Clinician's knowledge and awareness of patient-reported outcomes in immune thrombocytopenia: Results of a national survey (ITP NET, GIMEMA Working Group Anemia and Thrombocytopenia)

临床医生对免疫性血小板减少症患者报告结局的了解和认识:一项全国性调查的结果(ITP NET,GIMEMA 贫血和血小板减少症工作组)

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Abstract

BACKGROUND: Patient-reported outcomes (PROs) are increasingly recognized in hematology, yet clinician awareness remains limited. In immune thrombocytopenia (ITP), an autoimmune disease, symptoms like fatigue impact quality of life (QoL). DESIGN AND METHODS: This Italian survey evaluated hematologists' knowledge of PROs within the Italian ITP NET network. Between April 4-20, 2023, 63 hematologists from 49 centers were invited to complete a 63-item online questionnaire on demographics, QoL understanding, and attitudes toward clinical use. RESULTS: Thirty-nine responded, treating a median of 50 ITP patients in the prior year. PROs were used in research by 51% and applied clinically by 56%. Greater PRO knowledge was found among hematologists with over 17 years' experience (72%) and extensive ITP exposure (64%) (p=0.033 and p=0.037). Larger centers reported more trial involvement (p=0.035) and regular QoL tool use. CONCLUSION: Results highlight knowledge gaps and emphasize how clinical experience and exposure support effective PRO implementation in ITP.

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