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
Article
Dans Anglais
| LILACS
| ID: biblio-1090852
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.
Texte intégral:
Disponible
Indice:
LILAS (Amériques)
Sujet Principal:
Aidants
/
Mucopolysaccharidose de type IV
/
Fardeau des soignants
Type d'étude:
Étude observationnelle
/
Étude de prévalence
/
Recherche qualitative
/
Facteurs de risque
Limites du sujet:
Adolescent
/
Adulte
/
Adulte très âgé
/
Femelle
/
Humains
/
Mâle
langue:
Anglais
Texte intégral:
J. inborn errors metab. screen
Thème du journal:
Medicina Cl¡nica
/
Patologia
Année:
2014
Type:
Article
Pays d'affiliation:
Allemagne
/
Turquie
/
États-Unis d'Amérique
/
Royaume-Uni
Institution/Pays d'affiliation:
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
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