The role of patient involvement in the development and the dissemination of the ESPEN guidelines Stephan C Bischoff July 15 th 2019 ESPEN European Society for Clinical Nutrition and Metabolism ID: 1047153
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1. ESPEN Guidelines on Clinical NutritionThe role of patient involvement in the development and the dissemination of the ESPEN guidelinesStephan C. BischoffJuly 15th, 2019
2. ESPEN – European Society for Clinical Nutrition and MetabolismESPEN is dedicated to all issues relevant to the field of clinical nutrition and metabolism and promotes:basic and clinical researchbasic and advanced educationorganization of consensus statements about clinical care and care quality control ESPEN guidelines
3. Importance of patient involvementGrowing desire for understanding therapeutic proposalsBroader availability of informationLimited understanding of specialist terms Solution: Lay versionsGuidelines: should cover all aspects of a disease, not only the profesionals point of viewPatients‘ contribution adds value to guidelines
4. Current ESPEN GuidelinesDementiaChronic intestinal failureCystic fibrosisOncologyEthicsTerminologyIBDSurgeryPolymorbidNeurologyGeriatricsPediatricsICUHepatologyHome enteral nutrition Home parenteral nutrition Pancreas Nephrology Hospital FoodMicronutrients
5. Guideline development processWorking groupPatient/ProblemInterventionComparisonOutcomesCreation of PICO questionsLiterature search1+1++2-2+1-Literature grading according to SIGN** Scottish Intercollegiate Guidelines Network: SIGN 50: A guideline developer’s handbook. Quick reference guide October 2014 Generation of recommendationsOnline votingRevisionConsensus ConferenceFormal checkPublication& DisseminationFinalization of the guideline2++
6. Patient involvement in guideline developmentReview of topics and key questions (PICO’s) Are all necessary points from a patient‘s view addressed?Review of the recommendations Do the recommendations address the patient’s needs?Do the commentaries address the patient’s needs?Participation in the online discussions & votingAttendance of the Final Consensus Conference Or sending comments if the state of health does not allows personal participation
7. Current ESPEN GuidelinesDementiaChronic intestinal failureCystic fibrosisOncologyEthicsTerminologyIBDSurgeryPolymorbidNeurologyGeriatricsPediatricsICUHepatologyHome enteral nutrition Home parenteral nutrition Pancreas Nephrology Hospital FoodMicronutrients
8. Spreading knowledge on malnutrition across Europe – UEG grant 2018 -2020Short versions („Practical guidelines“National language versionsApp versionsLay versions / patient versions
9. Patient involvement in guideline dissemination (lay versions)„Practical Guidelines“ provided by ESPENTransformation by 2-3 patient representativesNo change of recommendations „Translation“ / explanation of recommendationsSimplification of the commentariesProof-reading by ESPENEnglish languageFuture plan: national languages
10. 10 ESPEN Guidelines selectedDementiaChronic intestinal failureCystic fibrosisOncologyEthicsTerminologyIBDSurgeryPolymorbidNeurologyGeriatricsPediatricsICUHepatologyHome enteral nutrition Home parenteral nutrition Pancreas Nephrology Hospital FoodMicronutrients
11. 10 ESPEN Guidelines selectedChronic intestinal failureOncologyIBDSurgeryPolymorbidNeurologyGeriatricsICUHepatologyHome enteral nutrition EU Cancer patients (ECPC), Isabelle Manneh
12. Thank you!Information: guidelines-office@espen.org