"Because it is a rare diseaseit needs to be brought to attention that there are things out of the norm": a qualitative study of patient and physician experiences of Wilson disease diagnosis and management in the US.

Bailey, Karen M; Sahota, Navdeep; To, Uyen; Hedera, Peter

"Because it is a rare diseaseit needs to be brought to attention that there are things out of the norm": a qualitative study of patient and physician experiences of Wilson disease diagnosis and management in the US.

Bailey, Karen M; Sahota, Navdeep; To, Uyen; Hedera, Peter.

Afiliação

Bailey KM; OPEN Health, London, UK.
Sahota N; OPEN Health, London, UK.
To U; Yale University, New Haven, Connecticut, United States.
Hedera P; University of Louisville, Louisville, KY, USA. peter.hedera@louisville.edu.

Orphanet J Rare Dis ; 18(1): 158, 2023 Jun 22.

Article em En | MEDLINE | ID: mdl-37349760

Assuntos

Degeneração Hepatolenticular; Médicos; Adolescente; Humanos; Degeneração Hepatolenticular/diagnóstico; Degeneração Hepatolenticular/terapia; Cobre/metabolismo; Doenças Raras/tratamento farmacológico; Zinco/uso terapêutico; Atenção

Palavras-chave

Interviews; Patient-reported; Qualitative; Treatment experience; Wilson disease

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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Médicos / Degeneração Hepatolenticular Tipo de estudo: Diagnostic_studies / Qualitative_research Limite: Adolescent / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article

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