Duchenne muscular dystrophy--parental perceptions.
Clin Pediatr (Phila)
; 41(2): 105-9, 2002 Mar.
Article
en En
| MEDLINE
| ID: mdl-11931326
Quality of life and availability of services are important for boys with Duchenne muscular dystrophy (DMD) and their families. Families attending our neuromuscular clinic completed a questionnaire on parental perception regarding the importance of services, health issues, and quality of life issues both "now" and "in the future." Eighty-nine percent of the families (31/35) completed questionnaires. Services and health issues related to prolonging ambulation were most important, especially for the parents of younger boys. Mental health issues such as social isolation, anger, and depression were very important, particularly for the families of older boys and were anticipated to be more important in the future. Pediatricians should be aware of both the immediate needs of families to meet the physical and emotional challenges of DMD and the increasing requirement to address the social needs of these patients and their families as the boys become older.
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Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Padres
/
Rol del Médico
/
Calidad de Vida
/
Actitud Frente a la Salud
/
Servicios de Salud del Niño
/
Niños con Discapacidad
/
Evaluación de Necesidades
/
Distrofias Musculares
Tipo de estudio:
Prognostic_studies
/
Qualitative_research
Aspecto:
Determinantes_sociais_saude
/
Patient_preference
Límite:
Adolescent
/
Adult
/
Child
/
Child, preschool
/
Humans
/
Male
Idioma:
En
Revista:
Clin Pediatr (Phila)
Año:
2002
Tipo del documento:
Article
País de afiliación:
Canadá
Pais de publicación:
Estados Unidos