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Open Access Research article

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

Anna Rosén12*, Anneli Ivarsson1, Katrina Nordyke1, Eva Karlsson3, Annelie Carlsson4, Lars Danielsson5, Lotta Högberg6 and Maria Emmelin17

Author Affiliations

1 Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden

2 Department of Medical Biosciences, Medical and Clinical Genetics, Umeå University, Umeå, Sweden

3 Pediatrics, Växjö Hospital, Växjö, Sweden

4 Department of Clinical Sciences, Pediatrics, Lund University, Lund, Sweden

5 Pediatrics, Norrtälje Hospital, Norrtälje, Sweden

6 Department of Clinical and Experimental Medicine, Pediatrics, Linköping University, Linköping, Sweden

7 Department of Clinical Sciences, Social Medicine and Global Health, Lund University, Lund, Sweden

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BMC Pediatrics 2011, 11:32  doi:10.1186/1471-2431-11-32

Published: 10 May 2011

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.