Rare Obstetric Disorders Why are they important

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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

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British Paediatric Surveillance Unit (BPSU)

• Well developed prospective mechanism for
  collecting cases of rare conditions from
  paediatricians
• Monthly card mailing
• Rolling programme of studies identified by
  clinicians
• Descriptive studies only
• Data collection by individual researchers

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BPSU outputs

• 200 peer-reviewed publications
• Examples
• Antenatal screening (policy decisions)
• Reyes syndrome and aspirin
• Chemistry set poisoning
• Emergency surveillance
• neonatal vitamin K, waterbirths, vCJD

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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
• Future electronic data collection

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How will UKOSS work?

• Rare disorders only
• Monthly card mailing
• Recipients individual to each unit
• Negative reporting scheme
• Data collection on reported cases
• Some studies also including controls
• Most studies will run for one year

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The UKOSS Reporting Card
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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
• Please feedback any problems with completion

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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

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Criteria for inclusion of studies

• Disorder is an important cause of perinatal or
  maternal morbidity or mortality
• Uncommon (lt1 per 2000 births)
• UKOSS methodology is suitable
• Other data sources exist to assess or enhance
  ascertainment

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Initial Studies

• Acute fatty liver
• Amniotic fluid embolism
• Antenatal pulmonary embolism
• Eclampsia
• Peripartum hysterectomy
• TB

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Acute Fatty Liver

• A leading cause of maternal mortality in the UK
• May be part of spectrum related to
  pre-eclampsia
• UK estimates of incidence vary 1/1000 to
  1/16,000, mortality approx 10
• No comprehensive study of epidemiology and
  management worldwide

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Amniotic Fluid Embolism

• A leading cause of maternal mortality in the UK
• 10 fold variation in estimates of incidence
• 5 fold variation in estimates of case fatality
• No clear risk factors
• No clear management strategy
• Previous voluntary register

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Antenatal Pulmonary Embolism

• Most important cause of maternal mortality in the
  UK
• No data on incidence, sequelae or management of
  non-fatal PE
• Near-miss event
• Guidelines for prophylaxis and management exist
  extent of use uncertain

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Eclampsia

• 5 of direct maternal deaths in UK
• National surveillance study in 1992
• Changes in management
• Potential means of monitoring changes in
  antenatal visit schedules

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Peripartum hysterectomy

• One of most major complications in modern
  obstetrics
• Related to significant maternal morbidity and
  mortality
• UK incidence estimates 1/1900 to 1/3700
• 10-20 fold increase in risk in women with
  previous caesarean section
• Concern in light of rising caesarean section rates

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TB

• Incidence is rising in the general UK population
• Identified as a priority infectious disease
• A case series (n13) has identified significant
  differences in the presentation in pregnancy
• All patients were recent immigrants
• Other issues
• HIV co-infection
• Antimicrobial resistance

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Timetable

• Jan-Feb 2005 Scheme publicity
• 11th Feb 2005 Launch meeting, RCOG London
• Mar 2005- Monthly mailings begin with ongoing
  rolling programme of studies.
• Mar 2006- Ongoing data analysis,
  dissemination of results of completed
  studies and consideration of new studies for
  inclusion in the scheme.

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Data Feedback

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

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For more information

• Please contact
• Dr Marian Knight (Clinical Coordinator)
• Mrs Carole Harris (Administrator)
• National Perinatal Epidemiology Unit
• University of Oxford
• Old Road Campus
• Oxford
• OX3 7LF
• Tel [phone]
• Fax [phone]
• Website www.npeu.ox.ac.uk/ukoss
• Email UKOSS_at_perinat.ox.ac.uk