Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.
J Autism Dev Disord
; 45(10): 3262-75, 2015 Oct.
Article
en En
| MEDLINE
| ID: mdl-26066358
ABSTRACT
Clinical guidelines recommend chromosomal microarray analysis (CMA) for all children with autism spectrum disorders (ASDs). We explored the test's perceived usefulness among parents of children with ASD who had undergone CMA, and received a result categorized as pathogenic, variant of uncertain significance, or negative. Fifty-seven parents participated in a semi-structured telephone interview, and 50 also completed a survey. Most parents reported that CMA was helpful for their child and family. Major themes regarding perceived usefulness were medical care, educational and behavioral interventions, causal explanation, information for family members, and advancing knowledge. Limits to utility, uncertainties and negative outcomes were also identified. Our findings highlight the importance of considering both health and non-health related utility in genomic testing.
Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Padres
/
Aceptación de la Atención de Salud
/
Pruebas Genéticas
/
Trastorno del Espectro Autista
Tipo de estudio:
Diagnostic_studies
/
Guideline
/
Prognostic_studies
/
Qualitative_research
Límite:
Child
/
Child, preschool
/
Female
/
Humans
/
Male
Idioma:
En
Revista:
J Autism Dev Disord
Año:
2015
Tipo del documento:
Article
País de afiliación:
Estados Unidos