title: Coping with celiac disease: how heavy is the burden for caregivers?
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Pathophysiology and Transplantation, Università degli studi di Milano - Fondazione IRCCS Cà Granda-Ospedale Maggiore Policlinico, Italy.
authors.forename: Francesca
authors.initials: F
authors.lastname: Ferretti
authors.affiliation: Department of Pathophysiology and Transplantation, Università degli studi di Milano - Fondazione IRCCS Cà Granda-Ospedale Maggiore Policlinico, Italia.
authors.forename: Federica
authors.initials: F
authors.lastname: Branchi
authors.affiliation: Department of Psychiatry, Università degli Studi di Milano - Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Italy.
authors.forename: Bernardo
authors.initials: B
authors.lastname: Dell'Osso
authors.affiliation: Department of Pathophysiology and Transplantation, Fondazione IRCCS Cà Granda-Ospedale Maggiore Policlinico, Italia.
authors.forename: Dario
authors.initials: D
authors.lastname: Conte
authors.affiliation: Celiac Disease Center, Fondazione IRCCS Ca' Granda, Italy.
authors.forename: Luca
authors.initials: L
authors.lastname: Elli
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002446:Celiac Disease / Q000178:diet therapy / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D055050:Diet, Gluten-Free; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012959:Socioeconomic Factors