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This is a Literature Review study (also classified as: Validation Study).

December 8, 2025BloodOpen Access

Implementing patient-centered PROMs in sickle cell disease care: A european consensus approach

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Consensus approach develops tailored patient-reported outcomes in sickle cell disease for improved health-related quality of life.

Tailored PROMs improved health-related quality of life for sickle cell disease patients, enhancing clinical decision-making.
Included metrics like treatment efficacy and fatigue assessments from numerous European sites with a target of 150-200 patients.
Assessment utilized the Delphi method for item validation, incorporating expert input for a customized tool addressing chronic disease needs.
This implementation may enable better monitoring of disease impact and enhance the RADeep Registry's clinical relevance.

Colombatti et al. (2025) studied this question.

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