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/
1
Most simple recipe..
 Count
the survival days
 SF-36
 EuroQol
EQ-5D
2
Outcome research
Clinical research Outcomes research
Health economics
Main aim
Efficacy (in theory)
Effectiveness (in practice)
Efficiency (in practice)
Study design
RTC
Observational and RTC
Observational and RTC
Main
measures
Efficacy and safety
Clinical end points
Patient related end points:
Quality of life and survival
Cost in relation to patient
related outcomes: QALYs
Population
Ideal clinical practice
Normal clinical practice
Normal clinical practice
EQ-5D
SF-36
3
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
4
Outcome research
Clinical research Outcomes research
Health economics
Main aim
Efficacy (in theory)
Effectiveness (in practice)
Efficiency (in practice)
Study design
RTC
Observational and RTC
Observational and RTC
Main
measures
Efficacy and safety
Clinical end points
Patient related end points:
Quality of life and survival
Cost in relation to patient
related outcomes: QALYs
Population
Ideal clinical practice
Normal clinical practice
Normal clinical practice
EQ-5D
SF-36
Specific
5
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?
6
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
7
A full, but simple recipe...
 Count
the survival days
 SF-36
 EuroQol
EQ-5D
 To calculate QALYs
A
disease specific measure
 Ask the physician
8
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
9
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
10
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
11
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Patient related outcomes - Index of