Top

Published in:

Open Access 01-12-2013 | Research

Health-related quality of life in children and adolescents with celiac disease: survey of a population from central Italy

Authors: Emma Altobelli, Riccardo Paduano, Teresa Gentile, Claudia Caloisi, Ciro Marziliano, Stefano Necozione, Ferdinando di Orio

Published in: Health and Quality of Life Outcomes | Issue 1/2013

Abstract

Background

Celiac Disease (CD) is an increasingly common autoimmune disorder. It requires a strict lifelong adherence to a gluten-free diet (GFD) which can influence health-related quality of life (HRQOL). This study assesses HRQOL in children and adolescents with CD and explores how several demographic and clinical characteristics and GFD adherence affect their perceived health status.

Methods

We recruited 140 consecutive children and adolescents with CD confirmed by small bowel biopsy. HRQOL was assessed using the SF-12 questionnaire plus some CD-specific questions exploring wellbeing and lifestyle. Patients, aged 10 to 18 years, were identified by pediatric gastroenterologists and guided in filling out the questionnaire by trained psychologists. Parametric or non-parametric tests were applied to analyze continuous variables and frequencies as appropriate.

Results

The SF-12 mean mental component summary score (MCS12) was lower than in the general Italian population (p < 0.001), whereas differences in terms of physical health were not significant (p = 0.220). More than one third of those interviewed reported feeling angry “always” or “most of the time” about having to follow the GFD, and nearly 20% reported feeling different from others and misunderstood because of CD “always” or “most of the time”.

Conclusions

Our findings highlight the need for health professionals to identify adolescents with major disease-related problems. The food industry should improve its range of gluten-free food products and public bodies and institutions should promote informative campaigns and help promote the overall quality of life of children and adolescents with CD.

Available only for authorised users

Husby S, Koletzko S, Korponay-Szabò 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(1):136–160.PubMedCrossRef

Gujral N, Freeman HJ, Thomson ABR: Celiac disease: prevalence, diagnosis, pathogenesis and treatment. World J Gastroenterol 2012,18(42):6036–6059.PubMedCentralPubMedCrossRef

Mustalahti K, Catassi C, Reunanen A, Fabiani E, Heier M, McMillan S, Murray L, Metzger MH, Gasparin M, Bravi E, Mäki M, Coeliac EU C, Project Epidemiology: The prevalence of celiac disease in Europe: results of a centralized, international mass screening project. Ann Med 2010, 42: 8. 587–95CrossRef

Hill ID, Dirks MH, Liptak GS, Colletti RB, Fasano A, Guandalini S, Hoffenberg EJ, Horvath K, Murray JA, Pivor M, Seidman EG: North American society for pediatric gastroenterology, hepatology and nutrition: guideline for the diagnosis and treatment of celiac disease in children: recommendations of the north American society for pediatric gastroenterology, hepatology and nutrition. J Pediatr Gastroenterol Nutr 2005, 40: 1–19.PubMedCrossRef

Hallert C, Grännö C, Hultén S, Midhagen G, Ström M, Svensson H, Valdimarsson T: Living with coeliac disease: controlled study of the burden of illness. Scand J Gastroenterol 2002, 37: 39–42.PubMedCrossRef

Roos S, Karner A, Hallert C: Psychological well-being of adult coeliac patients treated for 10 years. Dig Liver Dis 2006, 38: 177–180.PubMedCrossRef

Zarkadas M, Cranney A, Case S, Molloy M, Switzer C, Graham ID, Butzner JD, Rashid M, Warren RE, Burrows V: The impact of gluten-free diet on adults with coeliac disease: results of a national survey. J Hum Nutr Diet 2006, 19: 41–49.PubMedCrossRef

Green PHR, Stavropoulos SN, Panagi SG, Goldstein SL, Mcmahon DJ, Absan H, Neugut AI: Characteristics of adult coeliac disease in the USA: results of a national survey. Am J Gastroenterol 2001, 96: 126–131.PubMedCrossRef

Fera T, Cascio B, Angelini G, Martini S, Guidetti CS: Affective disorders and quality of life in adult coeliac disease patients on gluten-free diet. Eur J Gastroenterol Hepatol 2003, 15: 1287–1292.PubMedCrossRef

10.

Haüser W, Gold J, Stein J, Caspary WF, Stallmach A: Health-related quality of life in adult coeliac disease in Germany: results of a national survey. Eur J Gastroenterol Hepatol 2006, 18: 747–754.PubMedCrossRef

11.

O’Leary C, Wieneke P, Buckley S, O’Regan P, Cronin CC, Quigley EM, Shanahan F: Celiac disease and irritable bowel symptoms. Am J Gastroenterol 2002, 97: 1463–1467.PubMedCrossRef

12.

Troncone R, Ivarsson A, Szajewska H, Mearin ML: Members of the European multistakeeholder platform on CD (CDEUSSA): review article: future research on coeliac disease – a position report from the European multistakeholder platform on coeliac disease (CDEUSSA). Aliment Pharmacol Ther 2008,27(11):1030–1043.PubMedCrossRef

13.

Häuser W, Stallmach A, Caspary WF, Stein J: Predictors of reduced health-related quality of life in adults with coeliac disease. Aliment Pharmacol Ther 2007,25(5):569–578.PubMedCrossRef

14.

Casellas F, Rodrigo L, Vivarcos JL, Riestra S, Pantiga C, Baudet JS, Junquera F, Divi VP, Abadia C, Papo M, Gelabert J, Malagelada JR: Factors that impact health-related quality of life in adults with celiac disease: a multicenter study. World J Gastroenterol 2008,14(1):46–52.PubMedCentralPubMedCrossRef

15.

Kolsteren MM, Koopman HM, Schalekamp G, Mearin ML: Health-related quality of life in children with celiac disease. J Pediatr 2001,138(4):593–595.PubMedCrossRef

16.

Usai P, Minerba L, Marini B: Case control study on health-related quality of life in adult coeliac disease. Dig Liver Dis 2002, 34: 547–552.PubMedCrossRef

17.

Wagner G, Berger B, Sinnreich U, Grylli V, Schober E, Huber WD, Karwautz A: Quality of life in adolescents with treated coeliac disease: influence of compliance and age at diagnosis. J Pediatr Gastroenterol Nutr 2008,47(5):555–561.PubMedCrossRef

18.

Norström F, Lindholm L, Sandström O, Nordyke K, Ivarsson A: Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterol 2011, 11: 118.PubMedCentralPubMedCrossRef

19.

Aggarwal S, Lebwohl B, Green PHR: Screening for celiac disease in average-risk and high-risk populations. Ther Adv Gastroenterol 2012,5(1):37–47.CrossRef

20.

Rashid M, Cranney A, Zarkadas M, Graham ID, Switzer C, Case S, Molloy M, Warren RE, Burrows V, Butzner JD: Celiac disease: evaluation of the diagnosis and dietary compliance in Canadian children. Pediatrics 2005,116(6):e754-e759.PubMedCrossRef

21.

Apolone G, Mosconi P, Quattrociocchi L, Gianicolo EAL, Gorth N, Ware JE: Health status questionnaire SF-12 italian version. 2005 update. Milan: Istituto di Ricerche Farmacologiche Mario Negri; 2001.

22.

Walker-Smith J, Murch S: Coeliac disease. In Diseases of the small intestine in childhood: 4th ed. Edited by: Walker-Smith J, Murch S. Oxford, United Kingdom: Isis Medical Media Ltd; 1999:234–277.

23.

Mustalahti K, Sulkanen S, Holopainen P, Laurila K, Collin P, Partanen J, Mäki M: Coeliac disease among healthy members of multiple case coeliac disease families. Scand J Gastroenterol 2002,37(2):161–165.PubMedCrossRef

24.

Catassi C, Fabiani E, Ratsch IM, Coppa GV, Giorgi PL, Pierdomenico R, Alessandrini S, Iwanejko G, Domenici R, Mei E, Milano A, Marani M, Bottaro G, Spina M, Dotti M, Montanelli A, Barbato M, Viola F, Lazzari R, Vallini M, Guariso G, Plebani M, Cataldo F, Traverso G, Ventura A, et al.: The coeliac iceberg in Italy: a multicentre antigliadin antibodies screening for coeliac disease in school-age subjects. Acta Paediatr Suppl 1996, 412: 29–35.PubMedCrossRef

25.

Ljungman G, Myrdal U: Compliance in teenagers with coeliac disease: a Swedish follow-up study. Acta Paediatr 1993,82(3):235–238.PubMedCrossRef

26.

Ciacci C, D’Agate C, DeRosa A, Franzese C, Errichiello S, Gasperi V, Pardi A, Quagliata D, Visentini S, Greco L: Self rated quality of life in celiac disease. Dig Dis Sci 2003,48(11):2216–2220.PubMedCrossRef

27.

Black JL, Orfilia C: Impact of celiac disease on dietary habits and quality of life. J Hum Diet 2011,24(6):582–587.CrossRef

28.

Lee AR, Ng DL, Diamond B, Ciaccio EJ, Green PHR: Living with coeliac disease: survey results from the USA. J Hum Nutr Diet 2012, 25: 233–238.PubMedCrossRef

29.

van Koppen EJ, Schweizer JJ, Csizmadia CGDS, Krom Y, Hylkema HB, van Geel AM, Koopman HM, Verloove-Vanhorick SP, Mearin ML: Long-term health and quality-of-life consequences of mass screening for childhood celiac disease: a 10-year follow-up study. Pediatrics 2009, 123: e582-e588.PubMedCrossRef

30.

Rosen A, Ivarsson A, Nordyke K, Karlsson E, Carlsson A, Danielsson L, Högberg L, Emmelin M: Balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents’ quality of life. BMC Pediatr 2011, 11: 32.PubMedCentralPubMedCrossRef

31.

Nordike K, Norström F, Lindholm L, Stenlund H, Rosén A, Ivarsson A: Health-related quality of life in adolescents with screening-detected celiac disease, before and one year after diagnosis and initiation of gluten-free diet, a prospective nested case-referent study. BMC Public Health 2013, 13: 142.CrossRef

32.

Catassi C, Cobellis G: Celiac disease epidemiology is alive and kicking, especially in the developing world. Dig Liver Dis 2007,39(10):908–910.PubMedCrossRef

Title: Health-related quality of life in children and adolescents with celiac disease: survey of a population from central Italy
Authors: Emma Altobelli
Riccardo Paduano
Teresa Gentile
Claudia Caloisi
Ciro Marziliano
Stefano Necozione
Ferdinando di Orio
Publication date: 01-12-2013
Publisher: BioMed Central
Published in: Health and Quality of Life Outcomes / Issue 1/2013
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/1477-7525-11-204

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Health-related quality of life in children and adolescents with celiac disease: survey of a population from central Italy

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2013

Quality of life in women undergoing urinary diversion for bladder cancer: results of a multicenter study among long-term disease-free survivors

Attitudes to aging mediate the relationship between older peoples’ subjective health and quality of life in 20 countries

Cross-cultural adaptation and validation of a Brazilian version of an instrument to assess impairments related to oral functioning of people with Down syndrome

Use of pedometer-driven walking to promote physical activity and improve health-related quality of life among meat processing workers: a feasibility trial

What is the optimal time point to assess patient-reported recovery after hip and knee replacement? a systematic review and analysis of routinely reported outcome data from the English patient-reported outcome measures programme

Erratum to: systematic review: do patient expectations influence treatment outcomes in total knee and total hip arthroplasty?