2024
DOI: 10.1186/s13023-024-03424-2
|View full text |Cite
|
Sign up to set email alerts
|

Experiences of mothers of long-term surviving patients with cerebral adrenoleukodystrophy: a qualitative study

Yuta Koto,
Nozomi Hadano,
Norio Sakai

Abstract: Background Adrenoleukodystrophy (ALD) is an X-linked peroxisomal disorder. Its cerebral form presents as a learning and behavioral disorder that, if untreated, leads to rapid neurological regression, disability, and death within 10 years of diagnosis. Therefore, the disease significantly impacts patients’ quality of life, making quality of life assessment crucial for effective medical treatment and care. However, no disease-specific quality of life scale exists for ALD. Therefore, we conducted … Show more

Help me understand this report

Search citation statements

Order By: Relevance

Paper Sections

Select...

Citation Types

0
0
0

Publication Types

Select...

Relationship

0
0

Authors

Journals

citations
Cited by 0 publications
references
References 45 publications
0
0
0
Order By: Relevance

No citations

Set email alert for when this publication receives citations?