Celiac.com 01/16/2012 - Should there be mass screening for celiac disease? Currently, there is no consensus among scientists or among public policy makers in favor of mass screening for celiac disease as a public health intervention. Advocacy for mass celiac disease screening remains somewhat controversial.
A team of researchers recently conducted a mixed-method study to address the issue of mass screening for celiac disease from the perspective of newly diagnosed patients and their parents.
The team screened data from a total of 145 people with antibody-detected celiac disease. They got the data from a Swedish school-based screening study. They then invited the adolescents with celiac disease and their parents to join this study about one year after diagnosis.
In all, the team conducted 14 focus group discussions with 31 adolescents and 43 parents. They obtained written narratives from 91 adolescents (63%) and 105 parents (72%), and obtained full questionnaires from 114 parents (79%).
They then analyzed data using qualitative content analysis. They were able to use narratives and questionnaire data for quantified measures.
They found that the majority of adolescents and parents described how they agreed to participate "for the good of others," without concern for themselves.
Many found the invitation "hard to resist," since it introduced the possibility that they might have the disease. The majority who were diagnosed described the experience as "a bolt of lightning," but for many others, diagnosis offered an explanation for previous health problems. Many of those people describe how "suddenly everything made sense," once they were diagnosed.
Participants largely reported "feeling grateful for being made aware," of their celiac disease, but some adolescents and parents also reported "ambivalent feelings about personal benefits."
92% of parents supported future screening for celiac disease. The most common opinion among most adolescents and parents agreeing that mass screening should be "a right for everyone" and should be offered as early as possible.
Though most people diagnosed with celiac disease were surprised, adolescents and parents reported feeling grateful for the diagnosis.
Most kids with celiac disease and their parents participating in the study said that they welcomed mass screening for celiac disease, but suggested that it should be done earlier in life.