{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T05:57:46Z","timestamp":1790747866516,"version":"4.1.0"},"reference-count":30,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,8,15]],"date-time":"2026-08-15T00:00:00Z","timestamp":1786752000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,8,15]],"date-time":"2026-08-15T00:00:00Z","timestamp":1786752000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Haemophilia is a rare congenital bleeding disorder that presents significant physical and psychological challenges, especially for young people, with limited real\u2010world evidence about their experiences in the UK.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>This study sought to understand the perspectives and challenges of young people living with haemophilia in the UK by analysing social media conversations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A retrospective qualitative study using social media listening was conducted, analysing publicly accessible UK\u2010based posts from September 2021\u2013September 2024. Data collection and thematic analysis focused on posts from people with haemophilia and their caregivers, with particular attention to the 13\u201325 age groups.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Out of 47,239 relevant posts identified, 839 were selected for in\u2010depth qualitative analysis. An artificial intelligence\u2010powered natural language processor, CoLoop, was used to identify five main themes: \u2018care and management\u2019 (83.54% of posts in the 13\u201325 cohort), \u2018living with haemophilia\u2019 (61.59%), \u2018social aspects of haemophilia\u2019 (31.10%), \u2018advancements and future outlook\u2019 (11.59%), and \u2018genetic considerations and family planning\u2019 (7.93%). Overall, the results demonstrated that young people with haemophilia in the UK seek greater independence, emotional resilience, and tailored support, highlighting the value of patient\u2010centred care, digital engagement, and policy reforms to address both clinical and psychosocial needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study underscores the importance of supporting healthcare professionals in deepening their understanding of their patients\u2019 lived experiences of haemophilia to provide comprehensive care. Social media listening offers a novel, measurable approach for identifying the challenges and unmet needs faced by patients with haemophilia.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70367","type":"journal-article","created":{"date-parts":[[2026,8,16]],"date-time":"2026-08-16T03:20:59Z","timestamp":1786850459000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Understanding the Experiences of Young People Living With Haemophilia\u2014A UK Social Media Study"],"prefix":"10.1111","author":[{"given":"Emma","family":"Gayton","sequence":"first","affiliation":[{"name":"Pfizer Ltd  Tadworth Surrey UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ranjit","family":"Nagra","sequence":"additional","affiliation":[{"name":"Pfizer Ltd  Tadworth Surrey UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bekki","family":"Millward","sequence":"additional","affiliation":[{"name":"Pfizer Ltd  Tadworth Surrey UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin","family":"Plummer","sequence":"additional","affiliation":[{"name":"Pfizer Ltd  Tadworth Surrey UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Galimam","sequence":"additional","affiliation":[{"name":"Lumanity  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alex","family":"Dowsett","sequence":"additional","affiliation":[{"name":"Elite Sportsperson and patient  UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nikki","family":"Curry","sequence":"additional","affiliation":[{"name":"Oxford Haemophilia &amp; Thrombosis Centre  Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,15]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-024-11850-y"},{"key":"e_1_2_11_3_1","volume-title":"UKHCDO Annual Report 2024 & Bleeding Disorder Statistics for the Financial Year 2023\/2024","author":"United Kingdom Haemophilia Centres Doctors\u2019 Organisation, National Haemophilia Database","year":"2024"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2025.117937"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.3390\/jcm13175121"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14510"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2025.117937"},{"key":"e_1_2_11_8_1","volume-title":"Social Media Seen as Mostly Good for Democracy Across Many Nations, but U.S. is a Major Outlier","author":"Gubbala S.","year":"2022"},{"key":"e_1_2_11_9_1","unstructured":"TalkWalker.TalkWalker.https:\/\/www.talkwalker.com."},{"key":"e_1_2_11_10_1","unstructured":"Infegy.Infegy Atlas.https:\/\/atlas.infegy.com."},{"key":"e_1_2_11_11_1","unstructured":"BHBIA.AI in Market Research Guidance & Resources. 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