[HTML][HTML] Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups
SD Khangura, K Tingley, P Chakraborty… - Journal of Inherited …, 2016 - Springer
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 and are uniquely positioned to contribute to this understanding.
We conducted qualitative interviews with IEM patient group representatives to increase
understanding of patient and family experiences, needs, and priorities and inform patient …
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 and are uniquely positioned to contribute to this understanding.
We conducted qualitative interviews with IEM patient group representatives to increase
understanding of patient and family experiences, needs, and priorities and inform patient …
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 and are uniquely positioned to contribute to this understanding.
We conducted qualitative interviews with IEM patient group representatives to increase
understanding of patient and family experiences, needs, and priorities and inform patient …
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 and are uniquely positioned to contribute to this understanding.
We conducted qualitative interviews with IEM patient group representatives to increase
understanding of patient and family experiences, needs, and priorities and inform patient …
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