July 27, 2016
Parents of children with congenital disorders of metabolism tend to have a lower health-related quality of life vs. parents of children without metabolic disease, with results mediated by parental age, monthly income and level of education, according to recent survey data.
“[Inborn errors of metabolism] is a chronic disorder affecting the child as well as the entire family,” Deepa Shaji Thomas, BSN, MSN, RN, lecturer at the College of Nursing at Sultan Qaboos University in Oman, and colleagues wrote. “Most [inborn errors of metabolism] require [an] individually tailored diet, frequent blood checks and visits to pediatric centers. Altogether, these make the treatment intricate and require a lot of commitment from the part of parents and other family members ... due to the chronic condition of the child, [health-related quality of life] of the parents appears to be reduced.”