Coping with celiac disease: how heavy is the burden for caregivers?
Rev Esp Enferm Dig
; 109(4): 250-255, 2017 Apr.
Article
em En
| MEDLINE
| ID: mdl-28229610
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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Doença Celíaca
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Cuidadores
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Efeitos Psicossociais da Doença
Tipo de estudo:
Observational_studies
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Prevalence_studies
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Prognostic_studies
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Qualitative_research
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Risk_factors_studies
Limite:
Adult
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Ano de publicação:
2017
Tipo de documento:
Article