Use of patient-reported outcome and experience measures in patient care and policy
Authors: Desomer Anja , Van Den Heede Koen , Triemstra Mattanja , Paget John , de Boer Dolf , Kohn Laurence , Cleemput Irina 
Published: January 2025

SCIENTIFIC REPORT 10 -- 1 BACKGROUND AND SCOPE .10 -- 1.1 INTRODUCTION AND SCOPE 10 -- 1.2 A DESCRIPTION OF KEY CONCEPTS .11 -- 1.2.1 Patient reported outcomes measures 12 -- 1.2.2 Patient reported experiences measures 13 -- 1.2.3 Patient-centeredness, patient involvement and patient empowerment 14 -- 1.3 WHY MEASURING PATIENT-REPORTED OUTCOMES AND EXPERIENCES? 14 -- 2 EVIDENCE ABOUT IMPACT: A REVIEW OF REVIEWS .22 -- 2.1 INTRODUCTION .22 -- 2.2 OBJECTIVE 22 -- 2.3 METHOD .22 -- 2.4 RESULTS 23 -- 2.4.1 Search and inclusion 23 -- 2.4.2 Methodological assessment 23 -- 2.4.3 Impact on processes and outcomes 24 -- 2.4.4 Facilitators and barriers .31 -- 2.5 DISCUSSION 32 -- 3 INTERNATIONAL EXAMPLES AND LESSONS LEARNED 35 -- 3.1 CROSS-COUNTRY INITIATIVES 35 -- 3.1.1 ICHOM - International Consortium for Health Outcomes Measurement .36 -- 3.1.2 OECD initiatives 39 -- 3.1.3 The Commonwealth Fund 42 -- 3.1.4 PROMIS® - Patient-Reported Outcomes Measurement Information System 42 -- 3.2 IN-DEPTH COUNTRY STUDIES: RESEARCH QUESTIONS AND METHODOLOGY .45 -- 3.2.1 Research question 45 -- 3.2.2 Methods.45 -- 3.2.3 Outline of this chapter 47 -- 3.3 REPORT ON FRANCE 47 -- 3.3.1 French population and healthcare system 47 -- 3.3.2 Search results 48 -- 3.3.3 Expert consultation 48 -- 3.3.4 History of PROMs and PREMs in France 48 -- 3.3.5 Aims and stakeholders 49 -- 3.3.6 Selection or development of PROMs and PREMs .50 -- 3.3.7 Types of PROMs and PREMs implemented 50 -- 3.3.8 Measurement procedures, methods and response 50 -- 3.3.9 Analyses and presentation of results .51 -- 3.3.10 Actual use of the information .52 -- 3.3.11 Other lessons .52 -- 3.3.12 Summary of findings 53 -- 3.4 REPORT ON THE NETHERLANDS .53 -- 3.4.1 Dutch population and healthcare system .53 -- 3.4.2 Overview of the types of documents 53 -- 3.4.3 History of PROMs and PREMs in the Netherlands .54 -- 3.4.4 Aims and stakeholders 54 -- 3.4.5 Selection or development of PROMs and PREMs .55 -- 3.4.6 Types of PROMs and PREMs implemented 56 -- 3.4.7 Measurement procedures, methods and response 56 -- 3.4.8 Analyses and presentation of results .57 -- 3.4.9 Actual use of the information .57 -- 3.4.10 Other lessons .58 -- 3.4.11 Summary of findings 58 -- 3.5 REPORT ON THE UNITED KINGDOM 59 -- 3.5.1 Population and healthcare system 59 -- 3.5.2 Overview of the types of documents 60 -- 3.5.3 History of PROMs and PREMs in the United Kingdom 60 -- 3.5.4 Aims and stakeholders 63 -- 3.5.5 Selection or development of PROMs and PREMs .65 -- 3.5.6 Types of PROMs and PREMs implemented 66 -- 3.5.7 Measurement procedures, methods and response 66 -- 3.5.8 Analyses and presentation of results .67 -- 3.5.9 Actual use of the information .68 -- 3.5.10 Other lessons and expected future developments .69 -- 3.5.11 Summary of findings 70 -- 3.6 TRANSVERSAL ANALYSIS: LESSONS LEARNED FROM THREE COUNTRIES .71 -- 3.6.1 Different health systems and stages of implementation 71 -- 3.6.2 Comparable aims .73 -- 3.6.3 Different implementation strategies 74 -- 3.6.4 Various instruments and survey methods 75 -- 3.6.5 Similar challenges concerning data analysis and presentation of results 76 -- 3.6.6 Scarce evidence on the use and effects of PROMs/PREMs .79 -- 3.6.7 Lessons learned in the three countries .80 -- 3.6.8 Key messages for Belgium .81 -- 4 THE BELGIAN CONTEXT .83 -- 4.1 ONLINE SURVEY ABOUT BELGIAN INITIATIVES .83 -- 4.2 LESSONS LEARNT FROM A FEW BELGIAN CASE STUDIES 89 -- 4.2.1 General observations .90 -- 4.2.2 Purpose of PROM and PREM data collection 90 -- 4.2.3 Stakeholder involvement 92 -- 4.2.4 Data collection methods and sources 93 -- 4.2.5 Integration of data in electronic patient records and registries .94 -- 4.2.6 Measurement frequency 95 -- 4.2.7 Population 96 -- 4.2.8 Instruments .96 -- 4.2.9 Operational aspects 98 -- 4.2.10 Data analysis and feedback 99 -- 4.2.11 Impact . 100 -- 4.2.12 Barriers and facilitators . 100 -- 5 DISCUSSION AND CONCLUSION 104 -- REFERENCES . 105 -- APPENDICES 114