title: Understanding the importance of using patient-reported outcome measures in patients with immune thrombocytopenia.
abstract: Incorporating patient-reported outcomes (PROs) when studying patients with immune thrombocytopenia (ITP) is essential since treatment decisions are complex and using platelet count only partly explains disease burden. Since most symptoms are only experienced subjectively and are seldom captured during clinician-based evaluations, using self-report is crucial for early symptom detection. However, capturing the patient's illness experience necessitates using well-developed and validated instruments. This article provides insight on the importance of using PROs in ITP, summarizes the methodological steps to develop PRO instruments, and discusses challenges related to integrating PROs into research and clinical practice.
authors.affiliation: Institute of Nursing Science, University Basel, and Department of Hematology, University Hospital Basel, Basel, Switzerland.
authors.forename: Monika
authors.initials: M
authors.lastname: Kirsch
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Klaassen
authors.forename: Sabina
authors.initials: S
authors.lastname: De Geest
authors.forename: Axel
authors.initials: A
authors.lastname: Matzdorff
authors.forename: Tatyana
authors.initials: T
authors.lastname: Ionova
authors.forename: Fabienne
authors.initials: F
authors.lastname: Dobbels
mesh_terms: D006801:Humans; D063868:Patient Outcome Assessment; D057240:Patient Preference; D017060:Patient Satisfaction; D011788:Quality of Life; D057566:Self Report / Q000592:standards*; D011795:Surveys and Questionnaires; D013921:Thrombocytopenia / Q000523:psychology* / Q000628:therapy*; D016896:Treatment Outcome