Atıf İçin Kopyala
YILDIZ Y., SİVRİ H. S.
TURKISH ARCHIVES OF PEDIATRICS, cilt.56, sa.6, ss.602-609, 2021 (ESCI)
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Yayın Türü:
Makale / Tam Makale
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Cilt numarası:
56
Sayı:
6
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Basım Tarihi:
2021
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Doi Numarası:
10.5152/turkarchpediatr.2021.21235
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Dergi Adı:
TURKISH ARCHIVES OF PEDIATRICS
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Derginin Tarandığı İndeksler:
Emerging Sources Citation Index (ESCI), TR DİZİN (ULAKBİM)
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Sayfa Sayıları:
ss.602-609
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Anahtar Kelimeler:
Burden of disease, caregiver burden, enzyme replacement therapy, inborn errors of metabolism, lysosomal storage diseases, mucopolysaccharidosis, questionnaire, Turkey, HOME INFUSION, CHALLENGES, VI, DISORDERS, SAFE
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Hacettepe Üniversitesi Adresli:
Evet
Özet
Background: Mucopolysaccharidoses are extremely rare, progressive, often severe multi-system disorders, some of which are managed by weekly intravenous enzyme replacement therapy. This study aimed to determine the difficulties faced by the patients with mucopolysac-charidosis and their families due to enzyme replacement therapy.