Coping with celiac disease: how heavy is the burden for caregivers?
Rev. esp. enferm. dig
; 109(4): 250-255, abr. 2017. tab, graf
Article
in English
| IBECS
| ID: ibc-161998
Responsible library:
ES1.1
Localization: BNCS
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 (AU)RESUMEN
No disponible
Full text:
Available
Collection:
National databases
/
Spain
Health context:
Neglected Diseases
Health problem:
Diarrhea
Database:
IBECS
Main subject:
Celiac Disease
/
Chronic Disease
/
Caregivers
/
Diet, Gluten-Free
Type of study:
Observational study
/
Prevalence study
/
Prognostic study
/
Qualitative research
/
Risk factors
Aspects:
Patient-preference
Limits:
Adult
/
Humans
Language:
English
Journal:
Rev. esp. enferm. dig
Year:
2017
Document type:
Article
Institution/Affiliation country:
Ospedale Maggiore Policlinico/Italy