Balancing health benefits and social sacrifices: A qualitative study of how screening-detected celiac disease impacts adolescents' quality of life
Open accessAbstract
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.
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Some screening-identified adolescents perceive the change of their lifestyle (GFD) more as a burden than as a potential benefit.
“Particularly, some screening identified adolescents perceive the change of their lifestyle (GFD) more as a burden than as potential benefit (152).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [152]
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ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease.
Mearin, M. L., Agardh, D., Antunes, H., Al‐toma, A., Auricchio, R., Castillejo, G., Catassi, C., Ciacci, C., Discepolo, V., Dolinsek, J., et al. (2022) · Journal of pediatric gastroenterology and nutrition · doi:10.1097/mpg.0000000000003540 · Cited by 186 · see citing works
Altobelli, E., Paduano, R., Gentile, T., Caloisi, C., Marziliano, C., Necozione, S., & di Orio, F. (2013) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-11-204 · Cited by 63 · see citing works
Nordyke, K., Norström, F., Lindholm, L., Stenlund, H., Rosén, A., & Ivarsson, A. (2013) · BMC Public Health · doi:10.1186/1471-2458-13-142 · Cited by 57 · see citing works
Self-citationMyléus, A., Petersen, S., Carlsson, A., Hammarroth, S., Högberg, L., & Ivarsson, A. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-425 · Cited by 37 · see citing works
Self-citationNordyke, K., Rosén, A., Emmelin, M., & Ivarsson, A. (2014) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-12-91 · Cited by 6 · see citing works
Self-citation
- Authors
- Rosén, A., Ivarsson, A., Nordyke, K., Karlsson, E., Carlsson, A., Danielsson, L., Högberg, L., & Emmelin, M.
- Affiliations
- Umeå University (SE)
- Lund University (SE)
- Södertälje Sjukhus (SE)
- Linköping University (SE)
- Corresponding author
- Rosén, Anna
- Venue
- BMC Pediatrics
- Published
- 2011-05-10
- Volume
- 11
- Issue
- 1
- Pages
- 32-32
- ISSN
- 1471-2431 (ISSN-L)
- PMC
- PMC3120678
- OpenAlex
- W2107535295
- Cited by
- 73
- References
- 0
- Citations by year
- 2026: 5 · 2025: 6 · 2024: 8 · 2023: 4 · 2022: 4 · 2021: 2 · 2020: 3 · 2019: 4 · 2018: 2 · 2017: 4 · 2016: 4 · 2015: 4 · 2014: 11 · 2013: 7 · 2012: 3
- FWCI
- 7.55
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Pediatrics (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DiVA (Linkoping University) (submittedVersion, other-oa)
- DiVA at Umeå University (Umeå University) (submittedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Lund University Publications (Lund University) (submittedVersion, other-oa)
- Funders
- European Commission (FP6-2005-FOOD-4B-36383)
- Forskningsrådet för Arbetsliv och Socialvetenskap (FP6-2005-FOOD-4B-36383)
- Svenska Forskningsrådet Formas (FP6-2005-FOOD-4B-36383)
- Vetenskapsrådet (FP6-2005-FOOD-4B-36383)
- Umeå Universitet
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Surgery › Eosinophilic Esophagitis
- Health Sciences › Medicine › Surgery › Gastrointestinal disorders and treatments
- Keywords
- celiac disease, adolescents, quality of life, mass screening, health perception, coping strategies, perceived social support, gluten-free foods, parental experiences
- MeSH terms
- Adaptation, Psychological, Adolescent, Psychology, Adolescent, Celiac Disease, Child, Female, Humans, Insurance Benefits, Male, Parents, Quality of Life, Surveys and Questionnaires, Social Support, Social Values, Qualitative Research
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