{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T13:31:23Z","timestamp":1784640683085,"version":"3.55.0"},"reference-count":17,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,8,30]],"date-time":"2023-08-30T00:00:00Z","timestamp":1693353600000},"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":[[2023,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Treatment adherence is critical to minimize bleeding episodes in persons with haemophilia. Suboptimal adherence increases risk of adverse medical outcomes and negatively impacts quality of life. Assessment of treatment adherence is therefore an integral component of intervention to mitigate the adverse impacts of haemophilia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To develop and validate a multifactorial, patient (self or caregiver) report adherence measure for emicizumab treatment and report the first patient\u2010report data on adherence to specific components of emicizumab treatment (dosing, timing, injection, planning and bleeds).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>An IRB approved multi\u2010site prospective study enrolled 83 participants with factor VIII deficiency being treated with emicizumab. Participants completed the 25\u2010item VERITAS NexGen (self\u2010report from 50 adults age 18+ years; caregiver\u2010report from 33 parents of children aged 6\u00a0months to 17\u00a0years) as well as a global adherence rating (GAR) scale. Providers of participants also completed a GAR scale.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Most VERITAS\u2010NexGen subscales had good\u2010to\u2010excellent internal consistency reliability, test\u2010retest reliability, and validity. VERITASNexGen scores revealed globally strong patient\u2010reported adherence; however timing and bleed management were reported as greater challenges to adherence compared to dosing and injections. Adults struggled more with timing and planning of injections than caregivers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The VERITASNexGen is the first validated multifactorial patient\u2010report measure of adherence designed specifically for emicizumab treatment. Results suggest excellent adherence, with only 4%\u201313% of participants reporting suboptimal adherence to different components of the treatment regimen. Used in conjunction with other adherence measures, VERITAS\u2010NexGen meets a crucial need for monitoring and understanding patient adherence to emicizumab in clinical and research settings.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14851","type":"journal-article","created":{"date-parts":[[2023,8,30]],"date-time":"2023-08-30T16:36:04Z","timestamp":1693413364000},"page":"1299-1305","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Psychometrics and applications of a novel self\u2010report measure of emicizumab adherence: VERITASNexGen"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2328-2085","authenticated-orcid":false,"given":"Amanda","family":"Okolo","sequence":"first","affiliation":[{"name":"Indiana Haemophilia and Thrombosis Center  Indianapolis Indiana USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2821-7159","authenticated-orcid":false,"given":"Amy","family":"Shapiro","sequence":"additional","affiliation":[{"name":"Indiana Haemophilia and Thrombosis Center  Indianapolis Indiana USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Isaac","family":"Janson","sequence":"additional","affiliation":[{"name":"Indiana Haemophilia and Thrombosis Center  Indianapolis Indiana USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James","family":"Okungade","sequence":"additional","affiliation":[{"name":"Indiana Haemophilia and Thrombosis Center  Indianapolis Indiana USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chris","family":"Roberson","sequence":"additional","affiliation":[{"name":"Indiana Haemophilia and Thrombosis Center  Indianapolis Indiana USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"MacKenzie","family":"Nolte","sequence":"additional","affiliation":[{"name":"Cancer and Blood Diseases Institute Department of Hematology Cincinnati Children's Hospital Medical Center  Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0340-0045","authenticated-orcid":false,"given":"Lisa","family":"Littner","sequence":"additional","affiliation":[{"name":"Cancer and Blood Diseases Institute Department of Hematology Cincinnati Children's Hospital Medical Center  Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Kronenberger","sequence":"additional","affiliation":[{"name":"Department of Psychiatry Indiana University School of Medicine  Indianapolis Indiana USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,8,30]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12660"},{"key":"e_1_2_11_3_1","unstructured":"MASAC recommendation concerning prophylaxis. Document #241. National Haemophilia Foundation. Published February 2016. Accessed December 7 2022.https:\/\/www.hemophilia.org\/sites\/default\/files\/document\/files\/241prophylaxis.pdf"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02909.x"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S139851"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.18553\/jmcp.2021.21368"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/jha2.412"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2009.02129.x"},{"key":"e_1_2_11_9_1","unstructured":"MASAC Document 268\u2010Recommendation on the use and management of emicizumab\u2010kxwh (HEMLIBRA) for hemophilia A with and without inhibitors. National Hemophilia Foundation. Published April 27 2022. Accessed December 7 2022.https:\/\/www.hemophilia.org\/healthcare\u2010professionals\/guidelines\u2010on\u2010care\/masac\u2010documents\/masac\u2010document\u2010268\u2010recommendation\u2010on\u2010the\u2010use\u2010and\u2010management\u2010of\u2010emicizumab\u2010kxwh\u2010hemlibrar\u2010for\u2010hemophilia\u2010a\u2010with\u2010and\u2010without\u2010inhibitors"},{"key":"e_1_2_11_10_1","doi-asserted-by":"crossref","unstructured":"YoungG LiesnerR SidonioRJr et\u00a0al.Emicizumab prophylaxis provides flexible and effective bleed control in children with hemophilia A with inhibitors: results from the HAVEN 2 study.Presented at: ASH 60th Annual Meeting of the American Society of Hematology;2018; San Diego CA.","DOI":"10.1182\/blood-2018-99-118153"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14421"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/bcp.12194"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1080\/03007995.2018.1477747"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD000011.pub4"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2009.02094.x"},{"key":"e_1_2_11_17_1","unstructured":"IBM Corp. IBM SPSS Statistics for Windows Version 28.0. Armonk NY: IBM Corp. Released;2021."},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/27.1.5"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.14851","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,29]],"date-time":"2024-02-29T04:50:32Z","timestamp":1709182232000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.14851"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,8,30]]},"references-count":17,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2023,9]]}},"alternative-id":["10.1111\/hae.14851"],"URL":"https:\/\/doi.org\/10.1111\/hae.14851","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,8,30]]},"assertion":[{"value":"2023-03-29","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-08-21","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-08-30","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}