Balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents' quality of life

Anna Rosén, Anneli Ivarsson, Katrina Nordyke, Eva Karlsson, Annelie Carlsson, Lars Danielsson, Lotta Högberg, Maria Emmelin, Anna Rosén, Anneli Ivarsson, Katrina Nordyke, Eva Karlsson, Annelie Carlsson, Lars Danielsson, Lotta Högberg, Maria Emmelin

Abstract

Background: Celiac disease often goes undiagnosed. Mass screening might be an option to reduce the public health burden of untreated celiac disease. However, mass screening is still controversial since it is uncertain whether the benefits of early detection outweigh the possible negative consequences. Before implementation of screening programs, the experiences of those being identified as cases should be considered. The aim of our study was to explore how screening-detected celiac disease impacts adolescents' quality of life, as perceived by themselves and their parents.

Methods: All adolescents (n = 145) with screening-detected celiac disease found in a Swedish screening study, and their parents, were invited to share their experiences in a qualitative follow-up study. In total, we have information on 117 (81%) of the adolescents, either from the adolescents themselves (n = 101) and/or from their parent/s (n = 125). Written narratives were submitted by 91 adolescents and 105 parents. In addition, 14 focus group discussions involving 31 adolescents and 43 parents were conducted. Data was transcribed verbatim and analyzed based on a Grounded Theory framework.

Results: The screening-detected celiac disease diagnosis had varying impact on quality of life that related both to changes in perceived health and to the adolescents' experiences of living with celiac disease in terms of social sacrifices. Changes in perceived health varied from "healthy as anyone else with no positive change" to "something was wrong and then changed to the better", whereas experiences of living with celiac disease ranged from "not a big deal" to "treatment not worth the price". Perceptions about living with celiac disease and related coping strategies were influenced by contextual factors, such as perceived support from significant others and availability of gluten-free products, and were developed without a direct relation to experiencing changes in perceived health.

Conclusions: 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.

Figures

Figure 1
Figure 1
The process of Grounded Theory analysis, moving from the text to theoretically constructed categories.
Figure 2
Figure 2
A conceptual model of how a screening-detected CD diagnosis impacts on adolescents' quality of life. The model illustrates that changes in perceived health have to be balanced against adolescents' experiences of living with celiac disease. Thus, the impact on quality of life can be characterized as balancing health benefits and social sacrifices.

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