On April 10, 2017, Fistula Care Plus (FC+) held the webinar, “After Fistula Repair: Understanding Women’s Needs in Uganda,” the third in its Fistula Community of Practice (FCoP) webinar series. The webinar, moderated by FC+ Global Projects Manager Bethany Cole, featured Dr. Alison El Ayadi of UCSF’s Bixby Center for Global Reproductive Health, as well as commentary from the FC+ Program Managers Dr. Rose Mukisa of EngenderHealth Uganda and Dr. Moustapha Diallo of EngenderHealth Guinea.
Many global fistula programs, including FC+, focus on identifying women living with fistula and linking them with much-needed treatment services. However, most fistula programs are unable to follow women after they are discharged from care. Consequently, clients’ success in reintegration and their mental and physical health trajectories are not well understood. Given that genital fistula is a condition with profound physical and psychosocial impacts, this is a gap that the fistula community must address.
In order to better understand the long-term outcomes of fistula repair, Makerere University in Uganda and the University of California, San Francisco recently conducted a longitudinal study to develop a measure of post-surgical reintegration success and document physical and mental health changes among repaired clients. Using an exploratory sequential mixed-methods design, the study team followed 60 women receiving fistula surgery at Mulago Hospital from the date of their fistula repair up to one year. Additionally, qualitative research was conducted with 33 participants to better understand women’s experiences through their own words. Findings showed significant improvements in women’s post-repair physical and mental health, but documented challenges to recovery. These include:[i]
- While indicators of physical and mental health showed overall improvements during the post-surgical follow-up period, certain mental and physical sequelae (pain, pain with urination, weakness, perceived stigma) were not completely resolved by 12-months post-surgery;
- High unmet need for family planning was identified;
- Of the 7 pregnancies reported during the follow-up period, four resulted in spontaneous abortion or stillbirth;
- Resumption of sexual activity gradually increased throughout the follow up period, yet over half of women reported some level of dissatisfaction at 12 months post repair.
The study findings identify priority areas for programs to consider to enable a truly holistic approach to fistula treatment and reintegration. Findings also suggest that provision of targeted interventions including mental health counseling, health education, physical and occupational therapy, and economic assistance for women and their families might enhance women’s post-repair recovery and facilitate community reintegration.[ii] To address the high risk of adverse outcomes in subsequent pregnancies, fistula programs and/or clinicians should consider implementing continued follow-up of women post-surgery to minimize risk during subsequent pregnancies. Additionally, programs can aim to strengthen the integration of family planning into fistula services in order to address the high unmet need of women post-repair.
During the webinar, Dr. El Ayadi reviewed these study results, while commentators Dr. Diallo and Dr. Mukisa discussed the implications of these findings for the FC+ project. The webinar sparked a lively discussion during the question and answer period, including many participant questions that could not be answered during the hour-long webinar itself. Below, Dr. El Ayadi answers a selection of questions not addressed during the webinar.
Question 1: Any correlation between post-operative sexual life (especially timing) and poor health and wellbeing outcomes in the study population?
Dr. El Ayadi: This is an area of interest; however, we haven’t yet completed data analysis to assess such a relationship.
Question 2: Is psychological improvement observed following intervention? (in other words, is there a correlation between intervention services and psychosocial wellbeing?)
Dr. El Ayadi: Our study was observational and thus is not able to respond to that question directly; however, we are planning to conduct and evaluate the effectiveness of post-surgical reintegration interventions. There is some support in the literature that post-surgical reintegration services such as counseling significantly improves psychological status among women and girls affected by fistula.
I also would like to encourage organizations currently offering reintegration programming to evaluate and make the details of the interventions and evaluations available to the larger community of fistula care providers so that we can all learn from their efforts.
Question 3: Is there an intention in the study to continue follow-up after 12 months? If not, do you recommend this for programs?
Dr. El Ayadi: We do not intend to follow-up after 12 months; however, the nascent evidence on increased risk of adverse perinatal outcomes among this population is a strong argument for increasing follow-up time after fistula surgery in order to capture subsequent reproductive experiences.
Question 4: How is sexual activity measured at different time points?
Dr. El Ayadi: Our study measured sexual activity very simply, asking study participants whether they had resumed sexual intercourse at each data collection point. This was adequate for the purposes of our study, but different construction of sexual activity measures may be necessary for understanding certain questions such as impacts on fertility, etc.
Q5: How is the question about satisfaction or dissatisfaction with sexual life asked/phrased?
Dr. El Ayadi: The question on satisfaction with sexual life was taken directly from the World Health Organization’s Quality of Life BREF measure which reads “How satisfied are you with your sex life?” and includes a 5-option likert-type scale for response: very dissatisfied, dissatisfied, neither satisfied nor dissatisfied, satisfied, very satisfied. Further exploration of the topic of sexual satisfaction among this population would benefit from more nuanced questions and qualitative methodologies.
Q6: Our colleague Alex Delamou points out that we have also seen adverse outcomes (both fistula recurrence and reproductive health outcomes) in our longitudinal study in Guinea. Given the similar experience in Uganda, what is needed to improve women’s health and prevent these adverse outcomes post-repair?
Dr. El Ayadi: Post-repair follow-up and referral is necessary to ensure that women receive high quality care and delivering via elective cesarean section for all post-surgical pregnancies. Further research is needed to understand the mechanisms resulting in these subsequent adverse outcomes and how to prevent them.
Q7: Did the study findings provide any information or guidance regarding male involvement in the 12 month period after repair? They may be supportive in the healing process.
Dr. El Ayadi: Social support, including by partners, has been shown to be an important factor in assisting women affected by fistula. This is something we will be investigating in our data but do not have results on at the current time.
Q8: Were any reasons given by women who delivered vaginally rather than C-section after fistula repair?
Dr. El Ayadi: We did not systematically capture this data but based on the information given to our research interviewer at data collection, two of the women had intended to undergo cesarean section whereas one expressed that she did not want a cesarean. Of the two that had intended to deliver via cesarean, one had a very fast labor and gave birth immediately upon reaching the hospital for delivery despite a timely departure. The other was delayed in reaching the hospital due to lack of transport, arriving too late for cesarean.
Q9: Could you clarify what is meant by the mean integration score?
Dr. El Ayadi: This refers to the reintegration success measure that we developed as one of the aims of the study in order to improve measurement of the post-surgical recovery process among women repaired for fistula. Our publication on the development and validation of this measure is currently under review and we hope to be able to share it with the fistula community soon.
Q10: In considering psychosocial outcomes at follow-up, did you stratify data to consider whether surgical success (including residual incontinence) was a moderator of psychosocial improvement?
Dr. El Ayadi: We are still in the midst of our data analysis; however, this is a question of interest and we should be able to report on this soon.
Q11: Is the sample large enough for the findings to be generalizeable to the Ugandan community as a whole? Do you consider this a pilot study, and do you recommend that a further larger study be launched, perhaps with an intervention component?
Dr. El Ayadi: The study that we presented on is observational. Our sample can largely be considered representative of women seeking treatment for obstetric fistula surgery at Mulago Hospital over the recruitment period, given the very few refusals to participate. Based on our findings, I do recommend that systematic follow-up be conducted following obstetric fistula surgery and that a pilot intervention study be launched.
The participant also expresses concern about vaginal delivery post-repair, given possibility of fistula recurrence.
Dr. El Ayadi: Indeed, the literature supports the need for cesarean delivery for any post-repair pregnancies to reduce the risk of fistula recurrence.
Dr. Alison El Ayadi, ScD, MPH, is an Assistant Research Scientist at the Bixby Center for Global Reproductive Health at the University of California, San Francisco. Her research program focuses on reducing maternal health disparities in the developing world through interventions targeting structural, social, and interpersonal factors. She holds a career development award from the National Institute of Child Health and Human Development to develop and pilot test a comprehensive intervention to improve women’s recovery from obstetric fistula. She received her ScD from Harvard University, her MPH in reproductive health from Tulane University, and her BA from Colby College.
The Fistula Care Plus project, in coordination with the U.S. Agency for International Development, manages the FCoP. The purpose of the FCoP is to facilitate collective learning, knowledge sharing, coordination, and technical resource development related to preventive care, detection, treatment, and reintegration support for women, their families, and their communities, as well as to leverage that within the global conversation and activity around fistula.