Background
CD is a chronic immune-mediated gastrointestinal illness that affects ~ 1% of patients in the United States [
1]. CD is triggered by consumption of foods containing gluten (a protein in wheat, rye, and barley) and the immune response produces antibodies against tissue transglutaminase (tTG). The result is an inflammatory reaction caused by cytokines in response to deamidated gluten molecules, which leads to villous atrophy in the small intestine [
2]. Patients may present with a variety of symptoms including abdominal pain, diarrhea, steatorrhea, fatigue, weight loss and bloating. [
3]
Diagnostic evaluation for CD patients includes screen with serology testing for IgA anti-tTG antibodies, IgG anti-tTG antibodies with serum IgA levels (if a patient is suspected to be IgA deficient) and confirmation with duodenal biopsy with histological analysis, which is the gold standard test for CD diagnosis. To confirm a diagnosis of CD, patients must be on a normal diet prior to serology testing. Further evaluation of CD may include repeat endoscopic evaluation for tissue analysis, repeat serology for antibody detection, and bone mineral density (BMD) testing. [
4]
Current treatment for CD is strict life-long adherence to a GFD, which requires effective patient education, individual motivation, and frequent follow-up visits. Despite patients recognizing its importance, adherence to a strict GFD poses a great challenge for many people with CD [
5]. Patients with poor adherence to a GFD have reported lower scores on quality-of-life assessments [
6] and may also have an increased risk of mortality [
7]. Thus, in order to improve the quality of life and survival of CD patients, a thorough review of both initial and repeat diagnostic tests, patient outcomes, follow-up visits, and adherence to treatment recommendations should be considered. Guidelines suggest that patients should be regularly checked for nutritional deficiencies including iron, vitamin D, copper, zinc, folate, and vitamin B12, in addition to being referred to a dietician at time of diagnosis. [
4,
8,
9]
Published studies analyzing CD progression are based in large academic settings [
6,
10‐
12]. There is little data on practice parameters and clinical outcomes for CD in a private practice, community-based setting [
13]. The aim of this retrospective study was to determine guideline adherence in terms of dietician referral and regular follow-up by gastroenterologists in a large private practice who take care of CD patients in the community, as opposed to a larger academic center.
Discussion
The principal finding of this study was that referral rates to a dietitian was much higher than expected. Providers at RGA ordered iron and Vitamin D studies at greater rates than hypothesized. Testing rates for iron studies were equal to the hypothesized value and Vitamin D studies were greater than hypothesized. However, order and testing rates were lower than the hypothesized values for copper, zinc, folate, and Vitamin B12. Rates of micronutrient deficiencies were low without an identifiable trend when comparing patients with or without a dietitian referral. However, rates of all micronutrient deficiencies declined over time in patients that had both an initial and follow-up value. These trends were most prominently seen for iron and Vitamin D studies, likely because of higher rates of testing (similar trend to results from Deora et al. [
15]).
Currently, guidelines set forth by American Gastroenterology Association (AGA) and the National Institute of Health (NIH) recommend periodic follow-up visits at regular time intervals with both a practicing physician and a nutritionist/dietitian [
6,
11]. In this study, follow-up visit rates at 3–6 months and beyond were greater than hypothesized. Time intervals between the initial diagnosis and subsequent follow-up visits (if any) were variable and may reflect other gastrointestinal comorbidities or unique circumstances for patients. Patients with a dietitian referral had lower rates of symptomatic disease in comparison to those without a referral. Additionally, patients with a referral had higher rates of negative serology (anti-tTG antibody) at follow-up in comparison to those without a referral.
Although the originally hypothesized number of patients was 320 based on initial polling from the EMR, only 126 met inclusion criteria for the study and the other 194 patient charts lacked significant data for inclusion in the analysis. The smaller number of subjects made it difficult to draw statistically significant conclusions. This discrepancy was emphasized due to an uneven percentage of subjects referred to a dietitian compared to those not referred (69.8% vs. 30.2%),
Other limitations of this study include the following: lack of controlling for other gastrointestinal comorbidities, lack of ability to track a follow-up visit with a dietitian, lack of ability to track patient follow-up with their primary care provider, lack of standardization of national guideline adherence in current practice at RGA, difficulty in standardizing data input procedure regarding patient visits (i.e. symptom data in HPI vs. ROS vs. assessment area, results data in progress notes vs. results section in EMR vs. outside uploaded document), lack of ability to track follow-up for patients diagnosed near the end of the set timeframe (closer to December 2018).
One discrepancy found during the analysis was the difference between micronutrient order rates and actual testing rates. There are several variables that affect these outcomes, many of which are difficult to control for. A future improvement in CD practice and patient outcomes may include artificial intelligence or a mobile application that tracks the variables analyzed in this study. These advances can help providers closely monitor patients in the outpatient setting by mitigating the communication setbacks in the current healthcare system. Providers can monitor dietitian follow-up appointments and GFD adherence with this technology, which may have similar improvement in quality of life and patient outcomes seen with other chronic diseases [
16‐
18].
Currently, most studies analyzing follow-up outcomes for patients with CD have been conducted at larger, academic centers [
6,
10‐
12]. Patients in this study, at a large, community-based gastroenterology practice, showed an improvement in symptomology, biopsy findings, serology findings, and micronutrient deficiencies between the initial visit and most recent follow-up visits. These identified trends, may be due to the strong dietitian referral rates and high rates of medical follow-up, and may highlight underlying themes of strong clinical practice including patient motivation, encouragement, and access to a support network. These are all factors that ultimately help patients with CD adhere appropriately to a GFD.
Although care providers at Rockford Gastroenterology Associates overall showed strong adherence to national guidelines for diagnosis and management of patients with CD, there exists a fair amount of variability in practice patterns. The gastroenterologists at RGA completed training at different, large academic centers at different points in time. Compounding this with differences in clinical judgement, some variability is expected. However, moving forward it is important to improve standardization of management guidelines for clinicians across the board. Further studies, like that conducted by Zanini et al. [
13] can help streamline the practice patterns at community based gastroenterology practices in line with academic centers [
6,
10‐
12]. The hope is to improve the overall quality of life for patients with CD by enhancing the comprehensive approach to medical management.
Conclusions
Registered dietitian referral, micronutrient testing, and close follow-up are important parameters that affect outcomes in patients with CD. In our study, the rates for dietitian referral, some micronutrient testing and follow-up visits were higher than 50%. Although not statistically significant, a greater percentage of patients with a dietitian referral were asymptomatic and/or had negative serology. Additionally, there was large variability in follow-up time intervals and micronutrient lab testing. Further standardization of follow-up and monitoring of CD patients will help minimize the variability between community-based GI practices and academic centers.
Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit
http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (
http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.