Patient Perspectives on the Long-term Management of Celiac Disease

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.

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.

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."

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.

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.