Please use this identifier to cite or link to this item: http://hdl.handle.net/1822/57927

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dc.contributor.authorPinto, Patrícia Jesus Ribeiropor
dc.contributor.authorParedes, Ana Cristina Marquespor
dc.contributor.authorPedras, Susanapor
dc.contributor.authorCosta, Patrício Soarespor
dc.contributor.authorCrato, Miguelpor
dc.contributor.authorFernandes, Susanapor
dc.contributor.authorLopes, Manuelapor
dc.contributor.authorCarvalho, Manuelapor
dc.contributor.authorAlmeida, Armandopor
dc.date.accessioned2019-01-08T15:46:42Z-
dc.date.available2019-01-08T15:46:42Z-
dc.date.issued2018-
dc.identifier.citationPinto, P. R., Paredes, A. C., Pedras, S., Costa, P., et. al.(2018). Sociodemographic, Clinical, and Psychosocial Characteristics of People with Hemophilia in Portugal: Findings from the First National Survey. TH Open, 2(01), e54-e67por
dc.identifier.issn2512-9465-
dc.identifier.urihttp://hdl.handle.net/1822/57927-
dc.description.abstractHemophilia is a rare genetic bleeding disorder associated with pain, impaired functionality, and decreased quality of life (QoL). Several studies have focused on patient-reported outcomes of people with hemophilia (PWH) worldwide, but no such data are available for Portugal. This survey aimed to describe sociodemographic, clinical, and psychosocial characteristics of PWH of all ages in Portugal. Questionnaires were answered by self-report or by parents of children with hemophilia (proxy version). Variables assessed were sociodemographic and clinical, physical activity patterns, pain, functionality (HAL/PedHAL), QoL (A36 Hemofilia-QoL/CHO-KLAT), anxiety and depression (PROMIS), and illness perceptions (IPQ-R). One-hundred and forty-six PWH answered the survey: 106 adults, 21 children/teenagers between 10 and 17 years, 11 children between 6 and 9 years, and 8 children between 1 and 5 years. Most participants had severe hemophilia (60.3%) and type A was most commonly reported (86.3%). Bleeding episodes, joint deterioration, and pain were very prevalent, with the ankles and knees being the most affected joints, as illustrated by HAL/PedHAL scores. The A36 Hemofilia-QoL assessment showed moderate QoL (96.45; 0–144 scale) and significant anxiety and depression symptoms were found in 36.7 and 27.2% of adults, respectively. CHO-KLAT global score (0–100 scale) was 75.63/76.32 (self-report/proxy). Concerning hemophilia-related illness beliefs, a perception of chronicity and symptoms unpredictability was particularly prominent among adults and children/teenagers. This survey provided a comprehensive characterization of Portuguese PWH, including the first report of psychosocial characteristics. The findings allow for a deeper understanding of life with hemophilia in Portugal and the identification of relevant health care and research needspor
dc.description.sponsorshipNovo Nordisk HERO Research Grant 2015. P.R.P. has a grant (SFRH/BPD/103529/2014) from the Portuguese Foundation of Science and Technologypor
dc.language.isoengpor
dc.publisherThieme Medical Publisherspor
dc.rightsopenAccesspor
dc.subjectHemophiliapor
dc.subjectPainpor
dc.subjectQuality of lifepor
dc.subjectFunctionalitypor
dc.subjectPsychological factorspor
dc.titleSociodemographic, clinical, and psychosocial characteristics of people with hemophilia in Portugal: findings from the first national surveypor
dc.typearticlepor
dc.peerreviewedyespor
dc.relation.publisherversionhttps://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0038-1624568por
oaire.citationStartPagee54por
oaire.citationEndPagee67por
oaire.citationIssue01por
oaire.citationVolume02por
dc.identifier.doi10.1055/s-0038-1624568por
dc.subject.fosCiências Médicas::Medicina Básicapor
dc.description.publicationversioninfo:eu-repo/semantics/publishedVersionpor
sdum.journalTH Openpor
Appears in Collections:ICVS - Artigos em Revistas Internacionais com Referee

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