Development and psychometric validation of the PERQOLATEUR questionnaire: an individualized self-report measure of the impact of chronic illness and treatment in clinical practice

BACKGROUND: Quality of life is a key construct in healthcare, particularly in the concept of health-related quality of life (HRQoL). Existing questionnaires are widely used in research but remain underused in clinical practice, partly due to their length and lack of personalization. No self-administered HRQoL instrument currently combines rapid completion with results that are immediately interpretable by clinicians. This study aimed to develop and validate a concise, self-administered, French-language personalized HRQoL questionnaire. METHODS: A multidisciplinary working group, including patients, designed and validated the PerQolateur questionnaire. The instrument comprises five sections: participants select five personally relevant themes from a predefined list of 12 and rate each for importance, well-being, and the impact of both their chronic condition and its treatments. Three scores were generated: Well-being, Health Problem Impact, and Treatment Impact. Psychometric evaluation included face, structural (confirmatory factor analysis), and convergent validity (correlations with SF-36 scores), as well as reliability (Cronbach's α and McDonald's ω). RESULTS: A total of 535 participants (73% women; 27% with chronic illness; aged 18-90 years) completed the study. Most (81%) fully understood the questionnaire, and 96% completed it in under five minutes. The Well-being and Health Problem Impact scores showed satisfactory model fit and reliability (α/ω = 0.66-0.80), while the Treatment Impact score performed less well. The first two scores correlated moderately (r > 0.40) with relevant SF-36 dimensions. CONCLUSION: The PerQolateur is the first validated, personalized HRQoL tool in French, offering brevity, usability, and clinical relevance for patient-centered care.