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EnglishBackground: 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.
Coping with celiac disease : how heavy is the burden for caregivers? / F. Ferretti, F. Branchi, B. Dell'Osso, D. Conte, L. Elli. - In: REVISTA ESPAÑOLA DE ENFERMEDADES DIGESTIVAS. - ISSN 1130-0108. - 109:4(2017 Feb 23), pp. 250-255.
| Titolo: | Coping with celiac disease : how heavy is the burden for caregivers? |
| Autori: | FERRETTI, FRANCESCA (Primo) BRANCHI, FEDERICA (Secondo) CONTE, DARIO (Penultimo) ELLI, LUCA (Ultimo) |
| Parole Chiave: | celiac disease; caregiver; subjective burden; chronic disease; gluten-free diet; quality of life |
| Settore Scientifico Disciplinare: | Settore MED/25 - Psichiatria Settore MED/12 - Gastroenterologia |
| Data di pubblicazione: | 23-feb-2017 |
| Rivista: | |
| Tipologia: | Article (author) |
| Digital Object Identifier (DOI): | http://dx.doi.org/10.17235/reed.2017.4518/2016 |
| Appare nelle tipologie: | 01 - Articolo su periodico |
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