Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases

BACKGROUND: 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 burd...

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Detalles Bibliográficos
Autores principales: Smits, Rosanne M., Vissers, Eline, te Pas, Rosan, Roebbers, Noor, Feitz, Wout F. J., van Rooij, Iris A. L. M., de Blaauw, Ivo, Verhaak, Chris M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8981675/
https://www.ncbi.nlm.nih.gov/pubmed/35379257
http://dx.doi.org/10.1186/s13023-022-02305-w

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