UK families with children with rare chromosome disorders: Changing experiences of diagnosis and counselling (2003-2013).

Szczepura, A; Wynn, S; Searle, B; Khan, A J; Palmer, T; Biggerstaff, D; Elliott, J; Hultén, M A

Szczepura, A; Wynn, S; Searle, B; Khan, A J; Palmer, T; Biggerstaff, D; Elliott, J; Hultén, M A.

Afiliação

Szczepura A; Enterprise and Innovation Group, Coventry University, Coventry, UK.
Wynn S; Unique, The Rare Chromosome Disorder Support Group, Surrey, Oxted, UK.
Searle B; Unique, The Rare Chromosome Disorder Support Group, Surrey, Oxted, UK.
Khan AJ; Centre for Innovative Research Across the Life Course, Coventry University, Coventry, CV1 5FB, UK.
Palmer T; Department of Mathematics & Statistics, Lancaster University, Lancaster, UK.
Biggerstaff D; Warwick Medical School, University of Warwick, Coventry, UK.
Elliott J; Centre for Innovative Research Across the Life Course, Coventry University, Coventry, CV1 5FB, UK.
Hultén MA; Department of Clinical Genetics, Karolinska University Hospital, Stockholm, Sweden.

Clin Genet ; 93(5): 972-981, 2018 05.

Article em En | MEDLINE | ID: mdl-29318577

Assuntos

Transtornos Cromossômicos/epidemiologia; Aconselhamento Genético/psicologia; Doenças Raras/epidemiologia; Transtornos Cromossômicos/genética; Transtornos Cromossômicos/patologia; Transtornos Cromossômicos/psicologia; Família/psicologia; Feminino; Humanos; Masculino; Doenças Raras/genética; Doenças Raras/patologia; Doenças Raras/psicologia; Inquéritos e Questionários; Reino Unido/epidemiologia

Palavras-chave

clinical genetics services; evidence-based clinical guidelines; families' experiences; national surveys; patient reported outcomes (PROs); rare chromosome disorders

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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Transtornos Cromossômicos / Doenças Raras / Aconselhamento Genético Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Aspecto: Patient_preference Limite: Female / Humans / Male País/Região como assunto: Europa Idioma: En Revista: Clin Genet Ano de publicação: 2018 Tipo de documento: Article

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