Barriers impeding serologic screening for celiac disease in clinically high-prevalence populations

BMC Gastroenterology

Martin F Kagnoff³  Michael C Donohue⁴  Shawna L McNally¹  Erika M Barbero² 

[1] Current Address: Nutrition Research Consultant, Harvard Center for Population and Development Studies, Providence, RI, USA;Department of Medicine, Division of Gastroenterology, University of California San Diego, 9500 Gilman Drive, La Jolla, CA 92093 MC 0623D, USA;Department of Pediatrics, Division of Gastroenterology, University of California San Diego, La Jolla, CA, USA;Department of Family and Preventive Medicine, Division of Biostatistics and Bioinformatics, University of California San Diego, La Jolla, CA, USA

关键词: Barriers to screening;    Serologic screening;    Celiac disease;   

Others  :  855683
DOI  :  10.1186/1471-230X-14-42

 received in 2013-11-24, accepted in 2014-02-28,  发布年份 2014

【 摘 要 】

Background

Celiac disease is present in ~1% of the general population in the United States and Europe. Despite the availability of inexpensive serologic screening tests, ~85% of individuals with celiac disease remain undiagnosed and there is an average delay in diagnosis of symptomatic individuals with celiac disease that ranges from ~5.8-11 years. This delay is often attributed to the use of a case-based approach for detection rather than general population screening for celiac disease, and deficiencies at the level of health care professionals. This study aimed to assess if patient-centered barriers have a role in impeding serologic screening for celiac disease in individuals from populations that are clinically at an increased risk for celiac disease.

Methods

119 adults meeting study inclusion criteria for being at a higher risk for celiac disease were recruited from the general population. Participants completed a survey/questionnaire at the William K. Warren Medical Research Center for Celiac Disease that addressed demographic information, celiac disease related symptoms (gastrointestinal and extraintestinal), family history, co-morbid diseases and conditions associated with celiac disease, and patient-centered barriers to screening for celiac disease. All participants underwent serologic screening for celiac disease using the IgA tissue transglutaminase antibody (IgA tTG) and, if positive, testing for IgA anti-endomysial antibody (IgA EMA) as a confirmatory test.

Results

Two barriers to serologic testing were significant across the participant pool. These were participants not knowing they were at risk for celiac disease before learning of the study, and participants not knowing where to get tested for celiac disease. Among participants with incomes less than $25,000/year and those less than the median age, not having a doctor to order the test was a significant barrier, and this strongly correlated with not having health insurance. Symptoms and co-morbid conditions were similar among those whose IgA tTG were negative and those who tested positive.

Conclusion

There are significant patient-centered barriers that impede serologic screening and contribute to the delayed detection and diagnosis of celiac disease. These barriers may be lessened by greater education of the public and health care professionals about celiac disease symptoms, risk factors, and serologic testing.

【 授权许可】

   
2014 Barbero et al.; licensee BioMed Central Ltd.

【 图 表 】

【 参考文献 】

• [1]Mustalahti K, Catassi C, Reunanen A, Fabiani E, Heier M, McMillan S, Murray L, Metzger MH, Gasparin M, Bravi E, Mäki M, Coeliac EU Cluster, Project Epidemiology: The prevalence of celiac disease in Europe: results of a centralized, international mass screening project. Ann Med 2010, 42:587-595.
• [2]Alarida K, Harown J, Ahmaida A, Marinelli L, Venturini C, Kodermaz G, Tozzoli R, Mandolesi A, Bearzi I, Catassi C: Coeliac disease in Libyan children: a screening study based on the rapid determination of anti-transglutaminase antibodies. Dig Liver Dis 2011, 43:688-691.
• [3]Cummins AG, Roberts-Thomson IC: Prevalence of celiac disease in the Asia-Pacific region. J Gastroenterol Hepatol 2009, 24:1347-1351.
• [4]Kagnoff MF: Celiac disease: pathogenesis of a model immunogenetic disease. J Clin Invest 2007, 117:41-49.
• [5]Reilly NR, Green PH: Epidemiology and clinical presentations of celiac disease. Semin Immunopathol 2012, 34:473-478.
• [6]Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K: Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Arch Intern Med 2003, 163:286-292.
• [7]Book L, Zone JJ, Neuhausen SL: Prevalence of celiac disease among relatives of sib pairs with celiac disease in U.S. families. Am J Gastroenterol 2003, 98:377-381.
• [8]Rostom A, Murray JA, Kagnoff MF: American Gastroenterological Association (AGA) Institute technical review on the diagnosis and management of celiac disease. Gastroenterology 2006, 131:1981-2002.
• [9]Aggarwal S, Lebwohl B, Green PH: Screening for celiac disease in average-risk and high-risk populations. Therap Adv Gastroenterol 2012, 5:37-47.
• [10]Rivera E, Assiri A, Guandalini S: Celiac disease. Oral Dis 2013, 19:635-641.
• [11]Pellecchia MT, Scalia R, Filla A, De Michele G, Ciacci C, Barone P: Idiopathic cerebellar ataxia associated with celiac disease: lack of distinctive neurological features. J Neurol Neurosurg Psychiatry 1999, 66:32-35.
• [12]Cranney A, Zarkadas M, Graham ID, Butzner JD, Rashid M, Warren R, Molloy M, Case S, Burrows V, Switzer C: The Canadian celiac health survey. Dig Dis Sci 2007, 52:1087-1095.
• [13]Cash BD, Rubenstein JH, Young PE, Gentry A, Nojkov B, Lee D, Andrews AH, Dobhan R, Chey WD: The prevalence of celiac disease among patients with nonconstipated irritable bowel syndrome is similar to controls. Gastroenterology 2011, 141:1187-1193.
• [14]Zintzaras E, Germenis AE: Performance of antibodies against tissue transglutaminase for the diagnosis of celiac disease: meta-analysis. Clin Vaccine Immunol 2006, 13:187-192.
• [15]Institute AGA: AGA Institute medical position statement on the diagnosis and management of celiac disease. Gastroenterology 2006, 131:1977-1980.
• [16]Husby S, Koletzko S, Korponay-Szabó IR, Mearin ML, Phillips A, Shamir R, Troncone R, Giersiepen K, Branski D, Catassi C, Lelgeman M, Mäki M, Ribes-Koninckx C, Ventura A, Zimmer KP, ESPGHAN Working Group on Coeliac Disease Diagnosis; ESPGHAN Gastroenterology Committee; European Society for Pediatric Gastroenterology, Hepatology, and Nutrition: European society for pediatric gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. J Pediatr Gastroenterol Nutr 2012, 54:136-160.
• [17]Rubio-Tapia A, Hill ID, Kelly CP, Calderwood AH, Murray JA, American College of Gastroenterology: ACG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol 2013, 108:656-676.
• [18]Elson CO, Ballew M, Barnard JA, Bernstein SJ, Check IJ, Cohen MB, Fazio S, Johanson JF, Lindor NM, Montgomery E, Richardson LH, Rogers D, Vijan S: National institutes of health consensus development conference statement on celiac disease consensus. In Proceedings of the NIH Consensus Conference on Celiac Disease 28–30 June 2004; Gastroenterology 2005, 128(suppl 1):S1-S9.
• [19]Green PHR, Stavropoulos SN, Panagi SG, Goldstein SL, McMahon DJ, Absan H, Neugut AI: Characteristics of adult celiac disease in the USA: results of a national survey. Am J Gastroenterol 2001, 96:126-131.
• [20]Norstrom F, Lindholm L, Sandstrom O, Nordyke K, Ivarsson A: Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterol 2011, 11:118. BioMed Central Full Text
• [21]Rubio-Tapia A, Rahm MW, See JA, Lahr BD, Wu TT, Murray JA: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet. Am J Gastroenterol 2010, 105:1412-1420.
• [22]Lohi S, Maki M, Rissanen H, Knekt P, Reunanen A, Kaukinen K: Prognosis of unrecognized coeliac disease as regards mortality: a population-based cohort study. Ann Med 2009, 41:508-515.
• [23]Rubio-Tapia A, Kyle RA, Kaplan EL, Johnson DR, Page W, Erdtmann F, Brantner TL, Kim WR, Phelps TK, Lahr BD, Zinsmeister AR, Melton J, Murray JA: Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology 2009, 137:88-93.
• [24]Rubio-Tapia A, Ludvigsson JF, Brantner TL, Murray JA, Everhart JE: The prevalence of celiac disease in the United States. Am J Gastroenterol 2012, 107:1538-1544.
• [25]Lo W, Sano K, Lebwohl B, Diamond B, Green PH: Changing presentation of adult celiac disease. Dig Dis Sci 2003, 48:395-398.
• [26]Metzger MH, Heier M, Maki M, Bravi E, Schneider A, Lowel H, Illig T, Schuppan D, Wichmann HE: Mortality excess in individuals with elevated IgA anti-transglutaminase antibodies: the KORA/MONICA Augsburg cohort study 1989–1998. Eur J Epidemiol 2006, 21:359-365.
• [27]Dickey W, McConnell JB: How many hospital visits does it take before celiac sprue is diagnosed? J Clin Gastroenterol 1996, 23:21-23.
• [28]Davison AC, Hinkley DV: Bootstrap Methods and their Application. Cambridge, UK: Cambridge University Press; 1997.
• [29]Ciacci C, Cirillo M, Sollazzo R, Savino G, Sabbatini F, Mazzacca G: Gender and clinical presentation in adult celiac disease. Scand J Gastroenterol 1995, 30:1077-1081.
• [30]Green PH, Cellier C: Celiac disease. N Engl J Med 2007, 357:1731-1743.
• [31]Rostom A, Dube C, Cranney A, Saloojee N, Sy R, Garritty C, Sampson M, Zhang L, Yazdi F, Mamaladze V, Pan I, MacNeil J, Mack D, Patel D, Moher D: The diagnostic accuracy of serologic tests for celiac disease: a systematic review. Gastroenterology 2005, 128(Suppl 1):S38-S46.
• [32]Leffler DA, Schuppan D: Update on serologic testing in celiac disease. Am J Gastroenterol 2010, 105:2520-2524.
• [33]Zipser RD, Farid M, Baisch D, Patel B, Patel D: Physician awareness of celiac disease: a need for further education. J Gen Intern Med 2005, 20:644-646.
• [34]Celiac Disease Awareness Campaign http://celiac.nih.gov webcite
• [35]Lundin KE, Alaedini A: Non-celiac gluten sensitivity. Gastrointest Endosc Clin N Am 2012, 22:723-734.
• [36]Sapone A, Bai JC, Ciacci C, Dolinsek J, Green PH, Hadjivassiliou M, Kaukinen K, Rostami K, Sanders DS, Schumann M, Ullrich R, Villalta D, Volta U, Catassi C, Fasano A: Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Med 2012, 10:13. BioMed Central Full Text
• [37]Catassi C, Kryszak D, Louis-Jacques O, Duerksen DR, Hill I, Crowe SE, Brown AR, Procaccini NJ, Wonderly BA, Hartley P, Moreci J, Bennett N, Horvath K, Burk M, Fasano A: Detection of Celiac disease in primary care: a multicenter case-finding study in North America. Am J Gastroenterol 2007, 102:1454-1460.
• [38]U.S. Census Bureau: State and County QuickFacts. http://quickfacts.census.gov/qfd/states/06/06073.html webcite