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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.

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