The purpose of this research was to assess the importance of different components of follow-up and the informational requirements of people with celiac disease (CD). Gluten-free diets are the current standard of care for CD. Though this puts the onus of disease treatment on the individual, patient perceptions of CD care have yet to be formally evaluated.
Newly diagnosed adults with CD were prospectively enrolled in the Manitoba Celiac Disease Cohort. Aspects of CD care were scored on a 5-point scale anchored by “not at all useful” and “extremely useful” by participants, and knowledge on CD-related issues was rated on a 6-point scale anchored by “not at all helpful” and “very helpful” by participants during the 24-month study visits. Only 149 out of 211 cohort members (median age 40, interquartile range 30-56) years and 68% female) responded to the online survey. Good progress was made in maintaining a gluten-free diet. About 87% of respondents agreed that those with CD should have regular medical follow-ups most ideally every 6 months (26% of respondents) or 12 months (48% of respondents).
About 78% of respondents regarded blood tests as excellent or good, followed by the option to inquire about vitamins and supplements (50%), a discussion of symptoms (47%), and information on CD research (44%). Those polled felt that reevaluating their diets was unnecessary. Most people with CD feel better with regular professional follow-up after 2 years, especially for biochemical assessment of disease activity and its consequences. In addition, details about ongoing studies and chronic CD complications are welcome.
Source: journals.lww.com/jcge/Abstract/2022/11000/Patient_Perspectives_on_the_Long_term_Management.9.aspx
