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Status: Bibliographieeintrag

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Verfasst von:Hoffmann, Frederik [VerfasserIn]   i
 Ries, Markus [VerfasserIn]   i
Titel:Response to: Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses
Verf.angabe:Frederik Hoffmann, Markus Ries
E-Jahr:2021
Jahr:08 April 2021
Umfang:3 S.
Teil:volume:16
 year:2021
 elocationid:165
 pages:3-5
 extent:3
Fussnoten:Gesehen am 25.05.2021
Titel Quelle:Enthalten in: Orphanet journal of rare diseases
Ort Quelle:London : BioMed Central, 2006
Jahr Quelle:2021
Band/Heft Quelle:16(2021), Artikel-ID 165, Seite 3-5
ISSN Quelle:1750-1172
Abstract:The mucopolysaccharidoses (MPS) are a group of rare, genetic, lysosomal storage disorders characterized by progressive, multisystemic accumulation of glycosaminoglycans. Individuals with severe MPS often present with significant neurological involvement and may exhibit challenging behaviors, including hyperactivity, aggression, and sleep disturbance. These behaviors can cause adverse outcomes and necessitate the development of specific measures to support affected families. Through an analysis of the results reported by Hoffmann et al. in their recent study, this letter outlines important factors that must be considered when evaluating the impact of challenging behaviors associated with MPS, including treatment history, age, sibling and family relationships, the feasibility of daily caregiving, and caregiver burden. These recommendations can help guide future studies to identify the most effective coping strategies to support families of people with MPS who have challenging behaviors.
Datenträger:Online-Ressource
Sprache:eng
Bibliogr. Hinweis:Ergänzung zu: Grant, Nathan: Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses, in: Orphanet journal of rare diseases
Sach-SW:Aggression
 Caregivers
 Challenging behavior
 Coping
 MPS
 Mucopolysaccharidoses
 Siblings
 Support
K10plus-PPN:1758392940
Verknüpfungen:→ Zeitschrift

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