Measuring quality of life in cerebral palsy children..

Objectives

To identify and describe available health-related quality of life (HRQL) markers in walking paediatric cerebral palsy (CP) patients.

Methods

A Medline literature review (1980-2007); content, application field, and metrologic properties of the scales were specified.

Results

Seventeen scales were identified and classified into three categories: scales developed for cerebral palsy patients or developed for neuromotor pathologies and used mostly in cerebral palsy patients; generic scales developed for the general population; generic scales developed for chronic, non-specific diseases.

Discussion and Conclusion

Documentation of metrologic properties in available HRQL scales is unequal. Information about “sensitivity to change” of the scales is necessary for their use in therapeutic outcome or cohort follow-up studies in CP patients. To include an analysis of the patient's opinion is important, thus most of the questionnaires are based on the experimenter's experience and synthesis of the literature. CP children's auto-evaluation of their quality of life using a questionnaire developed based on the patients’ and families’ opinions, in association with a participation questionnaire, seems to be the most informative method to include in outcome studies.