Porphyria Research in Canada
Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups
Authors: Sara D. Khangura, Kylie Tingley, Pranesh Chakraborty, Doug Coyle, Jonathan B. Kronick, Anne-Marie Laberge, Julian Little, Fiona A Miller, John J. Mitchell, Chitra Prasad, Shabnaz Siddiq, Komudi Siriwardena, Rebecca Sparkes, Kathy N. Speechley, Sylvia Stockler, Yannis Trakadis, Brenda J. Wilson, Kumanan Wilson, Beth K. Potter on behalf of the Canadian Inherited Metabolic Diseases Research Network (CIMDRN)
This article is published with open access at Springerlink.com
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-centered research and care.