Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease.

摘要: This study aims to evaluate the costs of informal care for children with neuromuscular disease and how physical psychological health is associated socio-demographic variables. A cross sectional design was used a convenience sample 110 carers that participated in this study. Participants were recruited from Spanish hospitals rare diseases organizations. Economic sociodemographic aspects assessed using economic questionnaire questionnaire. Physical evaluated CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale Satisfaction Life Scale. Carers spent large percentage their annual income therapy, speech therapy. Informal differed according degree dependency child. These higher those caregivers whose child under presented low functional independence. The loss work productivity related marital status, use professional services child’s dependency. Finally, who female, single or separated without job showed worse health. results highlighted have face number high because non-existence social protection due diagnosis.