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Health-related quality of life lower in parents of children with metabolic disease
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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.”
Using an explorative descriptive survey design, Thomas and colleagues analyzed data from 72 parents of children with metabolic diseases visiting the outpatient department of Sultan Qaboos University Hospital between October 2014 and March 2014 (45.8% men). Participants completed the RAND 36-item Health Survey, translated into Arabic.
Within the cohort, 88.9% of parents were married; 67% had one affected child; 39% of the children required hospitalization once within 12 months; and 12.5% of children required hospitalization once within 1 month.
Researchers found that parents of children with metabolic diseases had lower mean scores in subscales of general health and energy, with the highest mean scores reported for the pain subscale and physical role limitation.
“The higher mean scores of pain scale and physical role limitation suggest that these problems did not lead to low health-related quality of life,” the researchers wrote.
Parents with a higher monthly income (> 1,000 Omani rials) had the highest physical and mental component summary scores vs. parents with a monthly income of 500 Omani rials. Parents with higher education levels and those aged 20 to 40 years also showed higher physical and mental health scores vs. those aged at least 50 years. Researchers also found an association between presence of support persons and health-related quality of life in the dimensions of role limitations due to physical functioning (P = .03) and social functioning (P = .04), and an association between health-related quality of life in the dimensions of general health and preparation of a special diet for the child (P = .02).
“The impact of the disease condition is extremely hard for the parents,” the researchers wrote. “Providing education and psychosocial support may improve the health-related quality of life of the parents, which, indeed, results in better care for their children. Assessment of [health-related quality of life] of the parents, if done routinely, could benefit the parents by rendering extra support and education for the parents when required.” – by Regina Schaffer
Disclosure: The researchers report no relevant financial disclosures.
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