4th International Congress on Endometriosis

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4th International Congress on Endometriosis

• Roma
• 28-30 May 2009 Are Endometriosis Guidelines
  following the Guidelines?

Judy Birch Pelvic Pain Support Network
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Project background

• IAPO Global Patients Congress Budapest Feb
  2008
• Clinical guidelines - lack of multi-disciplinary
  and patient input in clinical guideline
  development with a focus on Chronic Pelvic Pain
  and Endometriosis
• Twinning partnership PPSN and WFIP with IAPO
  support

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What we did

• Supported by 13 patient organizations ( IC,
  Endometriosis, Infertility, Vulval Pain,
  Continence and Gynaecology) from 8 countries
• 8 National, European and International guideline
  development bodies. Included copies of the AGREE
  Instrument and IAPO policy statement and
  guidelines on patient involvement

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Endometriosis guidelines
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Graphs taken from Appleyard T.L., et. al.,
(2006) Systematic review Guidelines for the
management of pelvic pain associated with
endometriosis a systematic appraisal of their
quality BJOG 11374975.
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NICE

• National Institute of Health and Clinical
  Excellence
• Multi-disciplinary and patient involvement
• NHS evidence new part of NICE

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• France 2006
• Endometriosis guidelines published 2007 working
  group- Gynaecologists, radiologists. Reviewers-
  Gynaecologists, radiologists, anaesthetist,
  colo-rectal, patient preferences
• Other countries Germany

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Conclusion

• Greater attention to the guideline development
  process to improve performance against the AGREE
  instrument criteria for stakeholder involvement
  multi-disciplinary and patient involvement,
  applicability and editorial independence
• Guideline development bodies should take account
  of the IAPO policy statement and guidelines for
  patient involvement in this process
• The project is supported by an increasing number
  of patient organizations and clinicians.
• Extend to other clinical areas in due course

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Project Partners

• ARACI (Argentina) IBPF (Netherlands)
• GAIN (Australia) ICP (Netherlands)
• ACCESS (Australia) ICA (USA)
• ICA (Austria ) NAFC (USA)
• EndoFrance COB Foundation (UK)
• CI (France) Vulval Pain Society (UK)
• AICI (Italy) IcSI (International
  Infertility )