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Sibling Support Awareness Group
A survey of adult caregivers of people with developmental and epileptic encephalopathies: A long-term care planning needs assessment
Andrade DM, Bailey LD, Meskis MA, Hood V, Ferreira S, Dixon-Salazar T, Griffin J, Perry MS.
Epilepsy Behav. 2025 Nov;172:110677. doi: 10.1016/j.yebeh.2025.110677. Epub 2025 Aug 30.
40886679
米国とカナダ
Respondents included parents/guardians (n = 121, 90.3 %) and adult siblings ≧18y (n = 13, 9.7 %).
診断名
Dravet syndrome (n = 71)
Lennox-Gastaut syndrome (n = 38)
PCDH19-related epilepsy syndrome (n = 8)
CDKL5 deficiency disorder (n = 5)
SYNGAP1-related DEE (n = 5)
STXBP1-related DEE (n = 3)
Dup15q syndrome (n = 2)
infantile spasms and NPRL2 seizure disorder (dual diagnosis, n = 1)
Fragile X syndrome (n = 1)
タグ
てんかん, 障がい
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