Sick kids rate their quality of life higher than do their parents

By Will Boggs MD

NEW YORK (Reuters Health) - Young children with congenital health conditions tend to report higher quality of life (QoL) than their parents report for them, researchers from UK have found.

"I would hope that the evidence reviewed in this systematic review would demonstrate to health care professionals that we should be assessing quality of life (QoL) in children with medical conditions and that this assessment would include the child's self-report on their QoL and not rely on proxy reports," Dr. Judith Rankin from Newcastle University in Newcastle upon Tyne told Reuters Health by email.

Dr. Rankin's team synthesized the findings from 37 studies of self-reported QoL in children under age 12 years with a congenital health condition. They also examined the agreement between self-report and parent proxy where both were available.

Irrespective of the condition the children had or the QoL assessment instrument used, children often reported similar scores for their QoL compared with the reference scores, the researchers note in Pediatrics, online September 22.

In the 21 studies that collected QoL data from both children and their parents, most reported that a child's perception of QoL differed from that of the parents, with parents commonly underestimating their children's QoL, especially in such subjective domains as emotional and psychosocial health.

Depending on the specific condition, younger children tended to report better overall QoL, but there were significant differences in QoL impairments according to domain between younger and older age groups.

The few studies that included very young children found that children as young as four years old were able to report their QoL if assisted by specially designed questionnaires with simplified response scales or an interview.

"The studies included in the review used a variety of instruments, some general and some condition-specific," Dr. Rankin explained. "The review did not set out to recommend one test but to demonstrate that young children (<12 years) can self-report their QoL and that this should be included in decisions on their health care."

"As usual with such reviews, we need more research in this area, i.e., more studies examining children's self-report QoL, assessing QoL at different ages using validated instruments," Dr. Rankin said.

Dr. Carlos Carona from University of Coimbra in Portugal has studied health-related QoL in vulnerable children and youth. "The findings illustrate that self- and proxy reports on the quality of life (QoL) of children with chronic conditions are complementary and they cannot effectively supplant each other," he told Reuters Health by email.

"QoL assessments should be sensitive to age-related specificities (e.g., 5-7 year olds and 8-10 year olds clearly face different developmental contexts and challenges)," added Dr. Carona, who did not take part of the new study.

Dr. Anne Klassen from McMaster University in Hamilton, Ontario, Canada, who has also done research in the area, said, "Parents are not always the most reliable in reporting a child's QoL, so we need to ask the child. The measures used to test QoL need to be chosen based on the research question. If the measures don't ask what is important to the children, the measures will not measure what is important to the children."

"The best test is the one that has content validity for the patient group being assessed," Dr. Klassen told Reuters Health by email. "I cannot stress this enough. It is all about the items and what these cover and how they are worded. The problem with generic measures is that they are not designed to cover the particular issues for any patient group."

"The risk in using measures that aren't developed to include content that is important to children is that clinically important changes with interventions won't be identified, meaning that some interventions will show no difference in measurement when there is a real clinical difference that has taken place," she concluded.

SOURCE: http://bit.ly/1qpAyxs

Pediatrics 2014.

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