A new report out looks into how children diagnosed with celiac in a mass screening think their health-related quality of life has changed with the diagnosis and gluten-free lifestyle.
The report was published on the Umea University’s website Friday, the day Katrina Nordyke was defending her thesis on the subject.
The thesis coincides with a study co-authored by Nordyke and published last February that researched a mass screening of a 6th grade/12-year-old population group. That screening found cases of unrecognized celiac and looked at how the quality of life was impacted for those celiac children.
The research published in February said adolescents with “unrecognized celiac disease experience similar health-related quality of life as their peers without celiac disease, both before and one year after diagnosis and initiation of the gluten free diet.”
Nordyke appears to be taking this research one step further in her thesis. According to Umea University, Nordyke examined the “experiences and results of screening to detect celiac in these children…[and] the results are ambiguous.” Nordyke said, “there was no consensus that the detection of [celiac] disease and treatment results in an increased health-related quality of life.”
How does she know this? The kids in the research wrote short stories describing their screening experience, before getting the test results. This showed some fear and anxiety, but most kids handled it well. There were also surveys that children also filled out about the health-related quality of life at the time of the testing and one year later. Children who were diagnosed with celiac wrote new stories one and five years after being diagnosed.
These stories, according to Nordyke, show the “threat from complications caused by the disease affected how young people experienced the diagnosis, how they coped with the gluten-free diet and what they thought of screening for celiac disease.”
Five years after diagnosis, the kids have learned how to cope with the gluten-free lifestyle. But, Nordyke says, “at the same time, some of these young people still doubt the benefits of having been diagnosed with celiac disease through screening.”
This is where the report ends. I think it still begs some questions like, how symptomatic were some of these kids? If they were really sick pre-diagnosis, I would think they would have a different perspective. On the other hand I wonder if it is a good thing that they don’t see much difference. Maybe if they feel like everyone else, they don’t feel so isolated as some have described in the past.
Finally what does this mean for mass screening? If the kids don’t really feel any different, do they think the screening wasn’t necessary?
Anyway, I still have some questions, but I think it was interesting new information to share. We’ll have to wait and find out more!