{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,6]],"date-time":"2026-04-06T01:21:33Z","timestamp":1775438493734,"version":"3.50.1"},"reference-count":51,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2019,2,27]],"date-time":"2019-02-27T00:00:00Z","timestamp":1551225600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"name":"Novo Nordisk HERO Research","award":["2015"],"award-info":[{"award-number":["2015"]}]},{"name":"Novo Nordisk HERO Research","award":["SFRH\/BPD\/103529\/2014"],"award-info":[{"award-number":["SFRH\/BPD\/103529\/2014"]}]},{"name":"Portuguese Foundation of Science and Technology"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,3,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Hemophilia is a rare disorder characterized by spontaneous bleeding, with pain being a critical aspect. However, a systematic assessment of hemophilia-related pain in Portugal has never been conducted.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>To understand the pain experience among Portuguese people with hemophilia (PWH) by describing its prevalence, characteristics, and impact and uncovering intervention needs in the realm of hemophilia-related pain care.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>A cross-sectional observational survey, with age-adapted versions of questions concerning pain, emotional distress, and quality of life, was answered by 104 adults, 21 children\/teenagers (10\u201317\u2009years), and 19 children (1\u20139 years).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Pain was reported by 82 (78.8%) adults, 16 (76.2%) children\/teenagers, and 13 (68.4%) children, with 65 (62.5%), 13 (61.9%), and eight (42.1%) of them reporting pain lasting more than three months, respectively. The mean number of pain locations (SD) was 5.23 (3.95) for adults, 4.13 (3.48) for children\/teenagers, and 3.15 (1.99) for children age 1\u20139 years, with lower limbs pain causing the greatest negative impact. More frequent pain-triggering factors were physical effort\/movements (61, 74.4%) for adults and hemarthrosis for younger groups (children\/teenagers: 14, 87.5%; children: 9, 69.2%). Bleeds yielded the highest mean pain intensity (adults: M [SD]\u2009=\u20095.67 [2.09]; children\/teenagers: M [SD]\u2009=\u20095.69 [2.15]). Adults with pain revealed more anxiety (odds ratio [OR]\u2009=\u20091.698, P\u2009=\u20090.003) and depression (OR\u2009=\u20091.961, P\u2009=\u20090.025) and lower quality of life (OR\u2009=\u20090.928, P\u2009=\u20090.001).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>The current findings highlight the high prevalence, duration, and frequency of pain at all ages, its potentially simultaneous acute and chronic nature, its likelihood to affect multiple locations concurrently, and its detrimental impact. Important insights concerning intervention needs are presented, ultimately contributing to the improvement of hemophilia-related pain management and patient care.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/pm\/pny309","type":"journal-article","created":{"date-parts":[[2018,12,19]],"date-time":"2018-12-19T20:13:37Z","timestamp":1545250417000},"page":"458-471","source":"Crossref","is-referenced-by-count":23,"title":["Pain Prevalence, Characteristics, and Impact Among People with Hemophilia: Findings from the First Portuguese Survey and Implications for Pain Management"],"prefix":"10.1093","volume":"21","author":[{"given":"Patr\u00edcia Ribeiro","family":"Pinto","sequence":"first","affiliation":[{"name":"Life and Health Sciences Research Institute (ICVS), School of Medicine, University of Minho, Braga, Portugal"},{"name":"ICVS\/3B\u2019s \u2013 PT Government Associate Laboratory, Braga\/Guimar\u00e3es, Portugal"}]},{"given":"Ana Cristina","family":"Paredes","sequence":"first","affiliation":[{"name":"Life and Health Sciences Research Institute (ICVS), School of Medicine, University of Minho, Braga, Portugal"},{"name":"ICVS\/3B\u2019s \u2013 PT Government Associate Laboratory, Braga\/Guimar\u00e3es, Portugal"}]},{"given":"Armando","family":"Almeida","sequence":"first","affiliation":[{"name":"Life and Health Sciences Research Institute (ICVS), School of Medicine, University of Minho, Braga, Portugal"},{"name":"ICVS\/3B\u2019s \u2013 PT Government Associate Laboratory, Braga\/Guimar\u00e3es, Portugal"}]}],"member":"286","published-online":{"date-parts":[[2019,2,27]]},"reference":[{"issue":"1","key":"2020030702232368100_pny309-B1","doi-asserted-by":"crossref","first-page":"e1","DOI":"10.1111\/j.1365-2516.2012.02909.x","article-title":"Guidelines for the management of hemophilia","volume":"19","author":"Srivastava","year":"2013","journal-title":"Haemophilia"},{"issue":"6","key":"2020030702232368100_pny309-B2","doi-asserted-by":"crossref","first-page":"777","DOI":"10.1111\/bjh.13365","article-title":"The current status of prophylactic replacement therapy in children and adults with haemophilia","volume":"169","author":"Ljung","year":"2015","journal-title":"Br J Haematol"},{"key":"2020030702232368100_pny309-B3","doi-asserted-by":"crossref","first-page":"207","DOI":"10.2147\/JBM.S50644","article-title":"Optimal management of hemophilic arthropathy and hematomas","volume":"5","author":"Lobet","year":"2014","journal-title":"J Blood Med"},{"issue":"3","key":"2020030702232368100_pny309-B4","doi-asserted-by":"crossref","first-page":"560","DOI":"10.1055\/s-0037-1615621","article-title":"Definitions in hemophilia. 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