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Angaben zum Forschungsprojekt

European Study of Clinical, Health economic and Quality of Life outcomes in Haemophilia treatment (ESCHQoL)

Ziel des Projektes ist es
- validierte Instrumente zur Beurteilung der Lebensqualität und des Gesundheitsstatus der Patienten sowie der Versorgung und ihrer Kosten auf europäischer Basis verfügbar zu machen
- Modelle der Versorgung von hämophilen Menschen auf der Grundlage klinischer Kennzeichen, möglicher Kosten und der Auswirkungen auf die Lebensqualität zu identifizieren
- Empfehlungen für die optimale Versorgung von Hämophiliepatienten auf der Grundlage von klinischen, lebensqualitätbezogenen und gesundheitsökonomischen Daten abzugeben.



Beginn:

01.03.2003


Abschluss:

30.09.2005


Art:

Gefördertes Projekt / Transnationales Projekt


Kostenträger:


Europäische Kommission



Weitere Informationen


Abstract

European Study of Clinical, Health economic and Quality of Life outcomes in Haemophilia treatment (ESCHQoL)

Haemophilia is a rare congenital disease, with an estimated prevalence of 0.7 in 10,000 inhabitants. It is due to an hereditary defect of one clotting factor protein that induces spontaneous and post-traumatic bleedings.
The treatment of haemophilic patients with factor VIII/IX requires a substantial amount of economical and human resources. Haemophilia and it's treatment have an impact on quality of life of haemophilic patients and the every-day life of their families. Haemophilia care can be taken as an example for the socio-economic impact of biotechnologies.
The ESCHQoL Study is an European Study in Clinical, Health Economic and Quality of Life Outcomes in Haemophilia Treatment. In this prospective study - funded by the European Commission - 2040 patients will be investigated in 22 European countries.
By documenting the current situation of haemophilia care in Europe and evaluating future scenarios, this study will allow to identify areas where improvements, and consequently human and economic investments, should be performed.

Study objectives:
- To make available validated instruments for assessment of patients' quality of life, health status and health care and its cost on an European basis
- To identify models of health care of haemophiliacs on the basis¤of clinical characteristics, their possible costs and impact on quality of life
- To make policy recommendations for optimal care of haemophilia patients on the basis of clinical, quality-of-life and health economic information

Inclusion criteria:
- Haemophiliacs 4 years of age or older
- Willingness to participate in the study
- Signed informed consent

Exclusion criteria:
- Inability to respond and understand the study material

Study Design:
Prevalence-based, longitudinal, retrospective/prospective observational study on quality of life and its costs. Haemophilic patients will be recruited from haemophilia comprehensive care centres (CCC) in 22 European countries. A cost of Illness Analysis, a cost Effectiveness Analysis and a Cost Utility Analysis will be performed.

Data collection instruments:
Medical documentation and health economic data will be assessed at baseline, referred to the 6-month period before enrolment into the study and at the end of the 6-month follow-up period. Every enrolled patient will record on a daily basis for six months any medical event. Generic and haemophilia-specific questionnaires will be used in order to assess HR-QoL at baseline and at the 6-months follow-up.

Anticipated number of patients:
- Anticipated number of patients per centre: 60
- Anticipated number of patients in total: 2040

To see the project results please visit the following website:
http://www.eschqol.lmu.de/sys/cgi/results.html


Referenznummer:

R/FO3436


Informationsstand: 08.12.2006