Indianapolis -- Doing more is not always better. Improving the quality of medical care does not necessarily dictate providing additional care. And in the case of children with Down syndrome, routine screening for celiac disease in children without symptoms of the disease, as recommended by at least one medical professional organization, does more harm than good according to a study by Indiana University School of Medicine researchers published in the August issue of Pediatrics.
"Although there are tests to find out whether a child with Down syndrome has celiac disease before the child develops symptoms, early treatment does not appear to improve the child's quality of life or improve outcomes from one of the long-term consequences of celiac disease, non-Hodgkin's lymphoma," said Nancy Swigonski, M.D., M.P.H., the study's first author and an associate professor of pediatrics at the Indiana University School of Medicine and affiliated scientist of the Regenstrief Institute, Inc.
Celiac disease is a genetic autoimmune disorder that damages the small intestine and interferes with absorption of nutrients from food. Individuals with celiac disease cannot tolerate gluten, a protein found in wheat, rye, and barley. Untreated celiac disease is thought to increase the risk of intestinal lymphoma.
Using decision analysis, a tool for weighing alternative courses of action in terms of their potential benefits and liabilities, the researchers looked at the potential benefit of preventing gastrointestinal malignancy by detecting celiac disease in children without symptoms of the disease and weighed the benefit against the cost and quality of life issues associated with screening and treatment of celiac disease. They also calculated the number of asymptomatic children with Down syndrome who needed to be screened to prevent a single case of lymphoma.
The researchers report that routine screening of all children with Down syndrome would cost $500,000 per life-year gained and that screening all asymptomatic children with Down syndrome for celiac disease would cost almost $5 million to prevent a single case of lymphoma.
And the financial cost of routine screening those without symptoms of celiac disease is far from the only issue. Even small decrements in the quality of a child's life caused by dietary restrictions more than off-set the trivial and unproven reduction in the risk of lymphoma.
"As a pediatrician, I know the treatment of celiac disease places a burden on the patient and on the family. The strict gluten-free dietary constraints (the recommended treatment) are not only costly, but more importantly, they make the child stand out when most patients and families are working very hard to integrate the child into society. We have many tools, tests and procedures that can be done but we need to use evidence-based medicine and family-centered care to make effective decisions for the assessment and care of children." said Dr. Swigonski.
An accompanying commentary written by two Brown University physicians noted, "This is an example of where doing more is not better – despite good intentions harm can be done and resources may be wasted."
While rejecting routine screening for celiac disease in children without symptoms, the authors of the study do call for a low threshold for testing for celiac disease in children and adults with Down syndrome who have symptoms of celiac disease.
Co-authors of the study are Heather Kuhlenschmidt, M.D., Marilyn J. Bull, M.D., Mark R. Corkins, M.D., and Stephen M. Downs, M.D., M.S., all of the Department of Pediatrics of the Indiana University School of Medicine. Dr. Downs, who heads the Pediatrics Department's Division of Child Health Services Research and is director of general and community pediatrics, is also a Regenstrief Institute, Inc. affiliated scientist.
"Often medical interventions seem intuitively good on the surface, but careful analysis of the evidence and the trade-offs patients face sometimes uncovers unintended harms or unreasonable costs," according to Dr. Downs, senior author of the study.
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PEDIATRICS