Diseases costs and impact of the caring role on informal carers of children with neuromuscular disease

dc.contributor.authorRodríguez Bermejo, Alicia Aurora
dc.contributor.authorMartinez Gutierrez, Oscar
dc.contributor.authorAmayra Caro, Imanol
dc.contributor.authorLópez Paz, Juan Francisco
dc.contributor.authorAl-Rashaida, Mohammad Ali Hussein
dc.contributor.authorLázaro Pérez, Esther
dc.contributor.authorCaballero, Patricia
dc.contributor.authorPérez Álvarez, Manuel
dc.contributor.authorBerrocoso Cascallana, Sarah
dc.contributor.authorGarcía Martín, Maitane
dc.contributor.authorLuna Ovalle, Paula
dc.contributor.authorPérez Núñez, Paula
dc.contributor.authorPassi, Nicole
dc.date.accessioned2025-09-02T10:10:46Z
dc.date.available2025-09-02T10:10:46Z
dc.date.issued2021-03-15
dc.date.updated2025-09-02T10:10:46Z
dc.description.abstractThis study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis.en
dc.description.sponsorshipThis work was funded by a PTC Therapeutics.en
dc.identifier.citationRodríguez, A. A., Martínez, Ó., Amayra, I., López-Paz, J. F., Al-Rashaida, M., Lázaro, E., Caballero, P., Pérez, M., Berrocoso, S., García, M., Luna, P. M., Pérez-Núñez, P., & Passi, N. (2021). Diseases costs and impact of the caring role on informal carers of children with neuromuscular disease. International Journal of Environmental Research and Public Health, 18(6), 1-16. https://doi.org/10.3390/IJERPH18062991
dc.identifier.doi10.3390/IJERPH18062991
dc.identifier.eissn1660-4601
dc.identifier.issn1661-7827
dc.identifier.urihttps://hdl.handle.net/20.500.14454/3439
dc.language.isoeng
dc.publisherMDPI AG
dc.subject.otherCarers
dc.subject.otherInformal costs
dc.subject.otherNeuromuscular disease
dc.subject.otherPsychological health
dc.subject.otherQuality of life
dc.titleDiseases costs and impact of the caring role on informal carers of children with neuromuscular diseaseen
dc.typejournal article
dcterms.accessRightsopen access
oaire.citation.endPage16
oaire.citation.issue6
oaire.citation.startPage1
oaire.citation.titleInternational Journal of Environmental Research and Public Health
oaire.citation.volume18
oaire.licenseConditionhttps://creativecommons.org/licenses/by/4.0/
oaire.versionVoR
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