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Prognosis and Quality of life of Obstetric Fistula Patients in Bangladesh

Prognosis and Quality of life of Obstetric Fistula Patients in Bangladesh. Saifuddin Ahmed Rene Genadry Bloomberg School of Public Health Johns Hopkins University.

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Prognosis and Quality of life of Obstetric Fistula Patients in Bangladesh

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  1. Prognosis and Quality of life of Obstetric Fistula Patients in Bangladesh Saifuddin Ahmed Rene Genadry Bloomberg School of Public Health Johns Hopkins University

  2. Prognosis, Improvements in Quality of life and Social Integration of Women with Obstetric Fistula following Surgical RepairMulti-country Collaborative StudyUNFPAJHU

  3. Study Objectives Aim 1: A prospective study to examine long-term prognosis of surgical treatment Successful repair:defined as both closure AND no incontinence confirmation (with dye test) Obstetric fistula severity anatomical location complexity presence of scarring multiple organ involvements duration since onset size of fistula

  4. Study Objectives Aim 2a: To examine the changes in Quality of Life (QOL) before and after the surgical repair. Aim 2b: To compare the Quality of Life of women with fistula across: severity/complexity of injury failed repair cases non-repairable cases

  5. Study Objectives Aim 3a: To identify familial, social and community enabling factors that assist women who have received surgical repair in: social rehabilitation economic rehabilitation social reintegration Aim 3b: To identify social vulnerability and social stigma of fistula patients, and assess the needs of emotional, psychological and economic support after fistula surgery

  6. Study Site Bangladesh: National Fistula Center Dhaka Medical College Hospital

  7. Topics of discussion • Study design and population • Patient characteristics • Quality of Life (QOL) instruments • Pre- and post-surgical changes of QOL • Determinants of surgical failure • Lessons learned so far

  8. Study design: Observational Longitudinal Study • Pre-operative face-to-face survey interview (Baseline): information on socio-demographic characteristics, social status, marital/sexual history, pregnancy and obstetric history, maternity care, events around fistula development and treatment seeking, general and mental health, and quality of life. • Pre-operative clinical evaluations performed by surgeons and recorded in clinical form. • Surgical operative and daily post-operative progress notes recorded in medical records until discharge from the hospital. • Post-operative face-to-face exit interview at the time of discharge (~ 3 weeks after the surgery) to assess perceived opinion of the surgical result, current health status, and perceived quality of care received during hospital stay. • Three follow-up visits at 3, 6, 12 month intervals to assess long-term prognosis and improvement in quality of life. Clinical examination will be performed at each follow-up visit.

  9. Fistula Center • Inclusion: • Primary obstetric fistula • Previous failed repair • Non-repairable • Exclusion: • Follow-up not possible • Pregnancy • Recent occurrence • Iatrogenic • Not fit for surgery

  10. Bangladesh Study • 204 cases evaluated Major causes of non-enrollment : • Total Abdominal Hysterectomy -28 patients. • Repair of complete perineal tear -1 patient. • Vaginal Hysterectomy – 2 patients • Unwilling to return for fup 4 • Age less than 15 years -2 • Vaginal stenosis -5 • Traumatic injury due to cyclone- 1 • Stress Incontinence -4 • Mental problem -1 • Insertion of foreign body into Vagina -1 • Chemotherapy -1 • Hematocolpos due to vaginal agenesis- 1 • Post coital ( Rectal fistula)- 1 • Other-2 • 150/150 –target/enrolled • 150 – discharged Follow-up results 3 months: 145 (96.7%) 6 months: 143 (95.3%) 12 months: 142 (94.7%) 1 patientdied between 3-6mo

  11. Residence Locations of Patients

  12. Sample characteristics

  13. A large number of older patients

  14. Delay in seeking surgical care

  15. Age at which fistula developed

  16. Time lag for Surgical Care • 27.6% sought care within 3 months of developing fistula • 21% sought care after 5 years

  17. Reasons for not seeking care • Lack of availability of surgeons: 44.2% • Lack of knowledge that surgery would help: 43.0% • Too expensive: 7.0% • Lack of family support: 2.3%

  18. Success rate of closure by delay in seeking care • Success rare of closure: 73% if repaired within 3 months • Success rate of closure: 43% if repaired after five years • The odds of success rate was lower among women who did not seek care within 3 months (adjusted odds-ratio [OR]: 0.39; 95% CI: 0.15-0.97) • The odds of success probability diminishes further for those who had significantly delayed care for more than 5 years (adjusted OR: 0.29; 95% CI: 0.09-0.93)

  19. Missed opportunities for prevention <20% women deliver at health facilities in Bangladesh

  20. Clinical and QOL distribution

  21. Depression/Anxiety

  22. Quality of Life Assessment: Challenges and Opportunities I-QOL (ICI) and ICS-QoL (ICS), were specifically developed to assess QOL among patients with incontinence - suitable for stress and urge incontinence patients The Short Form-36 Health Survey (SF-36) instrument and General Health Questionnaire (GHQ-28) – generic QOL instruments None suitable as stand alone for OF patients Testing OF-QOL instrument Psychologists Without Borders – provided feedback on the QoL instrument

  23. Dimensions of quality of life of OF patients examined • Physical functioning • Role limitations due to physical/mental health • Symptoms /discomforts • General health perceptions/nutritional status • Family relationships • Emotions/mental status, including depression and stigma • Frustration, anger

  24. Quality of life instrument • How satisfied are you with your health? ______ • How satisfied are you with your sleep? _____ • How satisfied are you with your ability to perform your daily living activities? ______ • How satisfied are you with your capacity for work? ______ • How satisfied are you with yourself? _____ • How satisfied are you with your bodily appearance? ______ • How satisfied are you with your personal relationships? ______ • How satisfied are you with your sex life? ______ • How satisfied are you with the support you get from your husband [partner]? ______ • How satisfied are you with the support you get from your friends and family? ______ • How satisfied are you with your ability to provide support to others? ________ • How satisfied are you with your ability to talk about your condition with friends and family? ____ • How satisfied are you with your access to health services? _____ (Code: 1 = Very Satisfied; 2 = Satisfied; 3 = Neither Satisfied nor Dissatisfied; 4 = Dissatisfied; and 5 = Very Dissatisfied.)

  25. Quality of life(stigma) • I feel I have been treated with less respect than others. ____ • I feel others avoid me. ____ • I feel set apart from others in my community. ____ • I feel lonely more often than usual. ____ • Changes in my appearance have affected my social relationship. ____ • People in my community could not possibly understand me. ____ • I am embarrassed or ashamed. ____ • People discriminate against me. ____

  26. Cronbach’s alpha: quality of life instrument . alpha q3511* q3514* q3519* q3520* q3541* Average interitem correlation: 0.2649 Number of items in the scale: 40 Scale reliability coefficient: 0.9351 King’s Hospital Health Questionnaire for incontinence

  27. Pre-post Surgical Changes in Quality of Life Scores (with 95% CI) Post-surgical scores Pre-surgical score

  28. Discriminate Analysis of QoL . Two-sample t test with equal variances ------------------------------------------------------------------------------ Group | Obs Mean Std. Err. Std. Dev. [95% Conf. Interval] ---------+-------------------------------------------------------------------- Success| 69 157.1014 3.339433 27.73941 150.4377 163.7652 Failed | 58 81.18966 1.772864 13.50173 77.63956 84.73975 ---------+-------------------------------------------------------------------- Pr(|T| > |t|) = 0.0000 Quality of lives remain significantly low among failed cases

  29. JHU/UNFPA QOL instrument • Reliable (Cronbach’s alpha: 0.94) • Consistent • Reproducible • Sensitive • More specific

  30. Some Clinical Data

  31. Type of VVF(initial assessment)

  32. Type of VVF(assessed under anesthesia)

  33. VVF Closing procedure

  34. Risk factors for closure failuresVaginal factors

  35. Risk Factors for Closure FailuresVaginal Scarring

  36. Risk factors for Closure FailuresUrethral Involvement

  37. Risk Factors for Closure Failures

  38. Social support

  39. Counseling

  40. Additional Quality of Care Dimensions

  41. Study Population • Representative of the country’s geography • Includes a broad spectrum of fistula patients • Representative of the care provided in the national fistula center

  42. Useful Interventions • Delay in seeking care • Missed opportunities for prevention • Hospital delivery • Cesarean section • Labor duration: referral linkage • Good QoL instrument for initial assessment and follow-up • Psychological counseling • Social support is still weak

  43. Acknowledgement • Prof. SayebaAkhter • UNFPA Bangladesh • Dept. of Obs/Gyn, DMCH • ICDDR,B

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