Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups

BACKGROUND: Patient-centered health care for children with inborn errors of metabolism (IEM) and their families is important and requires an understanding of patient experiences, needs, and priorities. IEM-specific patient groups have emerged as important voices within these rare disease communities...

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發表在:J Inherit Metab Dis
Main Authors: Khangura, Sara D., Tingley, Kylie, Chakraborty, Pranesh, Coyle, Doug, Kronick, Jonathan B., Laberge, Anne-Marie, Little, Julian, Miller, Fiona A, Mitchell, John J., Prasad, Chitra, Siddiq, Shabnaz, Siriwardena, Komudi, Sparkes, Rebecca, Speechley, Kathy N., Stockler, Sylvia, Trakadis, Yannis, Wilson, Brenda J., Wilson, Kumanan, Potter, Beth K.
格式: Artigo
語言:Inglês
出版: Springer Netherlands 2015
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Original Article
在線閱讀:https://ncbi.nlm.nih.gov/pmc/articles/PMC4710640/
https://ncbi.nlm.nih.gov/pubmed/26209272
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s10545-015-9881-1
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