Coping with celiac disease: how heavy is the burden for caregivers?

• Francesca Ferretti ^[1] ; Federica Branchi ^[1] ; Bernardo Dell'Osso ^[2] ; Dario Conte ^[1] ; Luca Elli ^[1]
  1. [1] Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico

     Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico

     Milán, Italia

     
  2. [2] University of Milan

     University of Milan

     Milán, Italia

     
• Localización: Revista Española de Enfermedades Digestivas, ISSN-e 2340-4167, ISSN 1130-0108, Vol. 109, Nº. 4, 2017, págs. 250-255
• Idioma: inglés
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• Resumen

  • 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