The Burden Endured by Caregivers of Patients With Morquio A Syndrome: Results From an International Patient-Reported Outcomes Survey
J. inborn errors metab. screen
; 2: e140003, 2014. tab, graf
Artigo
em Inglês
| LILACS
| ID: biblio-1090852
Biblioteca responsável:
BR1.1
ABSTRACT
Abstract This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire) requiring caregiver assistance, and how the patient's age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers' relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.
Texto completo:
Disponível
Coleções:
Bases de dados internacionais
Base de dados:
LILACS
Assunto principal:
Cuidadores
/
Mucopolissacaridose IV
/
Fardo do Cuidador
Tipo de estudo:
Estudo observacional
/
Estudo de prevalência
/
Pesquisa qualitativa
/
Fatores de risco
Aspecto:
Preferência do paciente
Limite:
Adolescente
/
Adulto
/
Idoso
/
Feminino
/
Humanos
/
Masculino
Idioma:
Inglês
Revista:
J. inborn errors metab. screen
Assunto da revista:
Medicina Cl¡nica
/
Patologia
Ano de publicação:
2014
Tipo de documento:
Artigo
País de afiliação:
Alemanha
/
Turquia
/
Estados Unidos
/
Reino Unido
Instituição/País de afiliação:
BioMarin Europe Ltd/GB
/
BioMarin Pharmaceuticals Inc/US
/
Ege University/TR
/
Johannes Gutenberg-University/DE
/
Salford Royal NHS Foundation Trust/GB
/
Society for Mucopolysaccharide Diseases/GB