QUALIFY – Development of disease-specific quality of life questionnaires for patients of different age groups and caregivers
To assess the quality of life, a range of generic, validated questionnaires is available. However, to more precisely measure the quality of life of individuals affected by cystinosis and their caregivers, we are developing new age-specific and disease-specific assessment instruments in collaboration with psychologists at the University Medical Center Hamburg-Eppendorf.
To this end, a set of categories potentially influencing the quality of life was first identified and then prioritized together with affected individuals from different cultural backgrounds. The questionnaires developed on this basis were subsequently validated in multiple languages. A publication resulting from this project is currently in preparation.
