6533b837fe1ef96bd12a32d4
RESEARCH PRODUCT
The Burden Endured by Caregivers of Patients With Morquio A Syndrome: Results From an International Patient-Reported Outcomes Survey
Sema Kalkan UçarMohit JainChristine LaveryChristian J. HendrikszLisa BellChristina LampeMahmut ÇOkersubject
medicine.medical_specialtycaregiversbusiness.industryEndocrinology Diabetes and MetabolismeducationInternational surveyMorquio A syndromewheelchairsdisease burdenQuality of life (healthcare)quality of lifePediatrics Perinatology and Child HealthMucopolysaccharidosis IVMedicinebusinessPsychiatryPersonal interviewMorquio A syndromeGenetics (clinical)Disease burdenmucopolysaccharidosis IVdescription
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.
| year | journal | country | edition | language |
|---|---|---|---|---|
| 2019-07-15 |