The Dutch-Flemish PROMIS Assessment Center

1. The Dutch-Flemish PROMIS Assessment Center Dr. Caroline Terwee Dutch-Flemish PROMIS group VU University Medical Center Department of Epidemiology and Biostatistics

2. Conflict of interest statement • We received financial support fromthe Dutch Arthritis Association andthe Dutch Physiotherapy Association.

3. Content • Dutch-Flemish PROMIS experiences, challenges and lessons learned • Different ways of using PROMIS in the Netherlands and Flanders

4. The Dutch-Flemish PROMIS experience Oct 2006: ISOQOL meeting Lisbon Leo and Caroline: “Dave, we want to translate PROMIS into Dutch” Dave: “OMG, please come back in 2 years!”

5. The Dutch-Flemish PROMIS experience Oct 2008: ISOQOL meeting Montevideo Leo and Caroline: “Dave, we still want to translate PROMIS into Dutch” Dave: “OK, let’s do it”

6. Dutch-Flemish PROMIS group • Caroline B Terwee, VU University Medical Center, Department of Epidemiology and Biostatistics, Amsterdam, the Netherlands • Leo D Roorda, Reade, Center for Rehabilitation and Rheumatology, Amsterdam, the Netherlands • Henrica CW de Vet, VU University Medical Center, Department of Epidemiology and Biostatistics, Amsterdam, the Netherlands • Joost Dekker, VU University Medical Center, Department of Rehabilitation Medicine and Department of Psychiatry, Amsterdam, the Netherlands • Rene Westhovens, Catholic University Leuven, Department of Rheumatology, Leuven, Belgium • Jaap van Leeuwen, CEO Leones Group bv, Amsterdam, the Netherlands • Maarten Boers, VU University Medical Center, Department of Epidemiology and Biostatistics, Amsterdam, the Netherlands

7. Dutch-Flemish pediatric PROMIS group • LotteHaverman, Emma Children's Hospital, Academic Medical Center, Amsterdam, the Netherlands • Martha Grootenhuis, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands • Hein Raat, Department of Public Health, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands • Marion van Rossum, Emma Children’s Hospital and Reade, Center for Rehabilitation and Rheumatology, Amsterdam, The Netherlands • Eline van Dulmer-den Broeder, VU University Medical Center, Department of Paediatrics, Amsterdam, the Netherlands • Karel Hoppenbrouwers, Youth Health Care, KU Leuven, Leuven, Belgium

8. Translation Requirements: • Grant fortranslation: difficulttofind €100.000for translating 26 item banks(Dutch ArthritisAssociation) • Permissionfrom PHO to translate PROMIS usingapprovedtranslationmethodology (FACIT trans) • Time: 1.5 yearsfor translating 26 item banks, includingcognitivedebriefing • Participate in thetranslation as reviewer !

9. Dutch-Flemish PROMIS item banks

11. Validation PROMIS International group 2014: Minimum requirements for the release of PROMIS instruments after translation and recommendations for further psychometric evaluation

12. Validation

13. Dutch-Flemish Validation • Each item bank shouldbecalibrated in a relevant sample of at least 1000 patients • Collaborative effort • 15 validation studies • Cross-sectional studies, including full item banksandlegacyinstruments • Patient recruitment throughhospital records • Reference scores forthe Dutch generalpopulationfor 11 item banks

14. Calibration analysis Need psychometric expertise Standardize analyses across item banks PROMIS class • 8 people each analyzed one item bank • 1 psychometrician prepared R codes • Normal (probit) Graded Response Model (LAVAAN) • WLS estimations on polychorical correlations • Scaled fit statistics (CFI, TLI, RMSEA) • Local dependence, monotonicity, DIF • T-scores, reliability • Meeting once a week to discuss output and answer questions

15. Dutch-Flemish validation studies

16. Implementation PHO recommends to set up one PROMIS National Center in each country Dutch-Flemish PROMIS Foundation MISSION: toimprovethequality of health care and research bydeveloping, translating, validating, improving, andstimulatingtheuse of Dutch-Flemish PROMIS instrumentsandotherinnovative, top quality, measurementinstruments in research andclinicalpractice

17. A PROMIS National Center will … • .. have the exclusive rights to distribute PROMIS materials in its country (PHO also retains the right) • .. be responsible for coordinating all translation efforts performed in its country to ensure one unique translation per language • .. beresponsiblethatthe most up to date versions of the PROMIS materials are distributedandsynchronizedwith a central PHO library • .. encouragewidespreaduse of PROMIS andeducatepeopleaboutthevalue of IRT, CATsand PROMIS, e.g. through workshops and symposia • .. set up a sustainable model to make PROMIS instrumentsavailablenowand in thefuture at low costs (notonlyforprofit)

18. Dutch-Flemish Assessment Center All PROMIS materialswillbe made availableforuse in the Netherlands andFlandersthrougha private notonlyforprofit company: Dutch-FlemishAssessment Center (part of the Dutch-Flemish PROMIS foundation) • Dutch-Flemish Assessment Center • Instrument library (PROMIS and other instruments) • CAT engine– developed in R • Connections of CAT engine to other PRO data collection systems (e.g. Vital Health) • Research Data Management system to set up studies • Patient website for self-monitoring

19. Meet us in Amsterdam