Quality of life in children and adolescents with disabilities and their families - assessing patient views and patient needs for comprehensive care

Objective

The current study aims at developing and testing methods that can be used in European countries to assess the quality of life of children with disabilities and their families, focussing on the development of health condition specific assessments. This is deemed necessary to identify needs and evaluate interventions with regards to those needs on a national and a European level. The project will develop a modular assessment instrument for children/adolescents suffering from asthma, severe spinal cord affections and one of the following conditions: epilepsy, diabetes, arthritis and skin diseases. This instrument will be tested in 1.260 children and will be delaminated for implementation in clinical settings. It is expected that the availability of this tool will help patients to express their views and needs for care and will guide care givers in planning, improving and evaluating their care.

Programme(s)

• FP5-LIFE QUALITY - Specific Programme for research, technological development and demonstration on "Quality of life and management of living resources", 1998-2002

Topic(s)

• 1.1.1.-11. - Research relating to the persons with disabilities

Funding Scheme

CSC - Cost-sharing contracts

Coordinator

UNIVERSITY OF HAMBURG

Address

Martinistraße 52
20246 Hamburg
Germany

Participants (7)

ARISTOTLE UNIVERSITY OF THESSALONIKI

Greece

Address

Konstantinoypoleos 49 - Hippocratio Hospital
54642 Thessaloniki

LEIDEN UNIVERSITY

Netherlands

Address

72,Rapenburg 70
2311 EZ Leiden

LUND UNIVERSITY

Sweden

Address

Lasarettet
221 85 Lund

PUBLIC UNIVERSITY HOSPITAL SYSTEM OF MARSEILLE

France

Address

27, Bd Jean Moulin - Faculte De Medecine
13385 Marseille

UNIVERSITY OF EDINBURGH

United Kingdom

Address

Morningside Park Royal Edinburgh Hospital
EH10 5HF Edinburgh

UNIVERSITY OF LUEBECK

Germany

Address

Ratzeburger Allee 160
23538 Luebeck

UNIVERSITY OF VIENNA

Austria

Address

Wahringer Gurtel 18-20
1010 Wien