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

Coordinator

Participants (7)