Psychometric evaluation of a patient-reported outcomes instrument for congenital thrombotic thrombocytopenic purpura

Psychometric evaluation of a patient-reported outcomes instrument for congenital thrombotic thrombocytopenic purpura

Abstract Background Congenital thrombotic thrombocytopenic purpura (cTTP) is an ultra-rare, life-threatening hereditary disorder that causes patients to experience significant morbidity and decreased health-related quality of life (HRQoL). A cTTP disease-specific patient-reported outcome (PRO) instr...

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Bibliographic Details
Main Authors: Abiola Oladapo, Diane Ito, Ana María Rodriguez, Stephanie Philpott, Robert Krupnick, Veleka Allen, Christopher Hibbard, Marie Scully, Bruce Ewenstein
Format: Article
Language:English
Published: SpringerOpen 2023-07-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Congenital thrombotic thrombocytopenic purpura
TTP
Rare diseases
Psychometrics
Patient-reported outcome measures
PRO
Online Access:https://doi.org/10.1186/s41687-023-00592-w

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