A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions.

Weaver, Meaghann S; Hanna, Rewais; Hetzel, Scott; Patterson, Karen; Yuroff, Alice; Sund, Sarah; Schultz, Meredith; Schroth, Mary; Halanski, Matthew A

Weaver, Meaghann S; Hanna, Rewais; Hetzel, Scott; Patterson, Karen; Yuroff, Alice; Sund, Sarah; Schultz, Meredith; Schroth, Mary; Halanski, Matthew A.

Afiliação

Weaver MS; Children's Hospital of Omaha, University of Nebraska Medical Center, Omaha, NE, USA.
Hanna R; School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA.
Hetzel S; School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA.
Patterson K; School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA.
Yuroff A; School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA.
Sund S; School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA.
Schultz M; AveXis, Inc, Bannockburn, IL, USA.
Schroth M; Cure SMA, Chicago, IL, USA.
Halanski MA; Children's Hospital of Omaha, University of Nebraska Medical Center, Omaha, NE, USA.

J Child Neurol ; 35(5): 322-330, 2020 04.

Article em En | MEDLINE | ID: mdl-32009500

Assuntos

Atrofia Muscular Espinal/psicologia; Qualidade de Vida/psicologia; Adolescente; Criança; Pré-Escolar; Estudos Cross-Over; Feminino; Humanos; Lactente; Masculino; Pais; Estudos Prospectivos; Autorrelato; Adulto Jovem

Palavras-chave

child neurology; family impact; patient-reported outcomes; pediatric palliative; quality of life; spinal muscular atrophy

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Texto completo: 1 Bases de dados: MEDLINE Assunto principal: Qualidade de Vida / Atrofia Muscular Espinal Tipo de estudo: Clinical_trials / Observational_studies / Qualitative_research Limite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male Idioma: En Revista: J Child Neurol Assunto da revista: NEUROLOGIA / PEDIATRIA Ano de publicação: 2020 Tipo de documento: Article País de afiliação: Estados Unidos

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