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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. Rene Genadry Abdul Quaiyum Ferdousi Islam Dalia Momtaz Saifuddin Ahmed. 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 Rene Genadry Abdul Quaiyum Ferdousi Islam Dalia Momtaz Saifuddin Ahmed 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 • 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 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. Validation of study instruments: Expert review

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

  8. Preliminary Qualitative Results • What design and population? • What patient characteristics? • What QOL instruments? • What factors in closure failure? • What lessons so far?

  9. Study design: Observational Longitudinal Study 1. 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. 2. 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. 5. 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.

  10. Admission form

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

  12. 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 • Irreparable-1 • 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-1 • 150/150 – enrolled/target • 150 – discharged

  13. Residence Locations of Patients

  14. Sample characteristics

  15. A large number of older patients

  16. Delay in seeking surgical care

  17. Age at which fistula developed

  18. Population Characteristics • Wide age range for surgery, younger age at occurrence but not exclusively • Rural • Obstructed labor • Married or separated

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

  20. Clinical and QOL distribution

  21. 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

  22. 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

  23. 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.)

  24. 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. ____

  25. 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

  26. Discriminate Analysis of QoL . ttestaqoc, by(q3419) Two-sample t test with equal variances ------------------------------------------------------------------------------ Group | Obs Mean Std. Err. Std. Dev. [95% Conf. Interval] ---------+-------------------------------------------------------------------- Prev. surgery | 49 .1640445 .0432668 .3028679 .0770507 .251038 No surgery| 101 .3254824 .0345216 .3469374 .2569926 .3939722 ---------+-------------------------------------------------------------------- combined | 150 .272746 .0278213 .3407397 .2177708 .3277212 ---------+-------------------------------------------------------------------- diff | -.1614379 .0580231 -.2760987 -.0467772 ------------------------------------------------------------------------------ diff = mean(1) - mean(2) t = -2.7823 Ho: diff = 0 degrees of freedom = 148 Ha: diff < 0 Ha: diff != 0 Ha: diff > 0 Pr(T < t) = 0.0031 Pr(|T| > |t|) = 0.0061 Pr(T > t) = 0.9969 by Number of Surgeries Undertaken ------------------------------------------------------------------------------ QoL Score | Coef. Std. Err. t P>|t| [95% Conf. Interval] -------------+---------------------------------------------------------------- | 1 | -.1443998 .0677833 -2.13 0.035 -.2783554 -.0104443 2+ | -.1935096 .0875968 -2.21 0.029 -.3666213 -.020398 | No surgery | .3254824 .0332485 9.79 0.000 .2597757 .3911891 ------------------------------------------------------------------------------

  27. QOL instrument-SF 40 • Reliable • Consistent • Reproducible • Sensitive • More specific

  28. Some Clinical Data Preliminary VVF

  29. Type of VVF(initial assessment)

  30. Type of VVF(assessed under anesthesia)

  31. VVF Closing procedure

  32. Risk factors for closure failuresVaginal factors

  33. Risk Factors for Closure FailuresVaginal Scarring

  34. Risk factors for Closure FailuresUrethral Involvement

  35. Risk Factors for Closure Failures

  36. Quality of Care • Coordinated social support • Counseling • Consent

  37. Social support

  38. Counseling

  39. Additional Quality of Care Dimensions

  40. 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

  41. Useful Interventions • Delay in seeking care • Missed opportunities for prevention • Hospital delivery • Cesarean section • Labor duration • Good QoL instrument for initial assessment and follow-up

  42. Negative Risk Factors • Urethral Involvement • Circumferential lesion • Short urethra • Severe vaginal scarring • Reduced vaginal mobility, pliability and accessibility

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

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