To our knowledge, this is the first study to examine dietitian use and outcomes as measured by validated CD-specific instruments. We were surprised at the lack of association between dietitian use, dietary adherence and quality of life. The study has several limitations, including selection bias, self-reported outcomes, and poor generalizability, however prior literature addressing these issues is similarly limited. While our findings are preliminary, they should provide impetus to further study the role of dietary counseling in CD management.
Several studies have examined dietitian use in CD, with frequently divergent results. Ukkola et al.
] surveyed 698 newly diagnosed CD patients on their perceptions of living with CD, and found no correlation between dietitian follow-up and patients’ knowledge of GFD or experience of their disease. A similar proportion of patients in this cohort (76%) had received dietitian counseling as in our sample (79%). The authors note that despite a lack of correlation, patients often requested more detailed dietary counseling when asked to indicate in their own words their wishes/needs, suggesting insufficient dietitian contact.
One outcome measure that has been demonstrated to be associated with dietitian use is improved GFD adherence, but this was not seen in our cohort. Wylie et al
] concluded in a prospective cohort of 99 patients that annual review within the context of a dietitian-led celiac clinic can significantly improve adherence as well as other nutritional markers. In a systemic review of 38 studies examining factors associated with adherence to GFD, Hall et al
] also concluded that regular dietetic follow-up and annual review in a dietitian-led clinic can improve adherence. Membership of a patient support group has been associated with adherence, and studies with cohorts recruited from patient support groups trend towards higher adherence rates (66%–90% strict adherence) than clinical samples (42%–91%) [26
]. There are several possible reasons why these results might diverge from that of our study. First, dietitian use was common in our study (approaching 80%), leading to a small sample size for patients who had not seen a dietitian, and hence decreased ability to detect a difference. Our cohort was very highly educated, with almost 90% of patients having a college degree or higher qualification, as compared to a US-wide average of 28% [27
]. It may be that university-educated patients may have less to gain from dietitian referral: they are more health-literate at baseline, and are better equipped to seek out and utilize information from other sources in addition to their health professional. As such, the high prevalence of highly educated patients in our cohort may have reduced the effect size of dietitian exposure. Hall et al.
] included studies that assessed GFD adherence via a trained nutritionist assessment, which may be more sensitive for differences than use of the self-reported CDAT questionnaire. Last, cultural factors can influence response to dietary interventions. In a cross-sectional survey from 2004, Butterworth et al
] noted that South Asian patients with CD were much less likely than Caucasians to be members of a support group (53% vs.
= 0.02), were more frequently dissatisfied with dietetic advice (30% vs.
= 0.01), and exhibited a trend towards poorer dietetic follow-up (31% vs.
= NS). Dietetic follow-up correlated with GFD compliance for Caucasians but not for South Asians in that study. It is unclear to what extent these cultural issues apply to our cohort.
Although dietitian use was common in this study, almost half of these patients had only seen a dietitian once, possibly at diagnosis, falling short of CD treatment guidelines. Guidelines published by several authorities generally recommend annual dietitian review. The American Gastroenterological Association position statement on diagnosis and management of CD advises consultation with an experienced dietitian at initiation of a treatment plan and ongoing evaluation at regular intervals by a health care team including a dietitian [12
]. Several other organizations also publish guidelines recommending ongoing dietitian involvement, including the NIH, the United States Department of Health and Human Services Agency for Healthcare Research and Quality, the National Institute for Health and Clinical Excellence in the United Kingdom, and the World Gastroenterology Association [14
]. Given a median time since diagnosis of 5–10 years in this cohort, dietitian involvement fell well short of recommendations in a significant proportion of patients and insufficient dietitian follow-up may have contributed to the lack of effect on outcomes.
A long delay of >10 years from symptom onset to diagnosis of CD was associated with poor quality of life in this cohort. Prior studies have addressed the influence of delayed diagnosis on CD outcomes. In a survey of over 1000 patients with CD from Sweden, the mean delay to diagnosis from first symptoms was 9.7 years, and 5.8 years from the first doctor visit [30
]. A long delay was associated with lower quality-adjusted life year scores prior to treatment; however delay in diagnosis had no effect on scores following initiation of GFD. The study concluded that untreated CD resulted in poor quality of life, which returned to baseline with treatment. Our findings of persistent quality of life impairment even following initiation of GFD are novel and warrant further study.
The limitations of this study include recruitment from a tertiary referral center (the Celiac Disease Center of Columbia University) and support groups, leading to a cohort that is likely to have greater health literacy than average. The sample size for patients who had not seen a dietitian was low, limiting our power to detect a difference in CD outcomes. The actual response rate of the survey is unable to be determined as the survey link may have been electronically forwarded by subjects to other members of support groups or known contacts with celiac disease. In addition we did not have information on the quality, nor expertise and practice setting of the dietitians used by the respondents.