of intercourse, and anxieties about the outcome of future pregnancies—negatively impacted women’s relationships and self-esteem. Young women recovering from genitourinary fistula surgery require individualized assessment of their social reintegration needs. Postoperative social reintegration services must be strengthened to do this effectively.

Aims: To understand whether reintegration services can improve quality of life (QoL) for women with incurable fistula (WIF) in Uganda. Methods: Standardized tools measuring health/psychosocial status and QoL were administered before and after intervention to assess impacts: Self-Reporting Questionnaire (SRQ-20), WHO QoL-BREF, and modified King’s Health Questionnaire (KHQ). Results: Before intervention, all participants had SRQ-20 scores >8, indicating psychological distress. After intervention, there was significant reduction (to 37%) in the proportion of participants with scores indicating distress (p=0.0003). As measured by WHO QoL-BREF, self-reported QoL and health satisfaction improved significantly after intervention (p=0.0003 and p<0.0001, respectively). Mean scores on specific domains (physical health, psychological, social relationships, and environment) also significantly increased (p<0.001). Physical health showed the largest increase and psychological the smallest. As measured by modified KHQ, participants’ perception of their health improved significantly after intervention (p<0.0001) as did their perception of how much fistula affects their life (p<0.0001). The KHQ also assesses seven functional domains. Mean scores significantly increased in each after intervention (p<0.01). Conclusions: TERREWODE’s intervention was associated with significant positive changes in participants’ perception of and satisfaction with health and wellbeing. While many effects of incurable fistula cannot be eliminated, individualized support may mitigate QoL impacts. Such interventions may be adapted in other settings; standardized measures enable comparison of approaches.

Aims: To document experiences of establishing state of the art women’s hospital offering holistic care to women with obstetric fistula and other child birth injuries. The care includes comprehensive treatment and management of the affected women, reintegration services that support the restoration of women’s dignity and clinical for prevention Methods: TERREWODE Women’s Community Hospital (TWCH) founded in 2016 is a subsidiary of The Association for Rehabilitation and Re-Orientation of Women for Development (TERREWODE), a Ugandan Non-Government Organization. We received, funding and support from International Fistula Alliance ,Ugandan Fistula Fund for TERREWODE, Catherine Hamlin Fistula Foundation, Hamlin Fistula USA and Hamlin Fistula Ethiopia. Results: The first phase has a 30-bed fistula surgical block and 30-bed rehabilitation and reintegration center, in addition to administration, catering and support facilities. This community-focused hospital will provide holistic routine care to patients with obstetric fistula and other childbirth injuries. It will also conduct: health education, research, Continuous Professional Development, patient rehabilitation and reintegration. On completion other services will include: conducting deliveries, neonatal care, and Antenatal care and family planning services. Up to 600 surgeries annually will be conducted in the unit. This will decongest public health facilities and reduce current backlog. Our critical success factors include: ability to attract and retain highly qualified and self-motivated personnel; our relationship with key stakeholders including Ministry of Health, suppliers, development partners and our target beneficiaries. Conclusions: It is possible with collaboration to establish specialized units offering quality care to women with birth trauma. Our experience can be replicated in other settings.