Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge

Detalhes bibliográficos
Autor(a) principal: Leite, Ângela
Data de Publicação: 2017
Outros Autores: Leite, Fernanda, Dinis, Maria Alzira Pimenta
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10284/7903
Resumo: http://sherpa.ac.uk/romeo/issn/1662-4246/
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spelling Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective KnowledgeAdaptation, PsychologicalAdolescentAdultAgedAmyloid Neuropathies, FamilialCase-Control StudiesFamily HealthFemaleGenetic CounselingHumansLate Onset DisordersMachado-Joseph DiseaseMaleMetaphorMiddle AgedRisk FactorsStress, PsychologicalSurveys and QuestionnairesYoung AdultHealth Knowledge, Attitudes, Practicehttp://sherpa.ac.uk/romeo/issn/1662-4246/BACKGROUND/AIMS: This study addresses the objective knowledge about the disease of subjects at risk for 3 genetic late-onset neurological diseases (LOND): familial amyloid polyneuropathy (FAP) TTR V30M, Huntington disease (HD), and Machado-Joseph disease (MJD). METHODS: Subjects at risk for FAP, HD, and MJD submitted to genetic counseling to know their status (carrier or non-carrier) and subjects at risk for hereditary hemochromatosis (HH), the control group, completed a sociodemographic questionnaire and answered the open-ended question: "What do you know about this disease?." RESULTS: From 10 categories of answers, references to the disease, quantitative answers, references to the family, and metaphors stood out. References to the disease, references to the family, and metaphors were mentioned more often by subjects at risk for LOND than by subjects at risk for HH (control group). CONCLUSION: The disease itself and its meaning as well as sick relatives play a key role in the objective knowledge about LOND. Thus, genetic counseling protocols of subjects at risk for LOND should include questions concerning family knowledge and disease experience.Karger PublishersRepositório Institucional da Universidade Fernando PessoaLeite, ÂngelaLeite, FernandaDinis, Maria Alzira Pimenta2019-09-16T08:40:12Z2017-01-01T00:00:00Z2017-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10284/7903engAPA: Leite, Â., Leite, F., & Dinis, M. A. P. (2017). Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge. Public Health Genomics, 20(3), 158-165. doi:10.1159/0004792921662-806310.1159/000479292metadata only accessinfo:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2022-09-06T02:07:17Zoai:bdigital.ufp.pt:10284/7903Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T15:44:49.207545Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
title Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
spellingShingle Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
Leite, Ângela
Adaptation, Psychological
Adolescent
Adult
Aged
Amyloid Neuropathies, Familial
Case-Control Studies
Family Health
Female
Genetic Counseling
Humans
Late Onset Disorders
Machado-Joseph Disease
Male
Metaphor
Middle Aged
Risk Factors
Stress, Psychological
Surveys and Questionnaires
Young Adult
Health Knowledge, Attitudes, Practice
title_short Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
title_full Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
title_fullStr Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
title_full_unstemmed Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
title_sort Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge
author Leite, Ângela
author_facet Leite, Ângela
Leite, Fernanda
Dinis, Maria Alzira Pimenta
author_role author
author2 Leite, Fernanda
Dinis, Maria Alzira Pimenta
author2_role author
author
dc.contributor.none.fl_str_mv Repositório Institucional da Universidade Fernando Pessoa
dc.contributor.author.fl_str_mv Leite, Ângela
Leite, Fernanda
Dinis, Maria Alzira Pimenta
dc.subject.por.fl_str_mv Adaptation, Psychological
Adolescent
Adult
Aged
Amyloid Neuropathies, Familial
Case-Control Studies
Family Health
Female
Genetic Counseling
Humans
Late Onset Disorders
Machado-Joseph Disease
Male
Metaphor
Middle Aged
Risk Factors
Stress, Psychological
Surveys and Questionnaires
Young Adult
Health Knowledge, Attitudes, Practice
topic Adaptation, Psychological
Adolescent
Adult
Aged
Amyloid Neuropathies, Familial
Case-Control Studies
Family Health
Female
Genetic Counseling
Humans
Late Onset Disorders
Machado-Joseph Disease
Male
Metaphor
Middle Aged
Risk Factors
Stress, Psychological
Surveys and Questionnaires
Young Adult
Health Knowledge, Attitudes, Practice
description http://sherpa.ac.uk/romeo/issn/1662-4246/
publishDate 2017
dc.date.none.fl_str_mv 2017-01-01T00:00:00Z
2017-01-01T00:00:00Z
2019-09-16T08:40:12Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10284/7903
url http://hdl.handle.net/10284/7903
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv APA: Leite, Â., Leite, F., & Dinis, M. A. P. (2017). Subjects at Risk for Genetic Late-Onset Neurological Diseases: Objective Knowledge. Public Health Genomics, 20(3), 158-165. doi:10.1159/000479292
1662-8063
10.1159/000479292
dc.rights.driver.fl_str_mv metadata only access
info:eu-repo/semantics/openAccess
rights_invalid_str_mv metadata only access
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Karger Publishers
publisher.none.fl_str_mv Karger Publishers
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
repository.mail.fl_str_mv
_version_ 1799130313793732608

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