Oliva Esther Natalie, Efficace Fabio, Valvano Maria Rosa, Arcuri Paola, Battistini Roberta, Buzzatti Elisa, Clissa Cristina, Danesin Cristina, Salemme Alessia, Sparano Francesco, Ramundo Francesco, Consoli Ugo, Chiurazzi Federico
Hematology Unit, Grande Ospedale Metropolitano Bianchi Melacrino Morelli, Reggio di Calabria, Italy.
Data Center and Health Outcomes Research Unit, Italian Group for Adult Haematologic Diseases (GIMEMA), Rome, Italy.
J Public Health Res. 2025 Aug 12;14(3):22799036251361377. doi: 10.1177/22799036251361377. eCollection 2025 Jul.
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).
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.
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.
Results highlight knowledge gaps and emphasize how clinical experience and exposure support effective PRO implementation in ITP.
患者报告结局（PROs）在血液学中日益受到认可，但临床医生的认知仍然有限。在自身免疫性血小板减少症（ITP）这一自身免疫性疾病中，疲劳等症状会影响生活质量（QoL）。
这项意大利的调查评估了意大利ITP NET网络内血液科医生对PROs的了解情况。在2023年4月4日至20日期间，邀请了来自49个中心的63名血液科医生完成一份关于人口统计学、生活质量理解以及对临床应用态度的63项在线问卷。
39人做出回应，他们上一年治疗的ITP患者中位数为50名。51%的医生在研究中使用了PROs，56%的医生在临床中应用了PROs。在有超过17年经验的血液科医生（72%）和有大量ITP诊疗经历的医生（64%）中发现了对PROs有更多的了解（p = 0.033和p = 0.037）。更大的中心报告更多参与试验情况（p = 0.035）以及更经常使用生活质量工具。
结果凸显了知识差距，并强调了临床经验和诊疗经历如何支持在ITP中有效实施PROs。
