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The Burden of Spinal Muscular Atrophy on Informal Caregivers.

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  • معلومة اضافية
    • المصدر:
      Publisher: MDPI Country of Publication: Switzerland NLM ID: 101238455 Publication Model: Electronic Cited Medium: Internet ISSN: 1660-4601 (Electronic) Linking ISSN: 16604601 NLM ISO Abbreviation: Int J Environ Res Public Health Subsets: MEDLINE
    • بيانات النشر:
      Original Publication: Basel : MDPI, c2004-
    • الموضوع:
    • نبذة مختصرة :
      Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the time taken to care for patients suffering from SMA in European countries and the burden on their informal caregivers. We designed a cross-sectional study recording data from France, Germany, Spain and the United Kingdom. The primary caregivers completed a self-administered questionnaire that included questions about the time of care, The Zarit Burden Interview, type of SMA and socio-demographic characteristics. Multivariate analyses were used to study the associations between the type of SMA, time of care and burden supported by informal caregivers. The caregivers provided 10.0 h (SD = 6.7) per day of care (the principal caregivers provided 6.9 h, SD = 4.6). The informal caregivers of patients with type I SMA had a 36.3 point higher likelihood ( p < 0.05) of providing more than 10 h of care per day in comparison with caregivers of patients with type III SMA. The severity of the disease was associated with more time of care and a higher burden on the caregivers.
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    • Contributed Indexing:
      Keywords: burden of disease; informal care; spinal muscular atrophy
    • الموضوع:
      Date Created: 20201205 Date Completed: 20210204 Latest Revision: 20210204
    • الموضوع:
      20250114
    • الرقم المعرف:
      PMC7730048
    • الرقم المعرف:
      10.3390/ijerph17238989
    • الرقم المعرف:
      33276656