Deciding whether to recommend fistula management charities

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We’ve long been interested in fistula surgery as a potential GiveWell priority program. However, as with other surgery charities, we have struggled to identify an organization that meets GiveWell’s criteria. Now, we’re working with a group called IDinsight and are excited that we may be able to consider a fistula surgery organization as a potential GiveWell top charity.

Our longstanding interest in interventions to treat fistula can be attributed in part to the popular narrative presented about fistula. The condition, which is often associated with social ostracization, appears to cause a significant amount of suffering, and seems to be treatable. We’re not sure how representative the popular narrative is, but as donors, it has contributed to our continued interest in better understanding this intervention, along with the feeling that surgery charities in general may offer low-cost, life-changing impacts.

Summary

This post will discuss:

  • Fistula management, including surgery, as an intervention.
  • Our open questions and uncertainty around fistula management programs, particularly their costs.
  • Our plans to partner with IDinsight to help answer some of our questions about fistula management.

Surgery charities and GiveWell

We recently published a blog post describing our work to better understand charities that implement cataract surgery programs and to assess whether they might be a fit for a GiveWell top-charity recommendation. As we discussed in that post, surgical interventions in general seem to intuitively appeal to donors due to their potential to offer inexpensive, large impacts on quality of life. However, our uncertainty about surgery charities’ room for more funding and monitoring information has generally led GiveWell to deprioritize research on charities implementing these programs in the past.

Now, as part of GiveWell’s Incubation Grants program to grow the pipeline of potential future top charities and improve our understanding of our current top charities, we’re researching organizations that work on cataract surgery and fistula surgery as potential future top charities.

This post focuses on the latter. Although both interventions are surgical, fistula surgery is distinct in a number of ways from cataract surgery and other interventions GiveWell recommends. Fistula surgery may be a major, invasive procedure. In addition, the largest negative effects of fistula may be psychological, economic, and social, rather than physical.

Fistula management as an intervention

An obstetric fistula, or gynecologic fistula, is an abnormal opening between the vagina and the bladder or rectum. Obstetric fistula is often caused by prolonged obstructed labor, where pressure from the fetus on the mother’s pelvic bone cuts off blood flow to soft tissues, which then die, leading to a hole through which urine or feces may leak through the vagina. Fistula can have physical, economic, and psychological consequences, including social isolation.

Fistula may be treated with surgery to close or partially close the opening. (In some cases, small fistulas may not require surgical treatment; in other cases, the damage may be too extensive for surgical repair.) Job counseling and life skills training aimed at social reintegration may also be part of fistula treatment. “Fistula management” describes all of these interventions, including surgery.

Our very rough cost-effectiveness estimate for fistula surgery is $1,400 per successful surgery performed. The severity of suffering, combined with the cost per surgery, may mean that fistula surgery is in the same range of cost-effectiveness as GiveWell’s current priority programs.

Our open questions

We recently published an intervention report on the evidence for surgery to repair obstetric fistula. We have a number of remaining questions that we’d like to answer before making a recommendation of an organization implementing a fistula management program. Key aspects of this intervention that we’d like to better understand include:

Outreach and cost-effectiveness

It may be challenging to identify and diagnose potential fistula cases. Fistula most often occurs in women who are located in very geographically remote areas or who are too poor to access health systems for delivery care in the event of prolonged obstructed labor. Women located in very remote areas may be hard to reach in general; women with obstetric fistula may be very hard to reach in particular, because they may be more likely to be socially disconnected or unreachable through regular community health systems.

In addition, fistula may not be well known, post-birth complications may be stigmatized, or the symptoms may not be recognized. It may be shameful for women to discuss fistula symptoms; for that reason, we’re unsure whether information about incontinence would be provided to a researcher or surveyor. Even in cases where symptoms are shared, they can be caused by other urological issues, complicating diagnosis of fistula.

We’d like to better understand what the most cost-effective methods of outreach to women with fistula are. We understand that outreach activities have included media outreach; training health workers, nurses, midwives, and doctors in fistula identification to strengthen referrals to treatment; and having women who have had treatment for fistula help identify and encourage women with fistula in their communities to seek medical care. We’re not sure what approach to outreach is most cost-effective.

How cost-effective are fistula management programs?

We’re unsure how the above outreach contributes to the overall cost per patient of fistula treatment. In addition to outreach activities, our impression is that fistula surgery programs often involve training surgeons and the purchase of equipment. We remain very unsure about the costs and benefits of these activities.

Fistula management programs may also involve a number of non-surgical interventions for patients. Some fistula centers offer rehabilitation activities for patients, such as counseling or job training. We’re not sure how common these types of rehabilitation are or what other types of support might entail, or how effective they are at improving social or economic outcomes; this could have a large impact on our overall estimate of fistula management charities’ cost-effectiveness.

What is a ‘successful’ surgery, and what proportion of surgeries are successful?

Obstetric fistulas vary in their size and suitability for surgical repair. For women who do receive surgical treatment, a “successful surgery” may not lead to continence. We’re unsure what proportion of operations successfully close fistulas due to a lack of available data in this space.

Among women whose surgeries do result in continence, we’re unsure of the extent to which that leads to positive social, economic, and psychological outcomes in turn. A major open question is whether operations that succeed in closing a fistula will address any possible social impacts of fistula.

In addition, the prolonged obstructed labor that caused the fistula could also lead to other health complications, such as infertility, scarring, and neurological damage. Repair of the fistula would generally not address these other issues, which could also have social and economic as well as physical consequences.

We are thus very interested in monitoring a) the success of surgery in repairing fistulas and b) the social and economic outcomes for women who receive fistula surgery with or without non-surgical interventions such as counseling. We have not looked closely at the studies that have been done on post-surgical outcomes, although our impression is that most studies in this space have been small. As the economic and social consequences of fistula may be among the greatest burdens of those who have fistula, we are particularly interested in understanding the impact surgery has on those outcomes.

Our plans with IDinsight

GiveWell partnered with IDinsight, an international NGO that focuses on providing clients with information to increase their social impact, as part of our work on GiveWell Incubation Grants. The “GiveWell embedded team” at IDinsight is working with us on a project to better understand the potential of fistula management organizations to become GiveWell top charities.

IDinsight plans to begin this work by focusing on the cost-effectiveness of fistula management, including surgery, as an intervention. It plans to work closely with Fistula Foundation, an organization that funds fistula treatment in Asia and Africa, to understand its costs per surgery for one country to help inform GiveWell’s assessment of the cost-effectiveness of fistula management programs in general. (Even though information from a single country will have limitations in its applicability elsewhere, we think starting at this scale is the right first step.)

If this intervention appears cost-effective—competitive with our current priority programs—following this initial phase of work, then IDinsight will likely work with GiveWell to identify one or more fistula management charities with which to develop and implement a high-quality monitoring system. With additional, high-quality monitoring information, we may better be able to understand whether a fistula management charity should be included in GiveWell’s list of top charities.

We expect this work to take several years, due to the amount of time required to set up and gather data from a new monitoring system, and do not expect this to impact GiveWell’s charity recommendations in 2017.

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