title: Patient perception of treatment burden is high in celiac disease compared with other common conditions.
abstract: OBJECTIVE
  The only treatment for celiac disease (CD) is life-long adherence to a gluten-free diet (GFD). Noncompliance is associated with signs and symptoms of CD, yet long-term adherence rates are poor. It is not known how the burden of the GFD compares with other medical treatments, and there are limited data on the socioeconomic factors influencing treatment adherence. In this study, we compared treatment burden and health state in CD compared with other chronic illnesses and evaluated the relationship between treatment burden and adherence.
  
  
  METHODS
  Survey was mailed to participants with CD, gastroesophageal reflux disease (GERD), irritable bowel syndrome, inflammatory bowel disease, hypertension (HTN), diabetes mellitus (DM), congestive heart failure, and end-stage renal disease (ESRD) on dialysis. Surveys included demographic information and visual analog scales measuring treatment burden, importance of treatment, disease-specific health status, and overall health status.
  
  
  RESULTS
  We collected surveys from 341 celiac and 368 non-celiac participants. Celiac participants reported high treatment burden, greater than participants with GERD or HTN and comparable to ESRD. Conversely, patients with CD reported the highest health state of all groups. Factors associated with high treatment burden in CD included poor adherence, concern regarding food cost, eating outside the home, higher income, lack of college education, and time limitations in preparing food. Poor adherence in CD was associated with increased symptoms, income, and low perceived importance of treatment.
  
  
  CONCLUSIONS
  Participants with CD have high treatment burden but also excellent overall health status in comparison with other chronic medical conditions. The significant burden of dietary therapy for CD argues for the need for safe adjuvant treatment, as well as interventions designed to lower the perceived burden of the GFD.
authors: 1] Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA [2] The first two authors contributed equally to this work and are co-first authors.
authors: Sveta
authors: S
authors: Shah
authors: 1] Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA [2] The first two authors contributed equally to this work and are co-first authors.
authors: Mona
authors: M
authors: Akbari
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Rohini
authors: R
authors: Vanga
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Ciaran P
authors: CP
authors: Kelly
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Joshua
authors: J
authors: Hansen
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Thimmaiah
authors: T
authors: Theethira
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Sohaib
authors: S
authors: Tariq
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Melinda
authors: M
authors: Dennis
authors: Celiac Center and Department of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
authors: Daniel A
authors: DA
authors: Leffler
mesh_terms: D000368:Aged; D002446:Celiac Disease / Q000178:diet therapy* / Q000191:economics / Q000523:psychology*; D003296:Cooking; D017281:Cost of Illness; D003920:Diabetes Mellitus / Q000523:psychology / Q000628:therapy; D055050:Diet, Gluten-Free / Q000191:economics / Q000523:psychology*; D004522:Educational Status; D005502:Food / Q000191:economics; D005764:Gastroesophageal Reflux / Q000523:psychology / Q000628:therapy; D006304:Health Status; D006306:Health Surveys; D006333:Heart Failure / Q000523:psychology / Q000628:therapy; D006801:Humans; D006973:Hypertension / Q000523:psychology / Q000628:therapy; D007182:Income; D015212:Inflammatory Bowel Diseases / Q000523:psychology / Q000628:therapy; D043183:Irritable Bowel Syndrome / Q000523:psychology / Q000628:therapy; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy; D008875:Middle Aged; D010349:Patient Compliance; D010465:Perception; D012720:Severity of Illness Index; D013997:Time Factors; D055815:Young Adult