Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

Andrea J ChowMichael PuglieseLaure A TessierPranesh ChakrabortyRyan IversonDoug CoyleJonathan B KronickKumanan WilsonRobin HayeemsWalla Al-HertaniMichal Inbar-FeigenbergShailly Jain-GhaiAnne-Marie LabergeJulian LittleJohn J MitchellChitra PrasadKomudi SiriwardenaRebecca SparkesKathy N SpeechleySylvia StocklerYannis TrakadisJagdeep S WaliaBrenda J WilsonBeth K Potter

Published in: The patient (2021)

While caregivers' satisfaction with care for children with inherited metabolic diseases was high, we identified gaps in family-centered care and factors contributing to negative experiences that are important to consider in the future development of strategies to improve pediatric care for inherited metabolic diseases.

Keyphrases

palliative care
healthcare
quality improvement
young adults
mental health
current status
patient satisfaction