Patient characteristics, surgery outcomes, presumed aetiology and other characteristics of fistula surgeries and related procedures supported by Fistula Foundation from 2019 to 2021: a multicentre, retrospective observational study

Abstract

Objectives

Obstetric fistula is a devastating childbirth injury primarily caused by prolonged, obstructed labour. It leaves women incontinent, severely stigmatised and isolated. Fistula repair surgery can restore a woman’s health and well-being. Fistula Foundation, a non-profit organisation, works in partnership with local hospitals and community organisations in Africa and Asia to address key barriers to treatment and to increase the number of women receiving surgical care. This paper presents data on fistula and fistula repair surgery across a large global network of hospitals supported by Fistula Foundation. The data were collected between 2019 and 2021.

Design

Multicentre, retrospective, observational, descriptive study.

Setting and participants

The study analysed deidentified data from 24 568 surgical repairs supported by Fistula Foundation to treat women with obstetric fistula at 110 hospitals in 27 countries.

Results

The data highlight patient characteristics and key trends and outcomes from obstetric fistula repair surgeries and related procedures. Of those surgeries, 87% resulted in a successful outcome (fistula dry and closed) at the time of discharge, highlighting the effectiveness of fistula repair in restoring continence and improving quality of life. Over the period studied, the number of supported surgeries increased by 14%, but there remains an urgent need to strengthen local surgical capacity and improve access to treatment. Women suffered an average of 5.7 years before they received surgery and only 4% of women sought care independently. This underscores the importance of enhancing community awareness and strengthening referral networks.

Conclusions

This research provides essential insight from a vast, global network of hospitals providing highly effective fistula repair surgery. Further investment is needed to strengthen surgical capacity, increase awareness of fistula and remove financial barriers to treatment if stakeholders are to make significant progress towards the United Nations’ ambitious vision of ending fistula by 2030.

Strengths and limitations of this study.

• The study includes all surgeries supported by Fistula Foundation over 3 years, a total of 24 568 procedures done in 27 countries—representing one of the largest datasets on fistula repair.

• Data are based on the completion of Fistula Foundation’s patient log and may be subject to inaccuracies due to data entry errors or poor recall.

• Data are based on patients who received surgery and may not represent the patient population that continues to live with untreated injuries.

• Patient outcomes are assessed at the time of discharge, which may differ from long-term outcomes.

Introduction

Obstetric fistula is a devastating childbirth injury primarily caused by prolonged, obstructed labour combined with lack of access to critical medical interventions, such as a caesarean section (C-section). During prolonged labour, which often lasts multiple days,¹ the woman’s contractions continually push the baby’s head against her pelvis. Soft tissues caught between the baby’s head and her pelvic bone become compressed, restricting normal blood flow. Without adequate blood supply, sections of tissue can die and slough away, leaving a hole—a fistula—between the woman’s vagina and bladder and/or rectum. Fistula cause incontinence of urine, faeces or both, and can result in chronic medical problems, depression, social isolation and deep, intractable poverty for women affected.¹

There is a lack of reliable data on the number of women living with fistula globally. Currently, it is estimated that 1–2 million women suffer worldwide.² Additionally, the estimated incidence of new cases per year is between 50 000 and 100 000 000.³ This dearth in data can be attributed to the low status of women and girls who are affected by this condition. Women with untreated fistula are subject to poverty, geographical barriers, stigma and shame, which make it challenging to study this marginalised population. Areas with limited access to skilled birth attendance and emergency obstetric care—like rural areas or those impacted by conflict or humanitarian crises—are likely to have a higher incidence of fistula.⁴ Conversely, obstetric fistula has practically been eliminated from the USA and Europe because of universal access to safe delivery care in high-income nations.⁵

Although obstetric fistula persists in Africa and Asia, in most cases it can be cured through reconstructive surgery. This intervention has been proven to greatly enhance the physical and psychological well-being of women who have suffered from the condition.^6–8 However, many women with fistula are unable to access timely, high-quality care due to barriers exacerbated by poverty and gender inequality. These include a lack of awareness that fistula is a treatable medical condition, a lack of knowledge about where treatment is available, the inability to afford surgery and/or transportation to a hospital, and the scarcity of well-equipped facilities with adequately trained staff.⁹

Fistula Foundation, a non-profit organisation based in San Jose, California, addresses these barriers in pursuit of its mission to end the suffering of women injured in childbirth.¹⁰ In accordance with its theory of change (figure 1), Fistula Foundation funds surgery, including preoperative and postoperative care; training for surgeons, nurses and other healthcare providers; equipment and infrastructure improvements; awareness and education to identify patients and reduce stigma within communities; and rehabilitation post-repair through counselling and vocational training for fistula survivors.

Figure 1.

Fistula Foundation theory of change.

From 2009 to 2022, Fistula Foundation worked with 126 partners across 33 countries in Africa and South Asia. This expansive network of partners includes hospitals and individual surgeons that perform repair surgery as well as community-based organisations that spread awareness, identify patients and rehabilitate women after surgery.¹¹

Fistula Foundation is the global leader in funding fistula care and has one of the largest datasets available on fistula repair. In 2021 alone, it supported 9477 repair surgeries in 25 countries. Existing literature on fistula primarily focuses on a single hospital site, one country or a limited number of countries. Unlike the narrow focus of existing literature, Fistula Foundation also tracks surgery types, the surgical outcome at the time of hospital discharge, presumed cause of fistula and patient demographics. In 2019, after Fistula Foundation recognised the role it could play in augmenting the knowledge base in this field, it adopted a standardised instrument for data collection. This instrument allowed for consistent and dependable collection of women’s health status data, which facilitated precise and comparable analysis across partner organisations.

This paper aims to fill this critical gap in fistula data by sharing a comprehensive overview of the 24 568 surgeries provided by Fistula Foundation’s treatment partners across 27 countries over a 3-year period between 2019 and 2021. This dataset offers a robust and trustworthy analysis of the surgeries performed by Fistula Foundation’s treatment partners. Due to the size and breadth of this sample, it is our belief that the results have the potential to reflect the global landscape of fistula cases. Such insights could be useful in shaping policies and practices for the treatment and recovery of fistula patients.

Methods

Study design and setting

The primary objective of this paper is to provide a comprehensive analysis of the distribution and types of fistula surgery, outcomes, methods of referral, aetiology and characteristics of women who received surgical treatment with funding support from Fistula Foundation between 2019 and 2021. This study employs a descriptive, multicentred approach to analyse data collected from Fistula Foundation partner organisations across multiple countries. We established a significance threshold of p<0.001 to evaluate the statistical significance of outcome results. Microsoft Excel, V.2308 was used for data processing and analysis.

Data management and measurements

The data analysed in this study were derived from Fistula Foundation’s Patient Log, a standardised data collection instrument (online supplemental table 1). It is mandatory for all surgeries supported by Fistula Foundation to have surgical data recorded on the Patient Log. Surgeons in partner organisations record each woman’s demographic information (including age, location, duration living with incontinence, age at fistula onset, etc), presumed cause of fistula, diagnosis, procedure type, outcome(s) at discharge, duration of hospital stay, complications, and future treatment or follow-up plans on Fistula Foundation’s template Log.

Once the Patient Log is submitted, it undergoes a thorough review by Fistula Foundation’s Grant Review Committee, comprised of programme staff and a medical advisor, who is an expert in fistula surgery and programme management. The committee conducts a comprehensive assessment of the data and contacts the partner organisation for clarifications if needed. In cases where direct communication with the on-site surgeon is required, the Foundation’s Medical Advisor initiates it to foster collaboration and improve patient care. In Kenya and Zambia, countries where Fistula Foundation Treatment Networks (FFTN) exist, an additional level of data review and validation is conducted monthly by the in-country Monitoring and Evaluation Officer prior to the report submission to the Grant Review Committee.

The data are managed in a centralised Salesforce database to ensure accuracy and consistency. This database enables Fistula Foundation to monitor trends and identify areas where programmatic improvements can be made to better serve patients.

Results

Surgery volume, type and geographical distribution

Fistula Foundation supported a total of 24 568 surgeries between 2019 and 2021. The fistula surgeries funded during this period included treatment for vesicovaginal fistula (VVF; an abnormal opening between the bladder and vagina¹²), rectovaginal fistula (RVF; an abnormal opening between the rectum or anus and vagina¹³), ureteric fistula (a hole between the ureter and vagina¹⁴) and urethral fistula (a hole between the urethra and vagina¹⁵). Additionally, Fistula Foundation supported related procedures for women with a history of fistula including sling and urethroplasty, vaginoplasty, urinary diversion, bladder stone removal, catheterisation, colostomy opening and closing, and examinations under anaesthesia (EUA). It is important to note that the total number of surgeries performed does not directly correlate to the number of women treated, as some women may undergo multiple operations for different types of fistula or related procedures, resulting in multiple counts for the same individual. In some instances, a woman will undergo a VVF surgery as a primary procedure and a RVF surgery as a secondary procedure at the same time. For the purposes of this analysis only the primary procedure is counted and not the secondary procedure. (Starting in 2021, Fistula Foundation revised its patient log to include both primary and secondary procedures for patients undergoing more than one procedure at the same time. Prior to this revision, patients undergoing both VVF and RVF repair were categorised under ‘VVF/RVF repair,’ which was a separate category.)

Fistula Foundation also funds surgery for severe third-degree and fourth-degree perineal tears. These tears usually occur during precipitous labour, which does not allow time for the perineum to stretch during the delivery of the baby’s head. As a result, the soft tissue tears from the vagina to the anus.¹⁶ The most severe of these cases may include a complete tear of the anal sphincter muscle and even rectal mucosa, leaving a woman incontinent of flatus and faeces. As the physical and psychological consequences of these injuries may resemble those of fistula, Fistula Foundation broadened its mandate to encompass severe tears.¹⁷ As shown in figure 2, these tear repairs comprise approximately 18% of procedures funded over 3 years.

Figure 2.

Types of procedure funded by Fistula Foundation from 2019 to 2021. *The category of ‘Other Procedures’ in the graphic above includes ureteric fistula repair, EUA, vaginoplasty, VVF/RVF repair, bladder stone removal, urinary diversion, colostomy opening, colostomy closing, catheterisation and bladder augmentation. ^#Starting in 2021, Fistula Foundation revised its patient log to include both primary and secondary procedures for patients undergoing more than one procedure at the same time. Prior to this revision, patients undergoing both VVF and RVF repair were categorised under ‘VVF/RVF repair,’ which was a separate category. EUA, examinations under anaesthesia; RVF, rectovaginal fistula; VVF, vesicovaginal fistula.

From 2009 to 2022, Fistula Foundation supported more than 75 000 fistula surgeries, perineal tear repairs and related procedures in 33 countries. After 11 years of steady growth, the number of surgeries Fistula Foundation supported decreased for the first time in 2020 due to the unprecedented COVID-19 pandemic.¹⁸ During that time, restrictions on travel and gatherings impeded community mobilisation, patient transportation and surgical outreach, resulting in a precipitous drop in surgery numbers from April to June. Fortunately, most Fistula Foundation partners were able to recover and resume working at their pre-pandemic levels by the end of 2020. Overall, the number of surgeries funded in 2020 represented a 17% decrease from 2019. Growth in surgery numbers is dependent on treatment capacity at individual partner sites and the addition of new partners to the Fistula Foundation’s global network. Fistula Foundation supported 55 partners in 2019, 59 in 2020 and 65 in 2021. Many partners provide fistula repair surgery at more than one hospital site location. In 2021, Fistula Foundation partners reported providing fistula repair surgery at 110 sites, indicating the broad geographical reach of services supported by Fistula Foundation. This enabled the number of surgeries to increase 39% from 2020 to 2021 and increase 14% from 2019 to 2021 when the impact of COVID is excluded.

From 2019 to 2021, Fistula Foundation worked in a total of 27 countries—23 in Africa and 4 in Asia. Of the surgeries supported during this period, 87% were performed in Africa and the remaining 13% in Asia. Fistula Foundation supported work in 22 countries in 2019, 22 countries in 2020 and 24 countries in 2021 (online supplemental table 2). The map (figure 3) shows the presence of Fistula Foundation colour-coded by the cumulative number of surgeries supported between 2019 and 2021. Over these 3 years, the countries with the highest volume of surgeries funded by the Foundation were Kenya (n=4574), Nigeria (n=2477), Madagascar (n=2420), Democratic Republic of Congo (n=2311) and Pakistan (n=2017).

Figure 3.

Geographical distribution of surgeries funded by Fistula Foundation from 2019 to 2021.

Surgery outcomes

The primary endpoint evaluated in this study is the outcome of surgery on discharge from the hospital. The outcome classifications used by Fistula Foundation are ‘Closed, continent (Dry),’ which indicates that the fistula has been closed and the patient is continent; ‘Closed, incontinent,’ which indicates that the fistula has been closed, but the patient continues to experience some degree of incontinence; and ‘Not closed,’ which indicates that the fistula remains open, and the patient has not regained continence. Since 2020, Fistula Foundation has also included the outcome ‘Other’ for special cases that do not fit into the three classifications. Protocols for outcome assessment were developed by The International Federation of Gynaecology and Obstetrics (FIGO), which advises best practices on fistula care through its Expert Advisory Group and Fistula Surgery Training Initiative.¹⁹ Fistula Foundation requests that partners follow these standardised protocols when assessing outcomes at the time of discharge.

Fistula Foundation focuses on six procedure types for which the intent of the surgery is to cure incontinence when analysing outcomes. These six procedure types are VVF repair, RVF repair, both VVF and RVF repair, third/fourth degree perineal tear repair, ureteric fistula repair and urethral fistula repair/replacement, as shown in table 1. Starting in 2021, partners were asked to select a primary procedure and a secondary procedure for surgeries done at the same time. It is to be noted that for the other procedures that the Foundation supports, the immediate intent/outcome of the surgery is not to resolve incontinence. Hence, these procedures are excluded from the outcome analysis.

Table 1.

Surgery outcomes

Surgery outcomes, cumulative (2019–2021)
Type of procedure	Closed, continent (dry)	Fistula closed, incontinent	Fistula not closed	Other	N
VVF repair	83.2%	7.3%	9.1%	0.4%	12 464
RVF repair	93.7%	2.3%	3.7%	0.3%	2068
Both VVF and RVF repair	75.0%	12.2%	12.8%	0.0%	156
Third/fourth degree perineal tears	97.9%	0.6%	1.0%	0.5%	4347
Ureteric fistula repair	92.8%	3.1%	3.6%	0.6%	704
Urethral fistula repair/replacement	76.5%	14.1%	9.0%	0.4%	852
Total	87.3%	5.5%	6.7%	0.4%	20 591
VVF and RVF outcomes, by repair history
Number of previous repair attempts	Closed, continent (dry)	Fistula closed, incontinent	Fistula not closed	Other	N
0	88%	5%	6%	0%	9781
1	79%	9%	12%	0%	2011
2	73%	10%	16%	1%	763
3	61%	17%	21%	0%	339
4+	54%	19%	26%	1%	241
Unassigned	86%	7%	6%	0%	310
Total	84%	7%	8%	0%	13 445

From 2019 to 2021, 87% of fistula and perineal tear surgeries performed at Fistula Foundation partner sites were assessed as dry at the time of discharge. Outcomes were relatively consistent across the 3 years. However, outcomes differ by procedure type—surgeries with the highest success rates were third and fourth degree perineal tear repairs (98% dry or continent) and RVF repairs (94% dry or continent). Surgeries with the lowest success rates were VVF/RVF repairs (75% dry) and urethral fistula repairs/replacements (77% dry). Previously, patients who underwent both VVF and RVF repair procedures at the same time were combined under the category of ‘VVF/RVF repair’. However, since 2021, partners have been asked to select a primary procedure and a secondary procedure for surgeries done at the same time.

The relationship between procedure type and surgical outcome is statistically significant (p<0.001), and hence, there is a significant association between the type of procedure and the outcome. Existing research has found that bladder size, fistula size, vaginal scarring, urethral involvement and previous attempts at fistula repair are predictive factors for postoperative outcomes of fistula repair surgery.^{20 21} This is consistent with the lower closure rates for urethral fistula repair and replacements in Fistula Foundation’s data. Furthermore, women who have had fewer previous attempts at VVF repair, RVF repair or both have higher probability of dry outcomes (table 1). The relationship between surgical outcome and repair history is statistically significant (p<0.001). This suggests that the number of previous repair attempts is significantly associated with the outcome of fistula surgery. Perineal tear repairs were excluded so that their high closure rate would not skew the data.

Mode of referral

Many fistula survivors live in shame and isolation,²² unaware that they are suffering from a treatable medical condition or that free care is available. Getting them to a hospital setting is an essential first step in their journey from patient to survivor. To help women access surgery, Fistula Foundation’s treatment and outreach partners sensitise communities about the causes and symptoms of fistula and advertise medical services through a variety of strategies. These include training and supporting community health workers, training staff at rural health facilities to screen for fistula and refer patients to appropriate treatment centres, empowering former patients to become fistula ambassadors and advocates, and advertising on radio and other mass media. A few organisations employ additional unique approaches. For example, WADADIA, a Fistula Foundation outreach partner in Kenya, supports a ‘Kick Fistula Out of Africa’ girls soccer team that shares messages about fistula during their matches.²³

Because patient recruitment is essential to increase the number of women able to access care, it is important to know which strategies have been most effective. Based on the 19 238 cases for which data are available between 2019 and 2021, most patients were referred to the treatment facility by community health workers (34%) or by other health facilities (25%). However, there are geographical variances, as shown in table 2. In Western Africa, for example, former patients were the most common mode of patient referral (21%). In Asia, relatives played a larger role (13%) than in Africa (6%). The findings highlight the essential role of awareness creation, as globally only 4% of women actively sought out care for fistula treatment on their own. This underscores the need to enhance strategies to strengthen referrals and increase access to treatment.

Table 2.

Mode of referral and aetiology of fistula, by subregion, 2019–2021

	2019–2021	Africa	Central Africa	Eastern Africa	Western Africa	Asia	Southern Asia	Global total
Aetiology and presumed cause of fistula, 2019–2021
Obstetric	n	18 595	3633	11 950	3012	1727	1727	20 322
	%	91%	89%	93%	87%	57%	57%	87%
Iatrogenic	n	1332	377	633	322	1196	1196	2528
	%	7%	9%	5%	9%	40%	40%	11%
Traumatic	n	325	37	238	50	71	71	396
	%	2%	1%	2%	1%	2%	2%	2%
Other	n	183	31	81	71	31	31	214
	%	1%	1%	1%	2%	1%	1%	1%
Total	n	20 435	4078	12 902	3455	3025	3025	23 460
Mode of referral by subregion, 2019–2021
Number of women reached, n	n	16 305	3986	9867	2452	2933	2933	19 238
Mode of referral
Health facility	%	20%	42%	11%	18%	52%	52%	25%
Community health worker	%	36%	10%	51%	18%	24%	24%	34%
Former patient	%	8%	9%	5%	21%	4%	4%	8%
Radio	%	12%	15%	13%	6%	0%	0%	10%
Relative	%	6%	8%	5%	9%	13%	13%	7%
Self	%	4%	2%	4%	6%	2%	2%	4%
Other	%	14%	14%	12%	22%	5%	5%	12%

The subregions in table 2 are based on the United Nations Geoscheme.³⁵ One of the most common modes of referral within the ‘other’ category were religious institutions.

Aetiology of fistula

The aetiology of fistula may be multifactorial, and Fistula Foundation categorises fistula into three types:

• An obstetric fistula is assumed to have been caused by prolonged, obstructed labour during childbirth, which can cause tissue damage and create an abnormal opening between the birth canal and bladder or rectum.²⁴

• An iatrogenic fistula is assumed to have been caused by a medical error, such as during a hysterectomy or C-section.²⁵

• A traumatic fistula is presumed to have been caused by trauma, such as sexual violence or injury.²⁶

Fistula Foundation also uses the category ‘Other’ to capture the rare cases that are not obstetric, iatrogenic or traumatic. Among these cases, cancerous origins are more predominant compared with congenital cases.

Between 2019 and 2021, 87% of the 23 460 cases for which data are available were presumed to be obstetric in origin, 11% were presumed iatrogenic, 2% were presumed traumatic and 1% were classified as other. Significant regional variations were observed, as shown in table 2. In Africa, 91% of cases were obstetric and 7% were iatrogenic, whereas in Asia 57% of cases were obstetric and 40% were iatrogenic.

Other patient characteristics

Duration living with fistula

At the time of hospital admission, data are collected on the number of years the patient has been living with fistula or a perineal tear. From 2019 to 2021, patients suffered on average 5.7 years before being treated. It is important to note that this metric relies on self-reported data provided by the patients themselves, reflecting the number of years they perceive to have lived with a fistula. However, this metric does not account for the possibility of multiple repairs the patients may have undergone. For instance, if a woman has received her first treatment after just 1 year of having the injury, but she has had subsequent repairs, the duration of living with a fistula captured in our data might represent her fifth repair, occurring several years later. At any stage of their journey, whether it is the first attempt or subsequent ones, women endure prolonged suffering. This highlights the urgent need to address the long-lasting impact of this condition on women’s lives.

A review of 1354 women from five countries reported an average duration of living with fistula of 1.0 year (IQR 0.3–3.1; data missing for 30% of the cases) calculated by subtracting the median age at fistula occurrence from the median age at repair.²⁷ Similar to this study, the duration of time that women have been living with fistula varies significantly across different countries in our dataset (online supplemental table 3). This may be due to several factors including, but not limited to, the extent of social stigma, existing treatment capacity at the country-level, geographical issues and population density.

Age at fistula occurrence

Patients treated over the 3 years had on average developed fistula at age 27.4, and this was relatively stable over the period. In this analysis, age at fistula onset is calculated by subtracting the number of years living with fistula from current age recorded at the time of fistula surgery. While it is a reasonable approximation, it may not be precise for all patients, particularly those who have had multiple procedures or who do not know their birth dates. As Fistula Foundation continues to collect data and improve its data management system, it may consider collecting age at fistula onset directly from patients to improve precision.

Discussion

Fistula is a devastating injury with severe physical, psychological, social and economic effects. Women who do not have access to treatment suffer lifelong morbidities such as faecal and urinary incontinence, kidney failure, vaginal stenosis, orthopaedic injury, neurological disorders and infertility.²⁸ In addition to these physical complications, women also experience significant emotional trauma. Ninety per cent of pregnancies in which the woman develops a fistula result in a stillbirth.²⁹ Many women affected by fistula are abandoned by their husbands and families, making it difficult for them to support themselves economically and perpetuating their poverty. The Institute for Health Metrics and Evaluation’s Global Burden of Disease Study highlights the severity of vesicovaginal fistula, rating its disability impact on par with drug-resistant tuberculosis.³⁰ Rectovaginal fistula is deemed even more disabling, with a disability weight comparable to the consequences of terminal cancer. Our study uncovers an additional distressing reality: women endure an average wait of over 5 years to access necessary fistula treatment, likely due to barriers such as cost and lack of awareness.

Fortunately, fistula is a treatable condition, and surgery provides an opportunity for complete recovery. A surgery is considered ‘successful’ when the fistula is closed and the woman’s continence is restored completely. The success rate of fistula surgeries supported by Fistula Foundation is high, with an 87% closed and continent rate. This is higher than the averages reported by the International Continence Society, which report that the average success rate of uncomplicated obstetric fistulas is 70%–80% and that of complicated obstetric fistulas as 50%–60%.³¹ Although fistula repair is usually successful, some types of fistula are difficult to repair, and some injuries are complex and will require multiple surgeries. A patient’s best chance at successful repair is usually the first attempt. In line with its commitment to enhancing surgical outcomes, Fistula Foundation recognises the importance of building surgeon capacity to perform complex procedures. Through initiatives such as surgeon webinars, on-site training and advanced surgical workshops, surgeons are equipped with the necessary skills to handle a range of surgeries while knowing when to seek expert assistance. Fistula Foundation’s Fistula Surgeons Forum hosted on WhatsApp allows surgeons to share resources, seek and receive guidance from colleagues, and celebrate milestones. Fistula Foundation also collaborates with FIGO to ensure support for highly trained surgeons and ongoing professional development. Many of our partner organisations use FIGO’s Fistula Surgery Training Manual as a comprehensive and standardised guide for their surgical procedures.

In addition to enhancing surgical capacity, improving awareness of fistula as a treatable medical condition is essential to reaching more women. The FFTN model places significant emphasis on community mobilisation as a core component of increasing access. Success stories from FFTN-Kenya and FFTN-Zambia demonstrate the value of these initiatives, as only a small percentage of women sought treatment on their own. The FFTN’s focus on community engagement has proven to be effective in reaching and helping women in need. By increasing surgical capacity and awareness of services, more women with fistula and related childbirth injuries, such as severe third-degree and fourth-degree perineal tears, can benefit from improved access to quality care. Meeting the urgent needs of all women affected by fistula and severe perineal tears remains a key focus for Fistula Foundation and its partners.

The Foundation also remains committed to its mission of reaching all women with fistula, regardless of their geographical location. The concentration of Fistula Foundation supported surgeries in certain countries (figure 3) reflects the significant burden of fistula prevalence in those regions, as well as the presence of robust partnerships, improved surgical capacity and enhanced awareness and access to fistula treatment. Notably, from 2019 to 2021, the highest number of surgeries were conducted in East and Central Africa, where the demand for treatment remains unmet, and efforts have been dedicated to strengthening partnerships and access to care over time. While the Foundation continues its work in these regions, it also strives to expand support to under-represented areas, including West Africa. However, factors like conflict and political instability pose additional challenges in reaching women living with fistula and complicate efforts to recruit, train, and retain fistula surgeons operating in high-risk regions.

Despite the advancements made in eradicating fistula, the number of women suffering with untreated fistula and other serious childbirth injuries remains unacceptably high. The Global Fistula Hub, the largest survey of fistula treatment centres worldwide, reports just over 16 000 surgeries conducted at 132 hospital locations in 2021.³² With an estimated 1–2 million women living with fistula globally, it could take decades to meet the backlog of untreated cases unless urgent action is taken. Fistula Foundation is committed to enabling more surgery each year, a trend reflected by the 14% increase in funded surgeries from 2019 to 2021. Over the next 5 years as part of the organisation’s strategic plan (2023–2027), Fistula Foundation aims to support 80 000 surgeries, expand its provider network by 40 new hospital and community partners, and launch five new country-wide FFTNs to accelerate delivery of timely and quality surgery.³³

Although important insights can be gained from this study, some limitations may persist. It is essential to recognise that the data on patient characteristics represents only those who received treatment. As such, those who continue to live with untreated injuries or never access surgery are not included. This omission may suggest that the average time women live with fistula is longer than the reported 5.7 years. Moreover, data entry errors and incomplete reporting may occur, and self-reported data from patients may be imprecise due to poor recall.

Additionally, patient outcomes are assessed at the time of discharge. While this approach enables Fistula Foundation to collect data on every case and standardise outcome assessment across its partner network, outcomes at the time of discharge may differ from long term outcomes. Currently, Fistula Foundation’s partners do not all have the capacity to collect data on long-term outcomes. Furthermore, there may be inaccuracies in the data due to variations in adherence to the outcome assessment protocols: partners may fail to assess patients properly before discharge, inaccurately record results or misclassify procedure types.

Despite these limitations, the available data from Fistula Foundation provide valuable insights into the outcomes of fistula surgeries and the large sample size suggests that the effect of the errors described may be negligible. To ensure reporting consistency, Fistula Foundation has implemented a well-structured grant review process, in which every patient log is reviewed by a medical advisor. This measure is part of the existing monitoring and evaluation strategy, and it has proved useful in mitigating the effects of limitations in our reporting.

Conclusion

In 2018, United Nations Member States adopted a General Assembly resolution, setting forth a compelling vision to eradicate fistula by 2030.³⁴ The continued prevalence of untreated fistula and perineal tears underscores the urgent need to invest resources in the prevention, treatment and rehabilitation of affected women. In pursuit of the ambitious goal to eradicate fistula by 2030, prioritising the appropriate allocation of resources becomes crucial. The data presented in this paper demonstrate the significance of this mission, emphasising the pressing need for heightened community awareness and ensuring timely access to care. As Fistula Foundation continues to operate with its singular focus on the treatment of fistula and severe tears, it is vital for nations and organisations to join forces and invest in this global effort. By strengthening health systems, providing comprehensive emergency obstetric care and addressing the socioeconomic and cultural factors that contribute to fistula, substantial progress can be made towards eliminating this devastating condition. Collective action and dedicated resource allocation are essential to achieve the United Nations’ goal of eradicating fistula by 2030.

Data availability statement

Data are available upon reasonable request. Data are available on reasonable request.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

The present study involves the analysis of data collected by Fistula Foundation for all patients who underwent fistula surgery at partner sites that received sponsorship/support. While the study uses these data, it is important to note that the research was conducted retrospectively and did not involve any direct interaction or intervention with human participants.The data used for this study were collected as part of Fistula Foundation’s grant management protocols, which mandate the collection of information for patients who receive surgical support. All patient identifiers have been meticulously removed to ensure confidentiality and privacy. The results reported in this study are based on aggregated and deidentified information, ensuring that individual patients cannot be identified or linked to the study outcomes.Since the study does not involve any prospective or additional data collection and strictly adheres to the principles of data anonymisation and protection, it was deemed unnecessary to seek approval from an Ethics Committee or Institutional Board. Nevertheless, the study maintains the utmost respect for ethical considerations and safeguards the privacy and confidentiality of the patients whose data were used.We acknowledge the importance of obtaining ethical approvals for research involving human participants and commit to ensuring adherence to ethical guidelines in any future studies that involve direct interaction with participants or additional data collection. The purpose of this study is to provide valuable insights into the treatment landscape of fistula cases, contributing to the knowledge base and informing policies and practices for the benefit of fistula patients worldwide. As stated above, it is important to note that the research was conducted retrospectively and did not involve any direct interaction or intervention with human participants. Since the study does not involve any prospective or additional data collection and strictly adheres to the principles of data anonymisation and protection, it was deemed unnecessary to receive informed consent to participate in the study.