Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric p...
Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases
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Publisher
England: BioMed Central Ltd
Journal title
Language
English
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Publisher
England: BioMed Central Ltd
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Scope and Contents
Contents
Challenges faced by children diagnosed with a rare disease or complex condition and their family members are often characterized by disease-specific complexities, such as a prolonged diagnostic process, an uncertain prognosis, and the absence of curative treatment. The psychological burden of living with a rare disease or complex condition is often...
Alternative Titles
Full title
Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases
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TN_cdi_doaj_primary_oai_doaj_org_article_512d7ea448b54288b11842ca48214193
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_512d7ea448b54288b11842ca48214193
Other Identifiers
ISSN
1750-1172
E-ISSN
1750-1172
DOI
10.1186/s13023-022-02305-w
