Measuring the Patient Experience in Rare Disorders: Benefit of Pragmatic Mixed-Methods Research in NUT Carcinoma

INTRODUCTION: Patient-centered outcome measurement (PCOM) is essential to capture the outcomes important to patients. However, it presents unique challenges in rare diseases, particularly those that are “young” (not diagnosed before the twenty-first century), with limited literature, lack of disease...

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Detalles Bibliográficos
Autores principales: Ciesluk, Anna, Voorhaar, Maarten, Barrett, Louise, Baldasaro, Jessica, Griebsch, Ingolf, Marquis, Patrick
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2022
Materias:
Brief Report
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8929465/
https://www.ncbi.nlm.nih.gov/pubmed/35301699
http://dx.doi.org/10.1007/s40487-022-00192-6

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8929465/
https://www.ncbi.nlm.nih.gov/pubmed/35301699
http://dx.doi.org/10.1007/s40487-022-00192-6

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