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The Pyramid of Disease

The Pyramid of Disease. Deaths. Severe Morbidity. Illness requiring medical care. Asymptomatic/ Self-care. Rare Obstetric Disorders – Why are they important?. Individually uncommon, together a considerable burden Difficult to study, under researched

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The Pyramid of Disease

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  1. The Pyramid of Disease Deaths Severe Morbidity Illness requiring medical care Asymptomatic/ Self-care

  2. Rare Obstetric Disorders – Why are they important? • Individually uncommon, together a considerable burden • Difficult to study, under researched • Clinical practice rarely based on robust evidence • “Near-miss” events

  3. “Near-miss” events “a severe life-threatening obstetric complication necessitating urgent medical intervention in order to prevent likely death of the mother”* • In countries where deaths are rare • Events associated with death may be atypical • Study of “near-miss” events may give more insight into risk factors and possible means of prevention *Filippi V, Ronsmans C et al. Stud Fam Plann. 2000 31(4):309-24

  4. Leading causes of direct deaths reported to CEMACH 2003-5 Source: Saving Mothers’ Lives 2003-5, Table 1.3

  5. UK Obstetric Surveillance System (UKOSS) • Monthly prospective case collection from obstetrician, midwife, obstetric anaesthetist and risk midwife (individualised by hospital) • Cohort or case control studies conducted as well as descriptive studies • Rolling programme of studies • Central data collection

  6. The UKOSS Reporting Card

  7. Data Collection Forms • Different for each study • No identifiable information requested • Completed from medical notes only • Content controlled • Forms may be sent again after delivery

  8. Data Feedback • Quarterly newsletters • Annual report • Peer-reviewed publications • Conference presentations • UKOSS website • http://www.npeu.ox.ac.uk/ukoss/

  9. Advantages of UKOSS • Can be used for a variety of studies • Lessens the burden of multiple requests for information from individual clinicians • Information used to make practical improvements in prevention, treatment and service planning • Studies can be rapidly introduced in response to conditions of emerging public health importance

  10. UKOSS Card Return Rates

  11. What conditions can be studied using UKOSS? • Disorder is an important cause of perinatal or maternal morbidity or mortality • Uncommon (<1 per 2000 births) • UKOSS methodology is suitable • Other data sources exist to assess or enhance ascertainment

  12. Study Application Procedure • Informal discussion with Clinical Coordinator • Outline applications discussed at management group (monthly) • Full applications discussed by Steering Committee (four-monthly meeting) • Investigators invited to attend Steering Committee meeting

  13. Completed Studies • 2009 • Therapies for Peripartum Haemorrhage • Multiple repeat caesarean section • Pregnancy in renal transplant recipients • 2010 • H1N1v influenza in pregnancy • Antenatal Stroke • Failed Intubation • Malaria • Congenital Diaphragmatic Hernia • Myocardial Infarction • Uterine Rupture 2006 • Eclampsia • Peripartum Hysterectomy • Acute Fatty Liver • Antenatal PE • TB 2007 • Gastroschisis 2008 • Extreme Obesity • FMAIT

  14. Current Studies • Amniotic Fluid Embolism • Aortic dissection • Myeloproliferative disorders • Pituitary tumours in pregnancy • Placenta Accreta • Pulmonary Vascular Disease • Obstetric Cholestasis • Non-renal Transplant recipients • Sickle cell disease

  15. Future Studies • In planning • HELLP syndrome • Epidural haematoma/abscess • Pregnancy post laparoscopic gastric band surgery • Pregnancy in heart valve recipients • Septicaemic shock • Pregnancy in women over 48

  16. Uses of UKOSS Data • Disease incidence/prevalence • Audit of guidelines/change in practice • Risk factors • Management techniques • Public health response • Outcomes

  17. 1. Incidence - Eclampsia • 214 confirmed cases • Incidence 2.7 per 10,000 (95% CI 2.4-3.1)‡ • Incidence in 1992 4.9 per 10,000 (95% CI 4.5-5.4)*† * p<0.0001 ‡Knight M on behalf of UKOSS 2007 BJOG 114: 1072-1078 †Douglas and Redman 1994 BMJ 309:1395-1400

  18. Risk Reductions *Not calculable †Magpie trial Lancet 2002 359: 1877-90 ‡Collaborative Eclampsia trial (Mg vs phenytoin) Lancet 1995 345: 1455-63

  19. 2. Guidelines – Antenatal PE • 143 cases identified • 9 women should have received LMWH according to RCOG guidelines • Only 3 (33%) did • 6 women had a PE following LMWH prophylaxis • 3 (50%) received lower than recommended doses • 3 received enoxaparin 40mg once daily Knight M on behalf of UKOSS 2008 BJOG 115: 453-461

  20. 3. Risk factors – Peripartum Hysterectomy

  21. Risk Factors:Previous Caesarean Section Adjusted OR (any previous CS) = 3.5 (95% CI 2.4-5.3)

  22. Risk Summary Knight et al on behalf of UKOSS 2008. Obstet Gynecol 111: 97-105

  23. 4. Management – Antivirals for H1N1 Yates, L. et al 2010. Health Technol Assess (in press)

  24. 5. Public Health Response – H1N1v influenza in pregnancy • Pregnant women hospitalised with confirmed H1N1v

  25. 6. Outcomes - obesity ‡ Adjusted for age, socioeconomic group, parity, ethnicity, smoking Knight et al 2010. Obstet Gynecol 115:989–97

  26. Anaesthetic outcomes *Unstable estimate aOR of GA for delivery = 6.4 (2.6-15.3)

  27. Summary • UKOSS is a unique national collaboration • The study of rare disorders, including ‘near-miss’ events using UKOSS gives additional value to complement CEMACH information • UKOSS studies can be used to investigate incidence, risk factors, management and outcomes of individual conditions, and audit guidelines • Many of these research questions cannot be answered using any other methodology • UKOSS studies would not be possible without the collaboration of clinicians throughout the UK

  28. Acknowledgements • UKOSS reporting clinicians • Funding • NIHR NCCRCD • Department of Health Policy Research Programme • NIHR HTA Programme

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