Haemophilia Experiences, Results and Opportunities (HERO) Study: Influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia

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dc.contributorSistema FMUSP-HC: Faculdade de Medicina da Universidade de São Paulo (FMUSP) e Hospital das Clínicas da FMUSP
dc.contributor.authorCASSIS, F. R. M. Y.
dc.contributor.authorBUZZI, A.
dc.contributor.authorFORSYTH, A.
dc.contributor.authorGREGORY, M.
dc.contributor.authorNUGENT, D.
dc.contributor.authorGARRIDO, C.
dc.contributor.authorPILGAARD, T.
dc.contributor.authorCOOPER, D. L.
dc.contributor.authorIORIO, A.
dc.date.accessioned2014-09-30T14:55:56Z
dc.date.available2014-09-30T14:55:56Z
dc.date.issued2014
dc.description.abstractEvidence delineating the effects of haemophilia on interpersonal relationships is sparse and largely outdated, failing to reflect the impact of current treatment strategies. HERO (Haemophilia Experiences, Results and Opportunities) was commenced to garner a more comprehensive understanding of psychosocial issues facing persons with haemophilia (PWH). This article describes the findings of the quantitative HERO survey relating to the influence of haemophilia on interpersonal relationships of adult PWH, and parents/caregivers of children with haemophilia. Separate questionnaires were completed by adult PWH and parents of minor children from 10 countries, including satisfaction with support from partners, family, friends and other social contacts; disclosure of haemophilia and carrier status and family dynamics. A total of 675 PWH and 561 parents completed the survey. Over half of PWH (57%) and parents (84%) were married. Most PWH were satisfied with support from partners (94%), family (90%) and friends (85%), with lower percentages reported among those with inhibitors. Most parents were likewise satisfied with support from partners (88%) and family (83%). Whereas PWH were reticent to disclose their diagnosis beyond family and friends, parents were more likely to share their son's diagnosis, and most were satisfied with the support from their son's peers (74%), teachers (83%) and other adults in supervisory roles (85%). PWH and parents surveyed were satisfied overall with the support they received from partners, family, friends and social contacts. Relationships are affected by haemophilia in various ways, and particularly affected in terms of disease burden, age and social life.
dc.description.indexMEDLINE
dc.description.sponsorshipNovo Nordisk Inc.
dc.description.sponsorshipNovo Nordisk A/S
dc.identifier.citationHAEMOPHILIA, v.20, n.4, p.e287-e295, 2014
dc.identifier.doi10.1111/hae.12454
dc.identifier.eissn1365-2516
dc.identifier.issn1351-8216
dc.identifier.urihttps://observatorio.fm.usp.br/handle/OPI/7805
dc.language.isoeng
dc.publisherWILEY-BLACKWELL
dc.relation.ispartofHaemophilia
dc.rightsrestrictedAccess
dc.rights.holderCopyright WILEY-BLACKWELL
dc.subjectcaregiver
dc.subjectcommunication
dc.subjecthaemophilia
dc.subjectpsychosocial
dc.subjectrelationships
dc.subjectsupport
dc.subject.otherrheumatoid-arthritis
dc.subject.othermultiple-sclerosis
dc.subject.otherimpact
dc.subject.otherperspectives
dc.subject.otherchallenges
dc.subject.otherfamily
dc.subject.otherneeds
dc.subject.wosHematology
dc.titleHaemophilia Experiences, Results and Opportunities (HERO) Study: Influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia
dc.typearticle
dc.type.categoryoriginal article
dc.type.versionpublishedVersion
dspace.entity.typePublication
hcfmusp.affiliation.countryVenezuela
hcfmusp.affiliation.countryItália
hcfmusp.affiliation.countryDinamarca
hcfmusp.affiliation.countryEstados Unidos
hcfmusp.affiliation.countryCanadá
hcfmusp.affiliation.countryInglaterra
hcfmusp.affiliation.countryisoit
hcfmusp.affiliation.countryisous
hcfmusp.affiliation.countryisogb
hcfmusp.affiliation.countryisove
hcfmusp.affiliation.countryisodk
hcfmusp.affiliation.countryisoca
hcfmusp.author.externalBUZZI, A.:Fdn Paracelso, Milan, Italy
hcfmusp.author.externalFORSYTH, A.:RUSH Hemophilia & Thrombophilia Ctr, Chicago, IL USA; Novo Nordisk Inc, Princeton, NJ USA
hcfmusp.author.externalGREGORY, M.:UK Haemophilia Soc, London, England
hcfmusp.author.externalNUGENT, D.:Childrens Hosp Orange Cty, Orange, CA 92668 USA; Ctr Inherited Blood Disorders, Orange, CA USA
hcfmusp.author.externalGARRIDO, C.:AVH, Caracas, Venezuela
hcfmusp.author.externalPILGAARD, T.:Novo Nordisk AS, DK-2880 Bagsvaerd, Denmark
hcfmusp.author.externalIORIO, A.:McMaster Univ, Hlth Informat Res Unit, Dept Clin Epidemiol & Biostat, Hamilton, ON, Canada
hcfmusp.citation.scopus42
hcfmusp.contributor.author-fmusphcFREDERICA ROSE MARIE YOUSSEF CASSIS
hcfmusp.description.beginpagee287
hcfmusp.description.endpagee295
hcfmusp.description.issue4
hcfmusp.description.volume20
hcfmusp.origemWOS
hcfmusp.origem.pubmed24800872
hcfmusp.origem.scopus2-s2.0-84904641126
hcfmusp.origem.wosWOS:000337976400007
hcfmusp.publisher.cityHOBOKEN
hcfmusp.publisher.countryUSA
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hcfmusp.scopus.lastupdate2024-05-10
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