1. 1 Does it make a difference for the patient? Survival & Quality of life  Jan J. v. Busschbach, Ph.D.  Erasmus MC Institute for Medical Psychology and Psychotherapy  Viersprong Institute for studies on Personality Disorders  Presentations can be found at:  www.xs4all.nl/~jannetvb/busschbach/

2. 2 Most simple recipe..  Count the survival days  SF-36  EuroQol EQ-5D

3. 3 Outcome research SF-36 EQ-5D

4. 4 Sensitivity  Generic instruments  Like SF-36 and EQ-5D  Not necessarily sensitive for intervention  Disease specific quality of life instruments  More sensitive  But comparisons with other disease difficult Not sensible in outcome research and health economics

5. 5 Outcome research SF-36 EQ-5D Specific

6. 6 Specific instruments  Last option  Develop it your self….  Desperate option  Find one on the internet, PubMed etc….  To many, non at all or just not what you want…  THE way to do it:  Ask the opinion leaders  What is used most on congresses?  What would be a good translation of the effect for the clinicians?

7. 7 Examples  MMSE  The Mini Mental State Examination  IPSS  International Prostate Symptom Score  They have a horrible psychometric make up  But they communicate your messages  Clinicians ‘know’ the score by heart

8. 8 A full, but simple recipe...  Count the survival days  SF-36  EuroQol EQ-5D  To calculate QALYs  A disease specific measure  Ask the physician

9. 9 Alternatives for SF-36  Other ‘hot’ generic list  WHOQOL  Domain specific offspring of the SF-36  EORTC C30  FACT Cancer, have additional disease specific modules Can be expected to be more sensitive than generic lists Reduces the need for specific measures

10. 10 Alternatives for EQ-5D  Must be able to generate QALYs  Health Utility Index  Own valuation of health states  Increase of sensitivity  Make sure that these are societal values… Otherwise no QALY from societal perspective  Other instruments or adaptations  EQ-5D+cog  SF-6D (derived from SF-36)  AQoL

11. 11 A simple menu  Count the survival days  SF-36, WHOQOL  or domain specific instruments like EORTC C30  EQ-5D, HUI, own validation  EQ-5D+, SF-6D, AQoL  A disease specific measure  Ask the physician