Authors: Gaël Brulé, Maria Caiata Zufferey & Agnès Dumas
Journal: International Society for Quality-of-Life Studies • 2024
Overview
This working paper evaluates 11 scales commonly used to measure health-related quality of life in people living with rare diseases.
Key findings
Existing questionnaires are overly focused on disease-specific and outcome-based measures, while often overlooking broader aspects of well-being and patients’ overall quality of life. They also show limited flexibility in addressing the diversity of rare diseases, and patients are not always sufficiently involved in the development of these questionnaires.
These findings support incorporating more generic well-being measures, combining them with disease-specific questions, and involving patients in questionnaire development to provide a more holistic assessment of quality of life.