{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T05:10:43Z","timestamp":1787893843096,"version":"build-2784847793"},"reference-count":44,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2024,2,5]],"date-time":"2024-02-05T00:00:00Z","timestamp":1707091200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2024,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value\u2010based outcome indicators is needed to assess the quality of care and the impact of these medical innovations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>The Value\u2010Based Healthcare in Haemophilia project aimed to define a set of clinical outcome indicators (COIs) and patient\u2010reported outcome indicators (PROIs) to assess quality of care in haemophilia in high\u2010income countries with a value\u2010based approach to inform and guide the decision\u2010making process.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A Value\u2010based healthcare approach based on the available literature, current guidelines and the involvement of a multidisciplinary group of experts was applied to generate a set of indicators to assess the quality of care of haemophilia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A final list of three COIs and five PROIs was created and validated. The identified COIs focus on two domains: musculoskeletal health and function, and safety. The identified PROIs cover five domains: bleeding frequency, pain, mobility and physical activities, Health\u2010Related Quality of Life and satisfaction. Finally, two composite outcomes, one based on COIs, and one based on PROIs, were proposed as synthetic outcome indicators of quality of care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The presented standard set of health outcome indicators provides the basis for harmonised longitudinal and cross\u2010sectional monitoring and comparison. The implementation of this value\u2010based approach would enable a more robust assessment of quality of care in haemophilia, within a framework of continuous treatment improvements with potential added value for patients. Moreover, proposed COIs and PROIs should be reviewed and updated routinely.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.14943","type":"journal-article","created":{"date-parts":[[2024,2,7]],"date-time":"2024-02-07T04:00:15Z","timestamp":1707278415000},"page":"437-448","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["The value\u2010based healthcare approach to haemophilia: Development of outcome measures for the evaluation of care of people with haemophilia"],"prefix":"10.1111","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5241-4473","authenticated-orcid":false,"given":"Paolo Angelo","family":"Cortesi","sequence":"first","affiliation":[{"name":"Research Centre on Public Health (CESP) University of Milano\u2010Bicocca  Monza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9609-9556","authenticated-orcid":false,"given":"Carla","family":"Fornari","sequence":"additional","affiliation":[{"name":"Research Centre on Public Health (CESP) University of Milano\u2010Bicocca  Monza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5774-3740","authenticated-orcid":false,"given":"Sara","family":"Conti","sequence":"additional","affiliation":[{"name":"Research Centre on Public Health (CESP) University of Milano\u2010Bicocca  Monza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Berardino","family":"Pollio","sequence":"additional","affiliation":[{"name":"Regional Reference Centre for Inherited Bleeding and Thrombotic Disorders, Transfusion Medicine \u201cRegina Margherita\u201d Children Hospital  Turin Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elena","family":"Boccalandro","sequence":"additional","affiliation":[{"name":"Fondazione IRCCS Ca\u2019 Granda Ospedale Maggiore Policlinico Angelo Bianchi Bonomi Hemophilia and Thrombosis Center  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Buzzi","sequence":"additional","affiliation":[{"name":"Fondazione Paracelso  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0845-7940","authenticated-orcid":false,"given":"Christian","family":"Carulli","sequence":"additional","affiliation":[{"name":"Orthopaedic Clinic University of Florence  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3697-706X","authenticated-orcid":false,"given":"Antonio","family":"Coppola","sequence":"additional","affiliation":[{"name":"Regional Reference Centre for Inherited Bleeding Disorders University Hospital of Parma  Parma Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raimondo","family":"De Cristofaro","sequence":"additional","affiliation":[{"name":"Haemorrhagic and Thrombotic Disease Service Fondazione Policlinico Universitario \u201cA. Gemelli\u201d IRCCS  Rome Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matteo Nicola Dario","family":"Di Minno","sequence":"additional","affiliation":[{"name":"Department of Clinical Medicine and Surgery Regional Reference Center for Coagulation Disorders Federico II University  Naples Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerard","family":"Dolan","sequence":"additional","affiliation":[{"name":"Guys' and St Thomas' NHS Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Enrico","family":"Ferri Grazzi","sequence":"additional","affiliation":[{"name":"Federation of Haemophilia Associations (FedEmo)  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arianna","family":"Fornari","sequence":"additional","affiliation":[{"name":"Research Centre on Public Health (CESP) University of Milano\u2010Bicocca  Monza Italy"},{"name":"Neurology, Public Health and Disability Unit Fondazione IRCCS Istituto Neurologico Carlo Besta  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6465-7624","authenticated-orcid":false,"given":"Roberta","family":"Gualtierotti","sequence":"additional","affiliation":[{"name":"Fondazione IRCCS Ca\u2019 Granda Ospedale Maggiore Policlinico Angelo Bianchi Bonomi Hemophilia and Thrombosis Center  Milan Italy"},{"name":"Universit\u00e0 degli Studi di Milano Department of Pathophysiology and Transplantation  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cedric","family":"Hermans","sequence":"additional","affiliation":[{"name":"Haemostasis and Thrombosis Unit, Division of Haematology Cliniques Universitaires Saint\u2010Luc, Universit\u00e9 Catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3937-3499","authenticated-orcid":false,"given":"Victor","family":"Jim\u00e9nez\u2010Juste","sequence":"additional","affiliation":[{"name":"Thrombosis and Haemostasis Unit \u2010 IdiPAZ University Hospital La Paz  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1279-2557","authenticated-orcid":false,"given":"Gili","family":"Kenet","sequence":"additional","affiliation":[{"name":"National Hemophilia Center Thrombosis Unit and Amalia Biron Research Institute of Thrombosis and Hemostasis Sheba Medical Center Tel Hashomer, Israel; 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