Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members
Abstract
Aim: Screening first-degree relatives of celiac disease (CD) patients offers an opportunity to diagnose CD in a high-risk population. This study aims to determine how frequently CD patients receive a physician-issued recommendation for first-degree relative screening.
Materials and Methods: A 12-question survey assessing whether CD patients receive a physician recommendation to screen first-degree relatives for CD, and the impact of such a recommendation, was validated with outpatients in a university gastroenterology practice (“University”). The 12-question survey was then distributed online to members of a celiac organization - the National Foundation for Celiac Awareness (“NFCA”). Results were collected over 3 months. Univariate analysis was used to compare cohort means and assess the association between demographic and diagnostic factors and first-degree relative screening recommendations.
Results: 87 University patients participated in the validation phase. Test-retest reliability of 4 key survey questions was high (Kappa coefficient >0.80). The main analyses were based on data from 677 NFCA and 82 University respondents. Respondents were predominantly female, with a mean age of 45 years. Significantly more University patients received a recommendation for screening (78% vs. 44%, p < 0.001). Ninety-eight percent receiving a screening recommendation (both groups) discussed this with family members, leading to CD screening (University 71%, NFCA 79%) and, ultimately, a CD diagnosis (University 18%, NFCA 27%).
Conclusions: Physicians of CD patients often do not recommend screening first-degree family members. The high clinical impact of this recommendation suggests that greater physician compliance with screening may increase the diagnosis of CD in high risk individuals.
Keywords
References
Green P, Cellier C. Celiac disease. New England Journal of Medicine 2007;357:1731–1743.
Ludvigsson J, Rubio-Tapia A, van Dyke C, Melton LJ 3rd, Zinsmeister AR, Lahr BD, et al. Increasing incidence of celiac disease in a North American population. American Journal of Gastroenterology 2013;108:818-824.
Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Archives of Internal Medicine 2003;163:286–292.
Esteve M, Rosinach M, Fernandez-Banares F, Farré C, Salas A, Alsina M, et al. Spectrum of gluten-sensitive enteropathy in first-degree relatives of patients with coeliac disease: clinical relevance of lymphocytic enteritis. Gut 2006;55:1739-45.
Rubio-Tapia A, Van Dyke CT, Lahr BD, Zinsmeister AR, El-Youssef M, Moore SB et al. Predictors of family risk for celiac disease: a population-based study. Clinical Gastroenterology and Hepatology 2008;6:983-987.
Book L, Zone J, Neuhausen SL. Prevalence of celiac disease among relatives of sib pairs with celiac disease in U.S. families. American Journal of Gastroenterology 2003;98:377-381.
Kagnoff, M. AGA Institute Medical Position Statement on the Diagnosis and Management of Celiac Disease. Gastroenterology 2006;131:1977-1980.
National Institute for Health and Clinical Excellence (NICE). Coeliac disease: Recognition and assessment of coeliac disease. London: National Institute for Health and Clinical Excellence; 2009. 86 p.
World Gastroenterology Organisation (WGO-OMGE). WGO-OMGE practice guideline: celiac disease. Paris: World Gastroenterology Organisation; 2007. 18 p.
Hill I, Dirks M, Liptak G, Colletti RB, Fasano A, Guandalini S, et al. Guideline for the diagnosis and treatment of celiac disease in children: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Journal of Pediatric Gastroenterology and Nutrition 2005;40:1–19.
Husby S, Koletzko S, Korponay-Szabo I, Mearin ML, Phillips A, Shamir R, et al. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. Journal of Pediatric Gastroenterology and Nutrition 2012;54:136-160.
Green P, Stavropoulos S, Panagi S, Goldstein SL, Mcmahon DJ, Absan H, et al. Characteristics of adult celiac disease in the USA: results of a national survey. American Journal of Gastroenterology 2001;96:126–131.
Davidson A, Hassall E. Screening for celiac disease. CMAJ 1997;157:547–548.
Rubio-Tapia A, Kyle R, Kaplan E, Johnson DR, Page W, Erdtmann F, et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology 2009;137:88–93.
Hin H, Bird G, Fisher P, Mahy N, Jewell D. Coeliac Disease in primary care: case finding study. BMJ 1999;318:164–167.
Parakkal D, Du H, Semer R, Ehrenpreis ED, Guandalini S. Do gastroenterologists adhere to diagnostic and treatment guidelines for celiac disease? Journal of Clinical Gastroenterology 2012;46:12-20.
Barker J, Liu E. Celiac disease: pathophysiology, clinical manifestations, and associated autoimmune conditions. Advances in Pediatrics 2008;55:349-365.
Landis, J, Koch, G. The measurement of observer agreement for categorical data. Biometrics 1977;33:159–174.
Fleiss, J. Statistical methods for rates and proportions (2nd edition). New York: John Wiley, 1981.
Mustalahti K, Catassi C, Reunanen A, Fabiani E, Heier M, McMillan S, et al. The prevalence of celiac disease in Europe: results of a centralized, international mass screening project. Annals of Medicine 2010;42:587-595.
Weirdsma N, van Bokhorst-de van der Schueren MA, Berkenpas M, Mulder CJ, van Bodegraven AA. Vitamin and mineral deficiencies are highly prevalent in newly diagnosed celiac disease patients. Nutrients 2013;5:3975-3992.
Ludvigsson J, Montgomery S, Ekbom, A. Celiac disease and risk of adverse fetal outcome: a population based cohort study. Gastroenterology 2005;129:454-463.
Khashan A, Henriksen T, Mortensen P, McNamee R, McCarthy FP, Pedersen MG. The impact of maternal celiac disease on birthweight and preterm birth: a Danish population-based cohort study. Human Reproduction 2010;25:528-534.
Cosnes J, Cellier C, Viola S, Colombel JF, Michaud L, Sarles J, et al. Incidence of autoimmune diseases in celiac disease: protective effect of the gluten-free diet. Clinical Gastroenterology and Hepatology 2008;6:753–758.
Lebwohl B, Granath F, Ekbom A, Smedby KE, Murray JA, Neugut AI, et al. Mucosal Healing and Risk for Lymphoproliferative Malignancy in Celiac Disease: A Population-Based Cohort Study. Annals of Internal Medicine 2013;159:169-175.
Ventura A, Neri E, Ughi C, Leopaldi A, Città A, Not T. Gluten-dependent diabetes-related and thyroid-related autoantibodies in patients with celiac disease. Journal of Pediatrics 2010;137:263–265.
Green P, Fleischauer A, Bhagat G, Goyal R, Jabri B, Neugut AI. Risk of malignancy in patients with celiac disease. American Journal of Medicine 2003;115:191–195.
Megiorni F, Mora B, Bonamico M, Barbato M, Montuori M, Viola F, et al. HLA-DQ and susceptibility to celiac disease: evidence for gender differences and patient-of-origin effects. American Journal of Gastroenterology 2008;103:997-1003.
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