Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs.

Rautmann, Laura; Witt, Stefanie; Theiding, Christoph; Odenwald, Birgit; Nennstiel-Ratzel, Uta; Dörr, Helmuth-Günther; Quitmann, Julia Hannah

Rautmann, Laura; Witt, Stefanie; Theiding, Christoph; Odenwald, Birgit; Nennstiel-Ratzel, Uta; Dörr, Helmuth-Günther; Quitmann, Julia Hannah.

Afiliação

Rautmann L; Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany.
Witt S; Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany.
Theiding C; Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany.
Odenwald B; Bavarian Screening Center, Bavarian State Office for Health and Food Safety, Veterinärstraße 2, 85764 Oberschleißheim, Germany.
Nennstiel-Ratzel U; Bavarian Screening Center, Bavarian State Office for Health and Food Safety, Veterinärstraße 2, 85764 Oberschleißheim, Germany.
Dörr HG; Department of Pediatric Endocrinology, University Children's Hospital Erlangen, Loschgestr. 15, 91054 Erlangen, Germany.
Quitmann JH; Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany.

Int J Environ Res Public Health ; 20(5)2023 03 03.

Article em En | MEDLINE | ID: mdl-36901502

Assuntos

Hiperplasia Suprarrenal Congênita; Recém-Nascido; Feminino; Humanos; Criança; Hiperplasia Suprarrenal Congênita/psicologia; Estudos Retrospectivos; Qualidade de Vida; Estudos Transversais; Triagem Neonatal; Adaptação Psicológica

Palavras-chave

21-hydroxylase deficiency; congenital adrenal hyperplasia; newborn screening; parental coping; parental needs; psychological stress; rare disease

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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Hiperplasia Suprarrenal Congênita Tipo de estudo: Diagnostic_studies / Observational_studies / Prevalence_studies / Risk_factors_studies / Screening_studies Aspecto: Patient_preference Limite: Child / Female / Humans / Newborn Idioma: En Revista: Int J Environ Res Public Health Ano de publicação: 2023 Tipo de documento: Article País de afiliação: Alemanha País de publicação: Suíça

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