Children's perceptions of living with asthma may differ significantly from their caregivers' perceptions, which means, when they visit the doctor's office, both should be interviewed.
A new study from UT Kids San Antonio and the Center for Airway Inflammation Research (cAIR) shows this. The study analyzed the agreement between 79 children and their caregivers on health-related quality-of-life questionnaires. The children ranged in age from 5 to 17. Fifty-three were classified as having acute asthma and 26 had refractory, or treatment-resistant, asthma.
"The take-home message is that children need to be included in the communication process with health care providers, and physicians need to elicit the child's perspective on their illness, health status, asthma symptoms and what is being done to treat their illness," said senior author Pamela Wood, M.D., Distinguished Teaching Professor of pediatrics in the School of Medicine at The University of Texas Health Science Center at San Antonio.
UT Kids is the clinical practice of the Department of Pediatrics. cAIR is a newly established research center at the Health Science Center's South Texas Research Facility that focuses on controlling and preventing acute and chronic airway diseases. The director is Joel Baseman, Ph.D.
Study lead author Margaret Burks, M.D., a 2013 graduate of the School of Medicine who is now an intern at Vanderbilt University, said children should be empowered to take control of their asthma. "Encouraging an environment where children can talk freely with their caregiver is important, and can start with allowing the child to participate in the office visit," Dr. Burks said. "It is important that children feel that their response to their disease is valued, not only by their physician but by their caregiver, as well."
Children were asked to rate their own limitations on activity, while caregivers were asked to rate the effect that the children's limitations had on family activities. "Overall, children viewed themselves as less impaired, in comparison to how caregivers viewed the limitations that the asthma placed on the family," Dr. Wood said.
Parents may not want to acknowledge a lack of communication when they go to a doctor's office. "I think there is often a concern in the minds of caregivers about how they appear to the physician," Dr. Burks said. "Caregivers may not want to seem out of touch with their child's day-to-day health, and, in such fear, they may dominate the conversation at the office visit. Our study demonstrates that it is helpful to gain insight from both the caregiver and the child."
Describing life with asthma to a health care provider can be an inexact science, to be sure. "There is no gold standard," Dr. Wood said. "We can't use a thermometer to measure quality of life."