EU Joint Action: Achieving Comprehensive Coordination in Organ Donation throughout the European Union Work Package 5 – Increasing the collaboration between donor transplant coordinators and intensive care professionals FINAL REPORT April 2015 NEXT Contents Introduction Introduction .............................................................................................................................................3 Overview of the Project .......................................................................................................................4 Aims of the Project ...........................................................................................................................4 Participating Member States ..........................................................................................................4 Project Management and Governance .......................................................................................4 Timescales ..........................................................................................................................................6 Glossary ...............................................................................................................................................7 Executive Summary and Recommendations 1. Overview of WP 5.........................................................................................................................11 2. Part One ..........................................................................................................................................12 Deliverable 7: Variations in end-of-life care pathways for patients with a devastating brain injury in Europe .........................................................................................12 3. Part Two ..........................................................................................................................................17 Deliverable 8 Recommendations for improvement and toolkit methodology: systemic improvements in end-of-life care pathways to promote organ donation. a) Rapid Improvement Toolkit.....................................................................................................17 4. Part Three .......................................................................................................................................18 Deliverable 8 Recommendations for improvement and toolkit methodology: systemic improvements in end-of-life care pathways to promote organ donation. b) Toolkit Implementation Report ..............................................................................................18 5. Part Four Recommendations ..................................................................................................20 Part One Deliverable 7 Variations in end-of-life care pathways for patients with a devastating brain injury in Europe 1. Materials and Methods .............................................................................................................23 1.1 Study design ...........................................................................................................................23 1.2 Inclusion Criteria ....................................................................................................................23 1.3 Questionnaires .......................................................................................................................24 2. Results .............................................................................................................................................26 2.1 Country Questionnaire.........................................................................................................26 2.2 Hospital Questionnaire ........................................................................................................27 2.3 Patient Questionnaire ..........................................................................................................29 Final Report | Document Contents | April 2015 3. Univariate and Multivariate Analyses .................................................................................45 3.1 Methods ...................................................................................................................................45 3.2 Results ......................................................................................................................................48 3.3 Discussion ...............................................................................................................................52 4. Summary and Conclusions from Part One ........................................................................55 Appendices to Part One ....................................................................................................................56 Appendix 1: ICD 9 and ICD 10 Codes ........................................................................................56 Appendix 2: Country Questionnaire ..........................................................................................58 Appendix 3: Hospital Questionnaire ..........................................................................................61 Appendix 4: Patient Questionnaire ...........................................................................................62 Appendix 5: Step charts for the DBD and DCD pathway for individual Member States .....71 Appendix 6: Full Data from Multivariate Analyses .................................................................86 Appendix 7: Comparative Data for UK, Spain and Other Member States ......................92 Additiional Information on MS responses to the Country Questionnaire and additional Comments from the Clinical Reference Group are available in the Interim Report, March 2014. Part Two Deliverable 8 Recommendations for improvement and toolkit methodology: systemetic improvements in end-of-life care pathways to promote organ donation. a) A Rapid Improvement Toolkit 1. An introduction to improvement methodologies ........................................................ 101 2. Understanding the problem and its possible causes ................................................. 102 2.1 Stakeholder analysis .......................................................................................................... 102 2.2 Process mapping ................................................................................................................ 104 2.3 Root cause analysis ............................................................................................................ 106 2.4 Cause and effect analysis (Fishbone Diagrams) .......................................................... 106 3. Service improvement models – The Model for Improvement ................................. 108 3.1 What are we trying to achieve? ....................................................................................... 110 3.2 How will we know a change is an improvement? ....................................................... 110 3.3 What changes can we make that will result in the improvement we want? ........ 111 3.4 PDSA cycles to test change ideas ................................................................................... 111 4. Linking frontline changes to strategic objectives ........................................................ 113 5. Implementation, sustainabiliy and teamwork .............................................................. 116 Appendices to Part Two ................................................................................................................. 119 Appendix 1. Practical example of the service improvement methodology undertaken by one of the hospitals participating in ACCORD ................ 119 Appendix 2. English language service improvement resource........................................ 131 Appendix 3. Acknowledgements ............................................................................................ 132 Final Report | Document Contents | April 2015 Part Three Deliverable 8 Recommendations for improvement and toolkit methodology: systemetic improvements in end-of-life care pathways to promote organ donation. b) Implementation of a rapid improvement toolkit Report on the implementation of a rapid improvement toolkit .................................... 135 1. Methodology .............................................................................................................................. 135 2. Results .......................................................................................................................................... 136 3. Unresolved issues .................................................................................................................... 141 4. Increase in donation ............................................................................................................... 141 5. Examples ..................................................................................................................................... 141 6. Discussion ................................................................................................................................... 149 7. Appendices to Part Three ...................................................................................................... 150 Appendix 1: Template for PDSA reporting ..........................................................................