Fistula Foundation

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Published: August 2019; Last updated: December 2021 (2011 review, 2014 update)

Summary

What do they do? Fistula Foundation supports the treatment of obstetric fistula by providing funding to hospitals that perform surgeries, providing funding to train new surgeons, conducting community outreach, reintegrating patients into their communities after surgery, constructing new hospitals, and providing surgical equipment. (More)

Does it work? Fistula Foundation may be increasing surgeries in the facilities it supports. However, the evidence that supports this conclusion is not straightforward to evaluate. We believe that Fistula Foundation’s qualitative arguments are reasonable but we have not yet vetted them due to our limited capacity. Fistula Foundation reports that the surgeries it supports lead to a high rate of continence immediately after surgery; we have not yet assessed the quality of this data. Fistula Foundation has told us that it collects data on physical, psychological, and social wellbeing at 3, 6, and 12 months post-surgery; we have seen a limited amount of data from 3-month follow-ups and no data yet from 6- or 12-month follow-ups. (Fistula Foundation reports that since it shared data with us in early 2018, it has collected longer-term follow-up data in some locations.) The independent evidence base on long-term outcomes following fistula surgery is also limited, though we recently learned about research that may improve the evidence base. We have not yet reviewed this new research. (More)

What do you get for your dollar? From an initial cost-effectiveness analysis, our best estimate is that Fistula Foundation may be in the range of cost-effectiveness of our current top charities. (More)

Is there room for more funding? Fistula Foundation has told us that it could use additional funding to support additional fistula surgeries, and that it would plan to spend the bulk of additional funds on its “Countrywide Treatment Networks.” We have not yet asked for details on how those funds would be spent. (More)

What are GiveWell's next steps? We hope to continue our assessment of Fistula Foundation in the future, focusing on the following questions, which are discussed in more detail below:

  • We would like to understand in more detail the exact nature of Fistula Foundation's role in supporting fistula surgeries. Who does it provide funding to? Does it directly perform any activities that lead to additional surgeries? How is the Countrywide Treatment Program distinct from Fistula Foundation's activities in other countries?
  • Does Fistula Foundation increase the number of fistula surgeries relative to the number that would have occurred in its absence?
  • What are the long-term outcomes of these surgeries?
  • What are the opportunity costs of the capacity that Fistula Foundation draws into working on fistula? For example, if it supports surgeons, what would these surgeons have done in its absence?

Table of Contents

What do they do?

Fistula Foundation (www.fistulafoundation.org/) was formed in 20001 and supports the treatment of obstetric fistula, a childbirth injury.2 An obstetric fistula is an abnormal opening between the vagina and the bladder (vesicovaginal fistula) or rectum (rectovaginal fistula), typically caused by prolonged obstructed labor.3 For more information, see our intervention report.

Fistula Foundation operates in 26 countries in Sub-Saharan Africa and Asia.4 The majority of Fistula Foundation funding goes to local hospitals to perform fistula surgeries. It also funds a range of other activities, depending on the country. These include: community outreach to raise awareness and identify prospective patients, providing surgical equipment, renovating operating theatres, training new surgeons and nurses, and providing reintegration support for patients after surgery. It has also helped fund the construction of new hospitals.5 In 2017, Fistula Foundation had revenues of $10.7 million.6

Countrywide Treatment Networks

Fistula Foundation launched its first “Countrywide Treatment Network” (formerly referred to as “Action on Fistula”) in 2014 in Kenya, and a second one in 2017 in Zambia. Countrywide Treatment Networks aim to take a more comprehensive approach to fistula treatment by providing funding for every step in the process, from identifying prospective patients to reintegrating patients into their communities after surgery. 7

We have not asked Fistula Foundation about its Countrywide Treatment Networks in Kenya and Zambia in detail and therefore have a limited understanding of what these programs do and how this work leads to fistula surgeries. Answering these questions would be a major focus of the next phase of our analysis of Fistula Foundation.

Does it work?

Does Fistula Foundation increase surgeries relative to the counterfactual?

Fistula Foundation may be increasing surgeries in the facilities it supports. However, the evidence that supports this conclusion is not straightforward to evaluate. We believe that Fistula Foundation’s qualitative arguments are reasonable but have not yet vetted them due to our limited capacity. Our remaining questions include: how did Fistula Foundation collect and verify data on the number of surgeries performed, and how many surgeries would have taken place in a counterfactual where Fistula Foundation did not intervene?

What data have we seen?

Fistula Foundation shared data on fistula surgeries performed at six Fistula Foundation-supported facilities in Kenya (covering 2012-2017) and four Fistula Foundation-supported facilities in Zambia (covering 2015-2017). Across the Kenyan facilities, total fistula surgeries increased from 337 in 2012 and 389 in 2013, before the intervention, to 1,082 in 2017. Across the Zambian facilities, total fistula surgeries increased from 123 in 2015 and 133 in 2016, before the intervention, to 216 in 2017.8

However, the summary data that Fistula Foundation has shared with us leaves us with remaining questions. We have not yet followed up with Fistula Foundation to ask for more details about:

  • Data quality: We do not have information about how this data was collected and whether its accuracy has been verified.
  • Pre-existing trends: We have seen two years of data on fistula surgeries in both countries before Fistula Foundation entered. We have not yet seen information on whether other factors aside from Fistula Foundation’s support may have contributed to increases in fistula surgeries.9
  • Comparison to other facilities: We have not yet seen data from non-Fistula Foundation-supported facilities in the regions where Fistula Foundation works. We would ideally use such data to assess factors such as a) whether similar trends in fistula surgeries occurred at other facilities, and b) whether increases in surgeries at Fistula Foundation-supported facilities may replace surgeries that would have occurred at other facilities to some extent.
  • Opportunity cost: What are the opportunity costs of the capacity that Fistula Foundation draws into working on fistula? For example, if it supports surgeons, what would these surgeons have done in its absence?

Qualitative Argument

Fistula Foundation told us that a key reason why it believes that the vast majority of surgeries it has funded would not have happened without its work is that, on average, women who receive Fistula Foundation-supported surgeries have been living with fistula for 9 years prior to surgery, suggesting that earlier treatment was unavailable.10 We have not yet vetted Fistula Foundation’s patient data on which this average is based. Further analysis of this kind of information could help us to assess the counterfactual availability of surgery to Fistula Foundation’s target population.

Key remaining questions

  • What steps were taken to verify the accuracy of the data collected at the Fistula Foundation-supported facilities? How was this data collected?
  • Over time, how many fistula surgeries have taken place at all facilities (both those supported and not supported by Fistula Foundation) in the regions in which Fistula Foundation operates?
  • Is there evidence of an upward trend in fistula surgeries before Fistula Foundation's intervention?
  • Do other actors provide funding for fistula surgeries in these regions – for example, the local government, private funders, or other donors?

Is there evidence from immediately after surgery that Fistula Foundation-supported surgeries are high quality?

Fistula surgery is complex, and its success depends on the nature of the fistula and the experience of the surgeon, both of which can vary across contexts.11 Therefore, we believe it is important to assess the success rate of surgeries in contexts supported by Fistula Foundation.

Fistula Foundation shared reports with us containing information on surgical outcomes for its patients immediately after surgery, including whether patients are continent. Of the 2,515 Kenyan patients for whom we have seen data, 90% were continent at the time of discharge.12

We tried to compare the surgical success rates reported by Fistula Foundation to those observed in other studies and contexts. Arrowsmith et al. 201313 survey 46 studies and find an average continence rate of 70%.14 However, these studies measure continence at various times ranging from catheter removal to up to 28 months after surgery. More generally, we do not know whether the methods used to measure continence in the Fistula Foundation-reported data are comparable to the methods used in these studies.15

Our remaining questions about success rates for Fistula Foundation-supported surgeries include:

  • How has data on surgical success rates been collected and verified?
  • Does Fistula Foundation collect data on all patients or a subset?
  • How does Fistula Foundation choose which patients included in its post-surgery monitoring should receive longer term follow-ups?

We have not yet followed up with Fistula Foundation to ask for more details concerning the questions above.

Is there evidence from longer-term follow-ups that Fistula Foundation-supported surgeries improve quality of life?

Fistula Foundation reports that the surgeries it supports lead to a high rate of continence immediately after surgery; we have not yet assessed the quality of this data. Fistula Foundation has told us that it collects data on physical, psychological, and social wellbeing at 3, 6, and 12 months post-surgery; we have seen a limited amount of data from 3-month follow-ups and no data yet from 6- or 12-month follow ups. (Fistula Foundation reports that since sharing data with us in early 2018, it has collected longer-term follow up data in some locations.16 ) The independent evidence base on long-term outcomes following fistula surgery is also limited, though we recently learned about research that may improve the evidence base (see this footnote. We have not yet reviewed this new research.

We have seen data from Fistula Foundation on whether fistulas remain closed and whether continence continues three months after surgery for approximately 80 women.17 Fistula Foundation told us that, since sharing this data with us, it has collected additional three-month follow-up data, as well as data for 6 and 12 months post-surgery.18

In addition to physical recovery, a goal of fistula surgery is to improve psychosocial outcomes.19 The data Fistula Foundation has sent us contains some information about psychosocial outcomes – for example, asking a subset of women about their self-esteem, interest in subsequent fertility, and several economic outcomes.20 We have only seen this data for a small sub-sample of patients and do not yet know how these questions or this sub-sample were chosen.

We discuss the independent evidence base (i.e., studies of non-Fistula Foundation programs) on long-term outcomes following fistula surgery in our intervention report and find that long-term follow-up data on physical surgical success and psychosocial life outcomes is limited. However, Fistula Foundation recently shared with us new research that may improve the evidence base.21 We have not yet reviewed this new research.

What do you get for your dollar?

We have created an initial cost-effectiveness estimate, which can be viewed in this spreadsheet. We think that Fistula Foundation may be in the range of cost-effectiveness of our current top charities. However, this estimate is highly uncertain for a number of reasons:

  • Fistula Foundation's interaction with other entities providing fistula surgeries: We are unsure what fraction of Fistula Foundation-supported surgeries would have taken place elsewhere in its absence.22
  • Long-term continence rates: We are unsure what fraction of patients are continent in the long term.23
  • Value of averting fistula: How we value averting a year of fistula relative to the outcomes of our top charities has a large impact on our estimates, and this is very difficult to assess given the limited available information on long-term psychological or social outcomes after surgery.
  • Opportunity cost of the capacity that Fistula Foundation draws into treating fistula: Additional funding for fistula surgery may cause surgeons to spend less time on other valuable programs. We have not yet discussed this with Fistula Foundation or included it in the existing cost-effectiveness analysis.

Is there room for more funding?

Fistula Foundation's revenue and surgery numbers tripled between 2012 and 2017, reaching $10.7 million and 6,685 respectively in 2017.24 Our understanding is that there is a large global unmet need for fistula surgery, but we have not yet investigated this question closely.25 Fistula Foundation therefore believes it could absorb significantly more funding than it currently expects to receive. In a conversation with Kate Grant, Fistula Foundation CEO, and Lindsey Pollaczek, Fistula Foundation Senior Program Director, we were told that Fistula Foundation would use additional funding for the following:

  • Countrywide Treatment Programs. Fistula Foundation would expand the existing Countrywide Treatment Programs in Kenya and Zambia, and/or establish similar programs in places such as Angola, Madagascar and Northern Nigeria.26 These programs require significant funding. For example, the Kenyan program costs approximately $1.2 million each year, not including the resources that Fistula Foundation invested to build the network of providers.27 Fistula Foundation would spend approximately 70% of additional funding on these programs.28
  • Partnerships with individual hospitals. The remaining 30% of additional funding would be spent on additional surgeries through partnerships with individual hospitals.29

Our process

Our investigation to date has taken the following steps:

  • We have had interactions with Fistula Foundation for several years and conducted a very preliminary review in 2011 and published an update in 2014 (both now outdated).
  • We decided to dig deeper on Fistula Foundation after some work with IDinsight to better understand the cost of fistula surgery (described in more detail in this blog post), and following conversations with a variety of fistula organizations.
  • We have since had one phone conversation with Fistula Foundation, in which we asked for documents relevant to the key questions described in this review.
  • Added December 6, 2021: In January 2020, we published a blog post describing our research related to Fistula Foundation.

Sources

Document Source
Action on Fistula Follow-up Trackers Confidential
Action on Fistula Kenya Treatment Data Confidential
Action on Fistula Total Surgeries Data Source
Adler et al. 2013 Source
Arrowsmith et al. 2013 Source
Browning and Menber 2008 Source
Delamou et al. 2017 Source (Archived)
Drew et al. 2016 Source (Archived)
El Ayadi et al. 2019 Source (Archived)
Fistula Foundation website "About Us" Source (Archived)
Fistula Foundation website "Action on Fistula" Source (Archived)
Fistula Foundation website "Countries we help" Source (Archived)
Fistula Foundation website "Ethiopia" Source (Archived)
Fistula Foundation website "Financials" Source (Archived)
Fistula Foundation website "Guinea-Bissau" Source (Archived)
Fistula Foundation website "Kenya" Source (Archived)
Fistula Foundation website "Mauritania" Source (Archived)
Fistula Foundation website "Our Approach" Source (Archived)
Fistula Foundation website "Rwanda" Source (Archived)
Fistula Foundation website "Senegal" Source (Archived)
Fistula Foundation website "Somalia" Source (Archived)
Fistula Foundation website "Zambia" Source (Archived)
GiveWell's non-verbatim summary of a conversation with Kate Grant and Lindsey Pollaczek, February 16, 2018 Source
DCP3: Essential Surgery, 2015 Source
Lombard et al. 2015 Source
Mwangi et al. 2012 Source (Archived)
  • 1

    "Fistula Foundation was founded in 2000 as an all volunteer organization to support the pioneering Addis Ababa Fistula Hospital in Ethiopia." Fistula Foundation website "About Us"

  • 2

    "Fistula Foundation does one thing and we do it well: treat obstetric fistula." Fistula Foundation website "Our Approach"

  • 3

    "A gynecologic fistula refers to an abnormal communication between the urinary tract or the gastrointestinal tract and the genital tract, produced by obstetric causes, usually prolonged and obstructed labor." DCP3: Essential Surgery, 2015, p.95.

  • 4

  • 5

  • 6

    Robyn Leslie, Fistula Foundation Director of Philanthropy, edits to this review, June 2019

  • 7
    • The below quotation refers to the “Action on Fistula” program, but Fistula Foundation told us that it expects to refer to this work differently going forward, as “Kenya Countrywide Treatment Network.”
    • "Action on Fistula's innovative model addresses every element in the battle against fistula and emphasizes partnership above all else. Now, an integrated network allows surgeons, outreach workers, and hospitals to share resources and information to treat even more women, more effectively, with the highest level of care. Action on Fistula focuses on four main areas:
      • Innovative Community Outreach
      • A collaborative Network of Fistula Hospitals
      • Certified Surgeon Training
      • Holistic post-surgery care & job skill training"

      Fistula Foundation website "Action on Fistula"

  • 8

  • 9

    The number of fistula surgeries may change over time for several reasons. For example, there may be changes in the incidence of fistula due to changes in the quality of medical care, there may be changes in surgical capacity, or there may be changes in consumer knowledge about the surgery.

  • 10

    Fistula Foundation mentioned this statistic as part of its responses to this review in a private email sent to GiveWell on July 6, 2018.

  • 11
    • "Although most fistulas are reparable, success depends on the severity and characteristics of the fistula, skills of the surgeon and surgical method used." Lombard et al. 2015, p.555.
    • "The surgical approach can be vaginal, abdominal, or combined, based on the location of the fistula and the preference and experience of the surgeon. The vaginal route seems to be associated with less blood loss and pain (Chigbu and others 2006). However, the evidence on the difference in operative complications and speed of recovery is limited." DCP3: Essential Surgery, 2015, p.102.

  • 12

    We calculated this rate using data provided to us by Fistula Foundation in the Action on Fistula Kenya Treatment Data spreadsheet.

  • 13

    We rely on Arrowsmith et al. 2013 because it was the most recent meta-analysis of fistula surgery outcomes that we had identified as of the last time we looked into the literature in June 2017. "The authors reviewed 46 published articles that addressed outcomes in fistula care. Most articles were published between 2006 and 2013", p.399.

  • 14

    "By contrast, rates of dryness (i.e., no incontinence remaining after closure) are much lower, spanning from 42 to 92%, with most between 50 and 80% and averaging 70%." Arrowsmith et al. 2013, p.400.

  • 15

    "In the reports reviewed, continence status was recorded at catheter removal, at discharge, at 14 days after surgery, at 21 days, at 4 weeks, at 3 months, and at follow-up out to 28 months." Arrowsmith et al. 2013, p.400.

  • 16

    Robyn Leslie, Fistula Foundation Director of Philanthropy, comments on this review, June 2019

  • 17

    This data is contained in the Action on Fistula Follow-up Trackers spreadsheet, sent to us by Fistula Foundation.

  • 18

    Robyn Leslie, Fistula Foundation Director of Philanthropy, comments on this review, June 2019

  • 19

    Arrowsmith et al. 2013 discuss several consequences of fistula and obstructed labor for women's reproductive health. On p.401, they ask: "If the successful treatment of these consequences of obstructed labor is so critical to women, can the fistula community ignore them as it defines successful outcomes? The same might be said of social parameters, such as successful reintegration into community, remarriage and return to work." See the section entitled 'A broad view of success' on p.401 for further discussion.

  • 20

    This data is contained in the Action on Fistula Follow-up Trackers spreadsheet, sent to us by Fistula Foundation.

  • 21

    Fistula Foundation shared the following recent studies with us:

    • El Ayadi et al. 2019, Abstract: "METHODS: We recruited a 60-woman longitudinal cohort at surgical hospitalisation from Mulago Hospital in Kampala Uganda (Dec 2014-June 2015) and followed them for 1 year. We collected survey data on physical and psychosocial health at surgery and at 3, 6, 9 and 12 months via mobile phone. Fistula characteristics were abstracted from medical records. All participants provided written informed consent. We present univariate analysis and linear regression results.

      RESULTS: Across post-surgical follow-up, most women reported improvements in physical and psychosocial health, largely within the first 6 months. By 12 months, urinary incontinence had declined from 98% to 33% and general weakness from 33% to 17%, while excellent to good general health rose from 0% to 60%. Reintegration, self-esteem and quality of life all increased through 6 months and remained stable thereafter. Reported stigma reduced, yet some negative self-perception remained at 12 months (mean 17.8). Psychosocial health was significantly impacted by the report of physical symptoms; at 12 months, physical symptoms were associated with a 21.9 lower mean reintegration score (95% CI -30.1, -12.4)."

    • Drew et al. 2016, Abstract: "Methods: In-depth interviews were conducted in Chichewa with 20 women from seven districts across Central Malawi. All women were interviewed 1 to 2 years after surgical repair for obstetric fistula at the Fistula Care Centre in Lilongwe, Malawi. Interviews were independently coded and analyzed using content analysis.

      Results: About half of women were married and nine of 20 women reported some degree of urinary incontinence. With the exception of relationship challenges, women’s concerns before and after repair were different. Additionally, repair had resolved many of the concerns women had before repair. However, challenges, both directly and indirectly related to fistula, persisted. Improvements in quality of life at the individual level included feelings of freedom, confidence and personal growth, and improved income-earning ability. Interpersonal quality of life improvements included improved relationships with family and friends, reduced stigma, and increased participation with their communities. Nearly half of women desired future pregnancies, but many were uncertain about their ability to bear children and feared additional pregnancies could cause fistula recurrence. Most women were well informed about fistula development but myths about witchcraft and fear of delivery were present. Nearly all women would recommend fistula repair to other women, and many were advocates in their communities."

    • Delamou et al. 2017, Summary: "Methods: We did a longitudinal study in women discharged with a closed fistula from three repair hospitals supported by EngenderHealth in Guinea. We recruited women retrospectively (via medical record review) and prospectively at hospital discharge. We used Kaplan-Meier methods to analyse the cumulative incidence, incidence proportion, and incidence ratio of fistula recurrence, associated outcomes, and pregnancy after successful fistula closure. The primary outcome was recurrence of fistula following discharge from repair hospital in all eligible women who consented to inclusion and could provide follow-up data.

      Findings: 481 women eligible for analysis were identified retrospectively (from Jan 1, 2012, to Dec 31, 2014; 348 women) or prospectively (Jan 1 to June 20, 2015; 133 women), and followed up until June 30, 2016. Median follow-up was 28·0 months (IQR 14·6–36·6). 73 recurrent fistulas occurred, corresponding to a cumulative incidence of 71 per 1000 person-years (95% CI 56·5–89·3) and an incidence proportion of 18·4% (14·8–22·8). In 447 women who were continent at hospital discharge, we recorded 24 cases of post-repair residual urinary incontinence, equivalent to a cumulative incidence of 23·1 per 1000 person-years (14·0–36·2), and corresponding to 10·3% (5·2–19·6). In 305 women at risk of pregnancy, the cumulative incidence of pregnancy was 106·0 per 1000 person-years, corresponding to 28·4% (22·8–35·0) of these women. Of 50 women who had delivered by the time of follow-up, only nine delivered by elective caesarean section. There were 12 stillbirths, seven delivery-related fistula recurrences, and one maternal death."

    Fistula Foundation also shared with us some older research (Mwangi et al. 2012 and Browning and Menber 2008) and we have not yet revisited whether this was included in the systematic reviews of evidence that we considered. In our intervention report we rely heavily on Arrowsmith et al. 2013 and Lombard et al. 2015.

  • 22

    Our guess is that approximately 15% of Fistula Foundation-supported surgeries would have taken place in its absence, but this is very speculative. It is based on the idea that we would expect only a small amount of crowding out, since our understanding is that fistula surgery is relatively neglected. We have not yet done additional research to inform this parameter.

  • 23

    Our current estimate is that approximately 70% of patients are continent in the long term, for which we have used the continence rate in Arrowsmith et al. 2013, p.400: "By contrast, rates of dryness (i.e., no incontinence remaining after closure) are much lower, spanning from 42 to 92%, with most between 50 and 80% and averaging 70%."

  • 24

    Robyn Leslie, Fistula Foundation Director of Philanthropy, edits to this review, June 2019

  • 25
    • "Overall we estimate that just over one million women may have a fistula in sub-Saharan Africa and South Asia", Adler et al. 2013, p.9.
    • If the cost of fistula surgery is in the ballpark of $1,000, this implies a global capacity for fistula surgery funding on the order of $1 billion. See our intervention report for more details.

  • 26

    "Fistula Foundation would spend approximately 90% of any additional funding on its countrywide treatment programs, expanding the Kenya and Zambia programs, and/or establishing similar programs in places such as Angola, Madagascar, and Northern Nigeria." GiveWell's non-verbatim summary of a conversation with Kate Grant and Lindsey Pollaczek, February 16, 2018, p.2.

  • 27

    "For example, the Foundation’s Kenya program costs around $1.2 million per year, not including the additional resources the Foundation invested to build the network of providers." GiveWell's non-verbatim summary of a conversation with Kate Grant and Lindsey Pollaczek, February 16, 2018, p.2.

  • 28

    This estimate of the percentage of marginal funds that would be spent on Countrywide Treatment Programs came from suggested revisions from Fistula Foundation staff while they were reviewing this page.

  • 29

    "The remaining... funding would fund additional surgeries through partnerships with individual hospitals." GiveWell's non-verbatim summary of a conversation with Kate Grant and Lindsey Pollaczek, February 16, 2018, p.2. This estimate of the percentage of marginal funds that would be spent on partnerships with hospitals came from suggested revisions from Fistula Foundation staff while they were reviewing this page.

Source URL: https://www.givewell.org/international/charities/Fistula-Foundation