Burden of illness (BoI) data measures the impact of an illness on a patient and caregivers and is derived from patient-reported outcomes (PRO). New attention has been paid to BoI studies in recent years, especially in the context of health technology assessment (HTA) decision-making, wherein BoI data can inform economic models by factoring in real patient quality of life measures.
According to Marieke Schurer of Lumanity, “When you capture patient-reported outcomes using a generic or disease-specific instrument, it’s a simplification of real life, it doesn’t allow you to capture all the nuances and complexities that exist in real life. Given the importance of PRO instruments, they need to be rigorously tested before they can be validated. Such instruments are tested for construct validity, content validity, convergent validity, etc., to ensure a standardised and widely accepted instrument that can be used repeatedly and with confidence. For a BoI study, we can introduce flexibility, such that, while we have agreed questions to ask, we can explore topics that emerge from discussions with the patient, we are listening and learning from the patient to better inform what is important to them.”
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(Source: PharmaPhorum, November 24th, 2022)