1. Care of PD Patients in Europe - Healthcare Utilization and Health-Related Quality of Life EuroPa WP 5 Richard Dodel Friedrich-Wilhelms-University Bonn

2. Project leader: Richard Dodel PhD Student:Sonja v. Campenhausen, PharmD Funding:1/2 Person for 18 months

3. Objective 1Desk Research Systematic review of healthcare utilization and health-related quality of life in PD patients Objective 2Field Research Evaluation of healthcare utilization and health-related quality of life of PD patients Current Status: WP5

4. Objective 1 Desk Research 1. Systematic review of care of PD patients in Europe 2. Systematic review of cost-effectiveness studies in PD (supported by the German Competence Network Parkinson-Syndromes) Current Status: WP5

5. 1. Systematic review of care of PD patients in Europe Question: How is the care of PD patients organized in the different European countries ? Methods: PubMed, Premedline Healthcare organizations Support groups, Insurances, WWW own files 17 Public Health journals were handscreened from January 1995 - June 2003 Review Process: 1. S. v Campenhausen 2. K. Berger (Economist) 3. R. Dodel 4. R. Wick 5. U. Siebert (Epidemiologist) 6. Country-specific project leader 7. Country-specific economist Objective 1 Desk Research

6. Current Status: - finished 6/2003 - send out for review 7/2003 - send out for review 7/2003 - finished 8-9/2003 publication as book publication as article Objective 1 Desk Research

7. 2. Systematic review of cost-effectiveness studies in PD (supported by the German Competence Network Parkinson-Syndromes) Question: What are the modeling strategies in cost- effectiveness studies for PD ? Methods:9 CE studies were found according to the recommendations of ISPOR panel for CE studies we developed a questionnaire for assessment Results:Cabergoline, Entacapone, Pramipexole, Ropinirole, DBS three different modeling strategies no all encompassing PD model; only certain clinical symptoms included in the model Status:finished 7/2003 Objective 1 Desk Research

8. Objective 2 Field Research (since 2/2003) 1. First European prospective cost of illness study Evaluation of health care utilization and health-related Qol Why ?No information on burden of PD (F, G, UK, S) No comparison possible No cost-effectiveness studies possible (fourth hurdle) No modeling studies possible No HRQoL Prioritization of future care of PD patients in Europe Current Status: WP5

9. 1. Evaluation of health care utilization and health-related Qol - direct, indirect costs - evaluation of HRQoL, utilities Design: - all patients who were evaluated with the MDS will be included - 10 centers - 100 patients per country (20 patients per HY stage) - a questionnaire is sent to the patients or filled out when patients are evaluated Objective 2 Field Research

10. CRF: three parts clinical data from the minimal data set clinical data from the minimal data set patient questionnaire (adapted for each country) patient questionnaire (adapted for each country) (will be filled out by the patient; can be mailed to the patient) patient diary (adapted for each country) patient diary (adapted for each country) (will be filled out by the patient; can be mailed to the patient) Study Design Status:- questionnaire in English already available; - will be translated and adapted by the country- specific economist

11. Economists AustriaP. Pfeiffer, Innsbruck ? Czech Republic:? France:C. LePen, Paris GermanyK. Berger, MERG Munich Italy:L. Mantovani, Milano The Netherlands:K. Severens, Rotterdam Portugal:? Spain:J. Rovira, Barcelona Sweden:B. Jönsson UK:P. Davey ? Study Design

12. Benefit What is your benefit ? 1. Data on burden of PD on a country-specific and European level (data are comparable !) 2. Full data set 3. Fourth hurdle: data for economic evaluations (CE studies) Publications: 1. Publication of Pan-European data:co-authorship 2. Publication of country-specific datafirst authorship 3. Publication on HRQoL Pan-European dataco-authorship 4. Publication on HRQoL: country-specific datafirst author Financial support ?

13. Barcelona 7/2003: further funding ? Novartis 1/2004 120.000-130.000 50 per complete data set(1000 PD) 50.000 50 per complete data set(1000 PD) 50.000 Data handling (coordination center for clinical studies)~ 40.000 Data entry (students; 2x)~ 5.000 PhD student 6 months (10/2003) 15.000 Overhead University (10%) 12.000 122.000 122.000 Funding of the study