Year 2017 / Volume 109 / Number 4
Original
Coping with celiac disease: how heavy is the burden for caregivers?

250-255

DOI: 10.17235/reed.2017.4518/2016

Francesca Ferretti, Federica Branchi, Bernardo Dell'Osso, Dario Conte, Luca Elli,

Abstract
Background: Celiac disease (CD) is the most common chronic enteropathy demanding a lifelong gluten-free diet. Objective: The aim of the study was to identify and estimate the subjective burden of caregivers of celiac patients. Methods: A cross-sectional observational study was conducted during the regional meeting of the Italian Society for the Celiac Disease in April 2014. A written self-administered anonymous questionnaire enquired into caregivers’ demographic profile, natural history of patients’ disease and caregivers’ self-reported degree of burden at the onset of symptoms (T0), at CD diagnosis (T1) and during follow-up (T2). Fifty-five caregivers completed the questionnaire (69% females, 47 ± 13 years old, 73% first-degree relatives). Results: The presence of warning symptoms, such as abdominal pain, chronic diarrhea and weight loss was responsible for higher levels of concern. A statistically significant reduction of concern in the follow-up was demonstrated by the comparison of visual analogue scales (VAS) values from T0 to T2 and from T1 to T2 (6.8 ± 3.1 vs 4.2 ± 2.9 and 7.0 ± 2.5 vs 4.2 ± 2.9, respectively; p < 0.001), mirroring the reduction of distress among newly diagnosed individuals. A global impact of gluten-free diet and CD on quality of life was reported in VASs (6.7 ± 2.4). Family (5.4 ± 3.1), social (5.6 ± 2.9) and economic (4.5 ± 3.4) domains were the most associated. Conclusion: The assessment of caregivers’ subjective burden should be considered as an essential step in the evaluation of celiac patients, needing a specific investigation and support.
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Ferretti F, Branchi F, Dell'Osso B, Conte D, Elli L. Coping with celiac disease: how heavy is the burden for caregivers?. 4518/2016


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Publication history

Received: 29/06/2016

Accepted: 01/12/2016

Online First: 23/02/2017

Published: 31/03/2017

Article revision time: 152 days

Article Online First time: 239 days

Article editing time: 275 days


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