Partner Burden: A Common Entity in Celiac Disease

Dig Dis Sci. 2016 Dec;61(12):3451-3459. doi: 10.1007/s10620-016-4175-5. Epub 2016 Apr 28.


Background: Caregiver burden is documented in several chronic diseases, but it has not been investigated in celiac disease (CD).

Aims: We aim to quantify the burden to partners of CD patients and identify factors that affect the perceived burden.

Methods: We surveyed patients with biopsy-proven CD and their partners. Patients completed CD-specific questions, including the validated Celiac Symptom Index (CSI) survey. Partners completed the validated Zarit Burden Interview (ZBI) and questions regarding sexual and relationship satisfaction. Univariable and multivariable analyses were used to assess the association between demographics, CD characteristics, and partner burden.

Results: In total, 94 patient/partner pairs were studied. Fifteen patients (16 %) reported a CSI score associated with a poor quality of life, and 34 partners (37 %) reported a ZBI score corresponding to mild-to-moderate burden. Twenty-two partners (23 %) reported moderate-to-low overall relationship satisfaction, and 12 (14 %) reported moderate-to-low sexual satisfaction. The degree of partner burden was directly correlated with patient CSI score (r = 0.27; p = 0.008), and there were moderate-to-strong inverse relationships between partners' burden and relationship quality (r = -0.70; p < 0.001) and sexual satisfaction (r = -0.42; p < 0.001). On multivariable logistic regression, predictors of mild-to-moderate partner burden were low partner relationship satisfaction (OR 17.06, 95 % CI 2.88-101.09, p = 0.002) and relationship duration ≥10 years (OR 14.42, 95 % CI 1.69-123.84, p = 0.02).

Conclusions: Partner burden is common in CD, with more than one-third of partners experiencing mild-to-moderate burden. Partner burden is directly correlated with patient symptom severity, and it increases with poorer sexual and relationship satisfaction. Healthcare providers should address relationship factors in their care of patients with CD.

Keywords: Burden of illness; Celiac disease; Marital relationship; Symptom assessment.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers
  • Celiac Disease / diet therapy*
  • Celiac Disease / physiopathology
  • Cost of Illness
  • Cross-Sectional Studies
  • Female
  • Humans
  • Interpersonal Relations
  • Logistic Models
  • Male
  • Middle Aged
  • Multivariate Analysis
  • Patient Compliance
  • Personal Satisfaction*
  • Quality of Life*
  • Severity of Illness Index
  • Sexual Behavior
  • Spouses*
  • Time Factors
  • Young Adult