Care of PD Patients in Europe - Care of PD Patients in Europe -

Healthcare Utilization and Health-Related Quality of LifeHealthcare Utilization and Health-Related Quality of Life

EuroPa EuroPa WP 5WP 5

Richard DodelRichard DodelFriedrich-Wilhelms-University BonnFriedrich-Wilhelms-University Bonn

Project leader: Project leader: Richard DodelRichard Dodel

PhD Student:PhD Student: Sonja v. Campenhausen, PharmDSonja v. Campenhausen, PharmD

Funding:Funding: 1/2 Person for 18 months1/2 Person for 18 months

Objective 1Objective 1 Desk ResearchDesk ResearchSystematic review of healthcare Systematic review of healthcare

utilization and health-related utilization and health-related quality of quality of life in PD patients life in PD patients

Objective 2Objective 2 Field ResearchField ResearchEvaluation of healthcare utilization Evaluation of healthcare utilization

and and health-related quality of life of PD health-related quality of life of PD patients patients

Current Status: WP5

Objective 1Objective 1 Desk ResearchDesk Research

1. Systematic review of care of PD patients in Europe1. Systematic review of care of PD patients in Europe

2. Systematic review of cost-effectiveness studies in 2. Systematic review of cost-effectiveness studies in PD PD

(supported by the German Competence Network Parkinson-Syndromes)(supported by the German Competence Network Parkinson-Syndromes)

Current Status: WP5

1. Systematic review of care of PD patients in Europe1. Systematic review of care of PD patients in Europe

Question: Question: How is the care of PD patients organized in How is the care of PD patients organized in the different European countries ?the different European countries ?

Methods: Methods: PubMed, Premedline PubMed, Premedline Healthcare organizationsHealthcare organizationsSupport groups, Insurances, WWWSupport groups, Insurances, WWWown filesown files17 Public Health journals were handscreened 17 Public Health journals were handscreened

from January 1995 - June 2003from January 1995 - June 2003

Review Process: Review Process: 1. S. v Campenhausen1. S. v Campenhausen2. K. Berger (Economist)2. K. Berger (Economist)3. R. Dodel3. R. Dodel4. R. Wick 4. R. Wick 5. U. Siebert (Epidemiologist)5. U. Siebert (Epidemiologist)6. Country-specific project leader6. Country-specific project leader7. Country-specific economist7. Country-specific economist

Objective 1Objective 1 Desk ResearchDesk Research

Current Status: Current Status: - - finished 6/2003finished 6/2003 - send out for review 7/2003- send out for review 7/2003- finished 8-9/2003 - finished 8-9/2003

publication as bookpublication as bookpublication as articlepublication as article

Objective 1Objective 1 Desk ResearchDesk Research

2. Systematic review of cost-effectiveness studies in 2. Systematic review of cost-effectiveness studies in PD PD (supported by the German Competence Network Parkinson-Syndromes)(supported by the German Competence Network Parkinson-Syndromes)

Question: Question: What are the modeling strategies in cost-What are the modeling strategies in cost-effectiveness studies for PD ?effectiveness studies for PD ?

Methods:Methods: 9 CE studies were found9 CE studies were foundaccording to the recommendations of ISPOR according to the recommendations of ISPOR

panel for CE studies we developed a panel for CE studies we developed a questionnaire for assessmentquestionnaire for assessment

Results:Results: Cabergoline, Entacapone, Pramipexole, Cabergoline, Entacapone, Pramipexole, Ropinirole, DBSRopinirole, DBS

three different modeling strategiesthree different modeling strategiesno all encompassing PD model; only certain no all encompassing PD model; only certain

clinical symptoms included in the modelclinical symptoms included in the model

Status:Status: finished 7/2003finished 7/2003

Objective 1Objective 1 Desk ResearchDesk Research

Objective 2Objective 2 Field Research (since 2/2003)Field Research (since 2/2003)

1. First European prospective cost of illness study 1. First European prospective cost of illness study Evaluation of health care utilization and health-Evaluation of health care utilization and health-

related Qolrelated Qol

Why ?Why ? No information on burden of PD No information on burden of PD

(F, G, UK, S)(F, G, UK, S)

No comparison possibleNo comparison possible

No cost-effectiveness studies possible („fourth No cost-effectiveness studies possible („fourth

hurdle“)hurdle“)

No modeling studies possibleNo modeling studies possible

No HRQoL No HRQoL

Prioritization of future care of PD patients in Prioritization of future care of PD patients in

EuropeEurope

Current Status: WP5

1. 1. Evaluation of health care utilization and health-Evaluation of health care utilization and health-related Qolrelated Qol

- direct, indirect costs- direct, indirect costs

- evaluation of HRQoL, utilities- evaluation of HRQoL, utilities

Design: Design: - all patients who were evaluated with the MDS - all patients who were evaluated with the MDS

will bewill be includedincluded

- 10 centers- 10 centers

- 100 patients per country (20 patients per HY - 100 patients per country (20 patients per HY

stage)stage)

- a questionnaire is sent to the patients or filled - a questionnaire is sent to the patients or filled

out out when patients are evaluatedwhen patients are evaluated

Objective 2Objective 2 Field ResearchField Research

CRF: three partsCRF: three parts

clinical data from the minimal data setclinical data from the minimal data set

patient questionnaire (adapted for each patient questionnaire (adapted for each country)country)

(will be filled out by the patient; can be mailed to the (will be filled out by the patient; can be mailed to the patient)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 (will be filled out by the patient; can be mailed to the

patient)patient)

Study Design

Status:Status: - questionnaire in English already available;- questionnaire in English already available;

- will be translated and adapted by the country-- will be translated and adapted by the country-

specific economistspecific economist

EconomistsEconomists

AustriaAustria P. Pfeiffer, Innsbruck ?P. Pfeiffer, Innsbruck ?Czech Republic:Czech Republic: ??France:France: C. LePen, ParisC. LePen, ParisGermanyGermany K. Berger, MERG Munich K. Berger, MERG Munich Italy:Italy: L. Mantovani, MilanoL. Mantovani, MilanoThe Netherlands:The Netherlands: K. Severens, RotterdamK. Severens, RotterdamPortugal:Portugal: ??Spain:Spain: J. Rovira, BarcelonaJ. Rovira, BarcelonaSweden:Sweden: B. JönssonB. JönssonUK:UK: P. Davey ?P. Davey ?

Study Design

Benefit

What is your benefit ?What is your benefit ?

1. Data on burden of PD on a country-specific and European level 1. Data on burden of PD on a country-specific and European level

(data are comparable !)(data are comparable !)

2. Full data set2. Full data set

3. „Fourth hurdle“: data for economic evaluations (CE studies)3. „Fourth hurdle“: data for economic evaluations (CE studies)

Publications:Publications:

1. Publication of Pan-European data:1. Publication of Pan-European data: co-authorshipco-authorship

2. Publication of country-specific data2. Publication of country-specific data first authorshipfirst authorship

3. Publication on HRQoL Pan-European data3. Publication on HRQoL Pan-European data co-authorshipco-authorship

4. Publication on HRQoL: country-specific data4. Publication on HRQoL: country-specific data first authorfirst author

Financial support ? Financial support ?

Barcelona 7/2003: further funding ?Barcelona 7/2003: further funding ?

Novartis 1/2004Novartis 1/2004 € 120.000-€ 120.000-130.000130.000

€ € 50 per complete data set50 per complete data set (1000 PD)(1000 PD) € € 50.00050.000

Data handling (coordination center for Data handling (coordination center for clinical studies)clinical studies) ~€ ~€

40.00040.000Data entry (students; 2x)Data entry (students; 2x) ~€ ~€

5.0005.000PhD student 6 months (10/2003)PhD student 6 months (10/2003) € €

15.00015.000Overhead University (10%)Overhead University (10%) € 12.000€ 12.000

€ € 122.000122.000

Funding of the study