Scientific study: balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents’ quality of life
- 145 Swedish adolescents with celiac disease (detected upon screening) and their parents were invited to share their experiences in a follow-up study focusing on qualitative information gained through focus groups and written narratives.
- 81% of those screened participated; the insights were gained either from the adolescents themselves or from their parents.
- Results demonstrated the screening-based diagnosis of celiac disease had varying impact on quality of life. This impact related both to changes in perceived health and to social sacrifices associated with living with celiac disease.
- The range of changes in perceived health varied from “healthy as anyone else with no positive change” to “something was wrong and then changed to the better.”
- In terms of relating experiences of living with celiac disease, responses ranged from “not a big deal” to “treatment not worth the price.”
- The authors concluded, “Screening-detected celiac disease has varying impact on adolescents’ quality of life, where their perceived change in health has to be balanced against the social sacrifices the diagnosis may cause. This needs to be taken into account in any future suggestion of celiac disease mass screening and in the management of these patients.”
When assessing the overall value of mass screening for detection of celiac disease as a public health intervention, more evaluation is needed. Particularly among adolescents, there is a trade-off between the potential positive health benefits and the possible negative social and self-perception consequences.
Rosen A, et al. Balancing health benefits and social sacrifices: A qualitative study of how screening-detected celiac disease impacts adolescents’ quality of life. BMC Pediatrics, 2011; 11:32 http://www.biomedcentral.com/1471-2431/11/32