1. 1 Monitoring Quality of Life in the Clinic Prof. dr. Jan van Busschbach Medical Psychology and Psychotherapy Erasmus MC

2. Quality of life measurement suggested for use in the clinic  Bradley J, 1999  The adaptations of a quality of life questionnaire for routine use in clinical practice: the Chronic Respiratory Disease Questionnaire in cystic fibrosis  Backman JW, 2003  The patient-computer interview: a neglected tool that can aid the clinician.  Adam B, 2007  Measuring social difficulties in routine patient-centred assessment: a Rasch analysis of the social difficulties inventory 2

3. 3 Congresses  Applications of health status assessment measures in clinical practice.  Med Care. 1992 May;30(5 Suppl):MS1-14  ISOQOL Conference on Patient Reported Outcomes in Clinical Practice  June 24-26, 2007, Budapest, Hungary

4. 4 An everlasting lasting promise  Budapest Conference  Aaronson & Snyder. ISOQOL Newsletter July 2007  Improves patient doctor communication  No clear influence on patient management  In fact... little research  Publication bias?

5. 5 What stops us?  Complex logistics  Does it fit the clinical setting et al?  Molla Donaldson  ….simply urging clinicians to use PROs would not achieve large-scale adoption and that the systems in which clinicians work must be considered ISOQOL Newsletter July 2007  Is there no success at all?

6. 6 Routine screening tools seem to be beneficial in pain

7. Monitoring psychotherapy 7

8. Results in psychotherapy

9. 9 Monitoring in Quality of Life  De Man, Darlington, Gutteling  Department of Gastroenterology and Hepatology  162 patients with chronic liver disease  Computerised administration  SF-12  Disease specific instrument  11 physicians randomly assigned  Feedback, no feedback

10. Real Time Feedback 10

11. Results 11  Patients  No direct effect of feedback …on quality of life  No difference in patient satifaction  But with feedback  Older patients with feedback held better scores Interaction effect on mental health and disease specific  Male patients Interaction effect on mental health  Physicians  Altered treatment policy more often  Were positive about feedback

12. 12 Limitation  Difficulty recruiting patients  1850 patients invited  1263 turned invitation down  Logistic complications  244 did not show up at the computer (in time)  146 only 1 administration  Subgroup results...

13. Lessons learned  Logistics is everything!  RCT hampers clinical logistics  Replace by routine outcome monitor  But it might work…  Quality of Life  Treatment policy 13

14. New investigation  Inflammatory bowel disease  Zuzana Zelinkova  Dr. Janneke van der Woude  Feedback on Quality of life  Inflammatory Bowel Disease Questionnaire (IBDQ]?  SF-36?  Or make disease specific questionnaire?  What is important for the patients?  Outcome  Influence on treatment policy  Patient doctor communication 14

15. Conclusions  Feedback seems useful  From theory  From empirical evidence  Logistics are an obstacle  But somewhere out there is the future… 15