{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T00:36:24Z","timestamp":1760142984439,"version":"build-2065373602"},"reference-count":17,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2024,1,19]],"date-time":"2024-01-19T00:00:00Z","timestamp":1705622400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Roche S.p.A."}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Applying the Delphi method, this study aims at characterizing the perceptions and needs of physicians, individuals with hemophilia, and their caregivers in relation to the management of routine visits during regular follow-ups. A single structured questionnaire, prepared by an advisory board, was administered to 139 participants, comprising hemophilia treaters, patients and caregivers, during the period from May to June 2023. Agreement (defined following the Delphi method as developed by RAND Corporation) was reached on several topics. The Principal Component Analysis methods identified the four most relevant areas where consensus was reached among the interviewees, underscoring the necessity for in-depth discussions during routine visits: (1) medical aspects related to symptoms, life-limitations, pain, etc.; (2) non-medical related aspects (ambitions, lifestyle, network, etc.); (3) logistical-organizational aspects (home\u2013hospital distance, alternative modalities of communication); and (4) visit duration and telemedicine integration. The results of both the Delphi and Principal Component Analysis underline that the care of individuals with hemophilia extends beyond merely prescribing drugs or treatment regimens. Instead, it necessitates consideration of numerous variables from both therapeutic and non-therapeutic domains, all of which are deemed important for the holistic management of the individuals. As a result, these aspects are routinely discussed and addressed during visits.<\/jats:p>","DOI":"10.3390\/jcm13020568","type":"journal-article","created":{"date-parts":[[2024,1,19]],"date-time":"2024-01-19T03:33:41Z","timestamp":1705635221000},"page":"568","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Better Communication for Better Management of Persons with Hemophilia: Results from a Patients\u2019-Clinicians\u2019 Project to Address the New Therapeutic Landscape"],"prefix":"10.3390","volume":"13","author":[{"given":"Laura","family":"Banov","sequence":"first","affiliation":[{"name":"Thrombosis and Hemostasis Unit, IRCCS Istituto Giannina Gaslini, 16147 Genoa, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5849-7377","authenticated-orcid":false,"given":"Silvia","family":"Linari","sequence":"additional","affiliation":[{"name":"Center for Bleeding Disorders and Coagulation, Careggi University Hospital, 50134 Florence, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Luigi","family":"Ambroso","sequence":"additional","affiliation":[{"name":"FedEmo\u2014Federazione delle Associazioni Emofilici, 20151 Milan, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0567-0260","authenticated-orcid":false,"given":"Enrico","family":"Ferri Grazzi","sequence":"additional","affiliation":[{"name":"FedEmo\u2014Federazione delle Associazioni Emofilici, 20151 Milan, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samanta","family":"Gallo","sequence":"additional","affiliation":[{"name":"ABGEC\u2014Associazione Bambini e Giovani con Emofilia e Altre Coagulopatie, 35128 Padua, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5560-1979","authenticated-orcid":false,"given":"Patrizio","family":"Pasqualetti","sequence":"additional","affiliation":[{"name":"Section of Medical Statistics, Department of Public Health and Infectious Disease, Sapienza Rome University, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7113-4028","authenticated-orcid":false,"given":"Maria Elisa","family":"Mancuso","sequence":"additional","affiliation":[{"name":"Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital, 20089 Rozzano, Italy"},{"name":"Faculty of Medicine, Humanitas University, 20072 Pieve Emanuele, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2024,1,19]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1111\/hae.14046","article-title":"WFH Guidelines for the Management of Hemophilia panelists and co-authors. 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