Partners of patients with celiac disease report relationship burden
SAN DIEGO — As much as 37% of partners of patients with celiac disease reported relationship burden, according to a study presented at Digestive Disease Week 2016.
“Given the multifaceted manner in which celiac disease can affect patients, it's not unreasonable to expect that the impact of celiac disease may extend to their relationship partners,” Abhik Roy, MD, gastroenterologist at New York-Presbyterian University Hospital of Columbia and Cornell, said during a presentation. “Our study shows that partner burden is quite common in celiac disease with more than one-third of partners experiencing at least mild to moderate burden.”
Although partner burden had been reported in irritable bowel syndrome and cancer, it had not been assessed in celiac disease, the researchers wrote.
To quantify the degree of relationship burden in partners and patients with celiac disease, Roy and colleagues independently surveyed 94 patients (mean age, 52.4 years) with biopsy-confirmed celiac disease at Columbia University Medical Center. They also surveyed the partner of each patient. The patients were 98% white and 93% were college-educated, 85% were married, 65% had celiac disease for longer than 5 years and their current relationship duration was an average of 24.9 years. The patients completed the Celiac Symptom Index (CSI) survey, which measures the extent of celiac disease, while their partners competed the Relationship Satisfaction (RS) scale, which measures relationship quality. In addition, the partners responded to the Zarit Burden Interview (ZBI), which measures the degree of partner burden, and answered questions about “sexual satisfaction.” Afterward, the researchers investigated the association between celiac disease and partner burden.
Sixteen percent of the patients reported a CSI score associated with a poor quality of life and 37% reported a ZBI score associated with at least mild or moderate burden. Twenty-three percent of the partners reported an RS score associated with moderate-to-low relationship satisfaction and 14% reported moderate-to-low sexual satisfaction. Overall, the researchers found that ZBI score was associated with CSI score (P = .008) and that ZBI score was inversely associated with RS score (P < .001) as well as sexual satisfaction (P < .001). The partner’s RS score (OR = 17.06; 95% CI, 2.88-101.09) and relationship duration greater than 10 years (OR = 14.42; 95% CI, 1.69-123.84) were both significantly associated with mild to moderate patient burden. In addition, 50% of partners reported that they sometimes experienced “feeling they should be doing more for the patient” and 44% reported that they sometimes experienced “feeling they could have done a better job for the patient.”
The degree of burden found in this study was similar to that reported for IBS and cancer, the researchers wrote. In addition, the researchers recommended that health care providers address these relationship factors in their care of patients with celiac disease.
“As patients and partners progress in their relationships, the burden of celiac disease seems to shift from the short term focus on diagnosis and dietary modifications to the prognostic implications and uncertainties of a chronic illness,” Roy said. “This illustrates the emotional burden of celiac disease and stresses the importance of including the partner in clinical education and counseling.” – by Will Offit
Roy A, et al. Abstract #845. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego.
Disclosure: Green reports receiving fees from Alvine and ImmusanT.