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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Presentation transcript:

4th International Congress on Endometriosis Roma May 2009 Are Endometriosis Guidelines following the Guidelines? Judy Birch Pelvic Pain Support Network

Project background IAPO Global Patient’s 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 4th International Congress on Endometriosis

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 4th International Congress on Endometriosis

Endometriosis guidelines 4th International Congress on Endometriosis

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 113:749–75.

National Institute of Health and Clinical Excellence Multi-disciplinary and patient involvement NHS evidence – new part of NICE 4th International Congress on Endometriosis NICE

France – 2006 Endometriosis guidelines published 2007– working group- Gynaecologists, radiologists. Reviewers- Gynaecologists, radiologists, anaesthetist, colo-rectal, patient preferences Other countries – Germany 4th International Congress on Endometriosis

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 4th International Congress on Endometriosis

Project Partners ARACI (Argentina) IBPF (Netherlands) GAIN (Australia)ICP (Netherlands) ACCESS (Australia) ICA (USA) ICA (Austria ) NAFC (USA) EndoFranceCOB Foundation (UK) CI (France) Vulval Pain Society (UK) AICI (Italy) IcSI (International – Infertility ) 4th International Congress on Endometriosis