Coeliac disease: the association between quality of life and social support network participation

BACKGROUND: There is little information available on the use of social support systems for patients with coeliac disease (CD). We performed a cross-sectional study aiming to examine the association between participation in different types of social support networks and quality of life (QOL) in adults with CD. METHODS: A survey including a validated CD specific QOL instrument was administered online and in-person to adults with CD who were following a gluten-free diet. Participation in social support networks (type, frequency and duration) were assessed. RESULTS: Among the 2138 participants, overall QOL scores were high, averaging 68.9 out of 100. Significant differences in QOL scores were found for age, length of time since diagnosis and level of education. Most (58%) reported using no social support networks. Of the 42% reporting use of social support networks (online 17.9%, face-to-face 10.8% or both 12.8%), QOL scores were higher for those individuals who used only face-to-face social support compared to only online support (72.6 versus 66.7; P < 0.0001). A longer duration of face-to-face social support use was associated with higher QOL scores (P < 0.0005). By contrast, a longer duration and increased frequency of online social support use was associated with lower QOL scores (P < 0.03). CONCLUSIONS: Participation in face-to-face social support networks is associated with greater QOL scores compared to online social support networks. These findings have potential implications for the management of individuals with CD. Emphasis on face-to-face support may improve long-term QOL and patient outcomes.