Patient Perspectives on the Long-term Management of Celiac Disease

Goal: The aim of this study was to survey adults with celiac disease (CD) on the utility of specific aspects of follow-up and on information needs.

Background: Currently, the treatment for CD is strict gluten avoidance. Although this places the onus on the patient for disease management, patient perspectives on CD care have not been formally assessed.

Study: The Manitoba Celiac Disease Cohort prospectively enrolled adults newly diagnosed with CD using serology and histology. At the 24-month study visits, participants rated the utility of aspects of CD care on a 5-point scale anchored by "not at all useful" and "very useful" and the helpfulness of information on CD-related topics on a 6-point scale anchored by "not at all helpful" and "very helpful."

Results: The online survey was completed by 149 of 211 cohort members [median age 40 (interquartile range 30 to 56) y; 68% female]. Adherence to a gluten-free diet was good. Most participants (87%) responded that they should be seen regularly for medical follow-up of CD, preferably every 6 (26%) or 12 months (48%). Blood tests were the most highly rated care component (rated scored ≥4/5 by 78% of respondents), followed by the opportunity to ask about vitamins and supplements (50%), symptom review (47%), and information on CD research (44%). Diet review was not considered helpful.

Conclusions: Two years after diagnosis, most individuals with CD find regular specialist follow-up helpful, particularly for biochemical assessment of disease activity and its complications. Furthermore, information on research and long-term complications of CD is also valued.