Experiences of women seeking treatment for obstetric fistula: findings from Bangladesh, Guinea, Niger, Nigeria and Uganda International Obstetric Fistula Working Group, 14 November, 2012 Evelyn Landry, Vera Frajzyngier, Joseph Ruminjo, Frank Asiimwe, Thierno Hamidou Barry, Abubakar Bello, Dantani Danladi, Sanda Oumarou Ganda, Sa’ad Idris, Maman Inoussa, Maura Lynch, Felicity Mussell, Dulal Chandra Podder, Mark A. Barone
Background • Caused by prolonged obstructed labor, iatrogenic injury, and sexual violence • Most obstetric cases are preventable through a timely cesarean • Occurs predominantly in sub-Saharan Africa and south Asia • An estimated global prevalence of 2,000,000 • In most cases fistula is treatable through a surgical procedure
Study Summary Objectives:To determine factors that predict outcomes of fistula repair surgery and to examine socio-structural factors associated with fistula Design: Prospective cohort study Time frame: September 2007 – September 2010 Sites: 11 facilities supported by Fistula Care in Bangladesh, Guinea, Niger, Nigeria, and Uganda
Study Methods • Data collected on standardized report forms • Data entered into a CSPro database and analyzed using SPSS version 19.0 • Descriptive analysis was performed across countries. • For categorical data, frequencies were used to describe characteristics and experiences. • For continuous data, medians and inter quartile ranges (IQR) were used.
Results • Data are presented for 1354 women who underwent fistula repair surgery: • 140 from Bangladesh, • 251 from Guinea, • 171 from Niger, • 422 from Nigeria, • 370 from Uganda. Data from follow up interviews are presented for 1300 women (96% of the sample) who returned for the follow-up visit.
Profile of women by country, continued ^ Multiple responses allowed; * Among married women
Effects of fistula on daily activities before surgery by country (%) ^multiple responses
Effects of fistula on daily activities 3 months post surgery by country (%) ^multiple responses
Conclusions • This study is one of the largest collections of data with profiles and experiences of women with fistula • One of the few studies that includes follow-up information about the status of their lives post-surgery across multiple sites and countries. • While there are notable differences in some women’s experiences by country, overall a similar picture emerges from this study: • these women married young, • most reported to be married at the time of admission for surgery, • levels of education were low, and for many the, • fistula did not occur with a first pregnancy.
Conclusions (continued) • Major challenge for many maternal health programs is the need to address safe birth planning. • Attendance at ANC requires improvement • Women and their families need to be better prepared about importance of a birth plan and warning signs of pregnancy complications • Counseling for fistula patients about fertility potential and planning for next pregnancy needs to be strengthen in some programs • Ensure women have access to FP services once they return home
Conclusions (continued) • Social re-integration for many women improved post surgery • Most women report improvements in their daily life activities 3 months post surgery • Effective treatment and support programs is needed for women who remain incontinent following surgery • Longer term follow-up of women who have had fistula repair is need to learn about their experience of re-integration and achievement of fertility intentions.
Peer-reviewed Publications from this Study • Factors Influencing Fistula Repair Outcomes in Developing Country Settings: A Systematic Review of the Literature (American Journal of Obstetrics and Gynecology, February 2012) • Determinants of Fistula Repair Post-Operative Outcomes: A Prospective Cohort Study (Obstetrics & Gynecology, September 2012) • Factors Influencing Choice of Surgical Route of Repair of Urinary Fistula, and the Influence of Route of Repair on Surgical Outcomes: Findings from a Prospective Cohort Study (British Journal of Obstetrics and Gynecology, October 2012) • An additional three articles are in progress on the following topics: • Development and comparison of prognostic scoring systems for fistula repair • Procedures and practices for fistula surgery • Cross-country comparisons of socio-structural factors associated with fistula
Acknowledgements Local study site teams & administration of study sites • USAID: • Mary Ellen Stanton • Erin Mielke • Patricia MacDonald • Neal Brandes • John Yeh • Chelsea Smart • CDC: • Florina Serbanescu • Paul Stupp The women who participated in the study. • EngenderHealth NY: • Karen Beattie • Julianne Deitch • Altine Diop • Sarah Burgess • EngenderHealth staff from: • Bangladesh • Guinea • Nigeria • Uganda • Niger (Fistula Care’s local partner REF) • www.fistulacare.org The Geneva Foundation for Medical Education and Research (GFMER)
Data, Indicators and Research SWG – Dec 2010 • Are there causes of infertility in fistula patients that can be addressed? • Optimization of surgical outcomes: Criteria for surgery ? Are the patients in best health state prior to surgery to optimize healing? • Colostomy or not? • Preventive bladder drainage? • Catheterization for at risk cases • Incidence and prevalence – how to calculate? • Reintegration at different levels & tool to identify patients who need • Reproductive functions of Fistula patients • Survival of fistula repair, through subsequent pregnancies? • Follow up of patients sent home with catheter after 5-7 days? • New technologies for surgery? • Causes & management of post-surgery incontinence? • Systematic review of published literature
Data, Indicators and Research – Dec 2010 cont’d • In addition to the above, partners committed to: • In the knowledge that there is no registration/documentation of research that is underway need to create a platform to promote interaction between partners (website with access to publication on Fistula? To promote further dialogue and identify research gaps) • The FIGO Competency based Manual should incorporate the list of core indicators • Harmonization of terms