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Quality of Life in Celiac Disease

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Advances in Celiac Disease

Abstract

Celiac disease (CD) is a systemic immune disorder whose only treatment is a gluten-free diet (GFD). Its chronic nature, together with the restrictions imposed by the restrictive and permanent diet, can have a considerable negative impact on the health-related quality of life (HRQoL) of CD patients and their families. To objectively assess HRQoL, validated questionnaires should be used. In this chapter, studies performed using validated generic and specific questionnaires have been reviewed. Most studies show that before starting the GFD, recently diagnosed children and adult CD patients have a worse HRQoL than the general population, although, after one year of treatment with a GFD, their HRQoL is similar to that of the general population. However, adults’ HRQoL is not completely normalized, probably due to the social and emotional effects of following a strict diet. Children score their general HRQoL as “good” when it is assessed with different generic questionnaires and the specific CDPQOL, whereas they consider as “neutral” when it is assessed using the specific CDDUX. When children’s and parents’ opinion are assessed, in general parents evaluate their children´s HRQoL worse than the children themselves. As a result, in the opinion of most authors, it is interesting to assess both point of views. In children and adults, the main factors related to having a worse HRQoL are dietary non-adherence and having social and/or economic difficulties, related to following the GFD. In summary, adult celiac patients and both, celiac children and their parents, feel that the disease have no substantial negative impacts on patients’ HRQOL.

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Abbreviations

CD:

Celiac disease

GFD:

Gluten -free diet

HRQoL:

Health Related Quality of Life

QoL:

Quality of Life

WHO:

World Health Organization

SF-36:

Short Form 36-Item Health Survey

EuroQoL-5D (EQ_5D):

European Quality of Life-5 Dimensions visual analogic scale

PGWB:

Psychological General well-being Index

CDQ:

Celiac Disease Questionnaire

CD_QOL:

Celiac Quality of Life Survey

PedsQL:

Paediatric Quality of Life Inventory

KIDSCREEN-52:

Generic KIDSCREEN questionnaire which consists of 52 items

DISABKIDS:

Quality Of Life generic questionnaire to evaluate HRQoL in children and adolescents with DISABilities and their families

CDDUX:

Celiac Disease DUX

CDPQOL:

Celiac Disease Paediatric Quality of life

SF-12:

Short-Form 12-Item Health Survey

References

  1. Husby S, Koletzko S, Korponay-Szabó IR, Mearin ML, Phillips A, Shamir R, et al. European Society for pediatric gastroenterology, hepatology, and nutrition guidelines for the diagnosis of coeliac disease. J Pediatr Gastroenterol Nutr. 2012;54:136–60. https://doi.org/10.1097/MPG.0b013e31821a23d0.

    Article  PubMed  CAS  Google Scholar 

  2. Burger JPW, de Brouwer B, IntHout J, Wahab PJ, Tummers M, Drenth JPH. Systematic review with meta-analysis: dietary adherence influences normalization of health-related quality of life in coeliac disease. Clin Nutr. 2017;36:399–406. https://doi.org/10.1016/j.clnu.2016.04.021.

    Article  PubMed  Google Scholar 

  3. Biagetti C, Gesuita R, Gatti S, Catassi C. Quality of life in children with celiac disease: a paediatric cross-sectional study. Dig Liver Dis. 2015;47:927–32. https://doi.org/10.1016/j.dld.2015.07.009.

    Article  PubMed  Google Scholar 

  4. Jordan NE, Li Y, Magrini D, Simpson S, Reilly NR, DeFelice AR, et al. Development and validation of a celiac disease quality of life instrument for North American children. J Pediatr Gastroenterol Nutr. 2013;57:477–86. https://doi.org/10.1097/MPG.0b013e31829b68a1.

    Article  PubMed  Google Scholar 

  5. - Division of Mental Health and Prevention of Substance Abuse. WHOQOL user manual. Geneva: World Health Organization;1998.

    Google Scholar 

  6. Seid M, Varni JW, Jacobs JR. Pediatric health-related quality-of-life measurement technology: intersections between science, managed care, and clinical care. J Clin Psychol Med Settings. 2000;7:17–27. https://doi.org/10.1023/A:1009541218764.

    Article  Google Scholar 

  7. Hand C. Measuring health-related quality of life in adults with chronic conditions in primary care settings: critical review of concepts and 3 tools. Can Fam Physician. 2016;62:e375–83.

    PubMed Central  Google Scholar 

  8. Higginson IJ. Measuring quality of life: using quality of life measures in the clinical setting. BMJ. 2001;322:1297–300. https://doi.org/10.1136/bmj.322.7297.1297.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  9. Briançon S, Gergonne B, Guillemin F, Empereur F, Klein S. Disease-specific versus generic measurement of health-related quality of life in cross-sectional and longitudinal studies: an inpatient investigation of the sf-36 and four disease-specific instruments. In: Mesbah M, Cole BF, Lee M-LT, editors. Statistical methods for quality of life studies. Boston, MA: Springer US;2002. p. 87–99. https://doi.org/10.1007/978-1-4757-3625-0_8.

  10. Stevens K, Palfreyman S. The use of qualitative methods in developing the descriptive systems of preference-based measures of health-related quality of life for use in economic evaluation. Value Health. 2012;15:991–8. https://doi.org/10.1016/j.jval.2012.08.2204.

    Article  PubMed  Google Scholar 

  11. Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10:347–57. https://doi.org/10.1023/a:1012253723272.

    Article  PubMed  CAS  Google Scholar 

  12. Theunissen NCM, Vogels TGC, Koopman HM, Verrips GHW, Zwinderman KAH, Verloove-Vanhorick SP, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res. 1998;7:387–97. https://doi.org/10.1023/a:1008801802877.

    Article  PubMed  CAS  Google Scholar 

  13. Vance YH, Morse RC, Jenney ME, Eiser C. Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health. J Child Psychol Psychiatry. 2001;42:661–7.

    Article  CAS  Google Scholar 

  14. Addington-Hall J. Measuring quality of life: Who should measure quality of life? BMJ. 2001;322:1417–20. https://doi.org/10.1136/bmj.322.7299.1417.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  15. van Doorn RK, Winkler LM, Zwinderman KH, Mearin ML, Koopman HM. CDDUX: a disease-specific health-related quality-of-life questionnaire for children with celiac disease. J Pediatr Gastroenterol Nutr. 2008;47:147–52. https://doi.org/10.1097/MPG.0b013e31815ef87d.

    Article  PubMed  Google Scholar 

  16. Germain N, Aballéa S, Toumi M. Measuring health-related quality of life in young children: how far have we come? J Mark Access Health Policy. 2019;7:1618661. https://doi.org/10.1080/20016689.2019.1618661.

    Article  PubMed  PubMed Central  Google Scholar 

  17. -MAPI Research Institute. PedsQL linguistic validation guidelines. Lyon: Mapi Research Institute;2006.

    Google Scholar 

  18. Tontini GE, Rondonotti E, Saladino V, Saibeni S, de Franchis R, Vecchi M. Impact of gluten withdrawal on health-related quality of life in celiac subjects: an observational case-control study. Digestion. 2010;82:221–8. https://doi.org/10.1159/000265549.

    Article  PubMed  Google Scholar 

  19. Casellas Jordá J, López Vivancos J. Fatigue as a determinant of health in patients with celiac disease. J Clin Gastroenterol. 2010;44:423–7.https://doi.org/10.1097/MCG.0b013e3181c41d12.

  20. Dupuy HJ. The psychological general well-being (PGWB) index. In: Wenger NK, Mattson ME, Furberg CF, Elinson J, editors. Assessment of quality of life in clinical trials of cardiovascular therapies. New York: Le Jacq Publishing; 1984. p. 170–83.

    Google Scholar 

  21. Häuser W, Gold J, Stallmach A, Caspary WF, Stein J. Development and validation of the Celiac Disease Questionnaire (CDQ), a disease-specific health-related quality of life measure for adult patients with celiac disease. J Clin Gastroenterol. 2007;41:157–66. https://doi.org/10.1097/01.mcg.0000225516.05666.4e.

    Article  PubMed  Google Scholar 

  22. Dorn SD, Hernandez L, Minaya MT, Morris CB, Hu Y, Leserman J, et al. The development and validation of a new coeliac disease quality of life survey (CD-QOL). Aliment Pharmacol Ther. 2010;31:666–75. https://doi.org/10.1111/j.1365-2036.2009.04220.x.

    Article  PubMed  CAS  Google Scholar 

  23. Marchese A, Klersy C, Biagi F, Balduzzi D, Bianchi PI, Trotta L, et al. Quality of life in coeliac patients: Italian validation of a coeliac questionnaire. Eur J Intern Med. 2013;24:87–91. https://doi.org/10.1016/j.ejim.2012.09.015.

    Article  PubMed  Google Scholar 

  24. Pouchot J, Despujol C, Malamut G, Ecosse E, Coste J, Cellier C. Validation of a French version of the quality of life “Celiac Disease Questionnaire”. In: Assassi S, editor. PLoS ONE. 2014;9:e96346. https://doi.org/10.1371/journal.pone.0096346.

  25. Casellas F, Rodrigo L, Molina-Infante J, Vivas S, Lucendo AJ, Rosinach M, et al. Transcultural adaptation and validation of the Celiac Disease Quality of Life (CD-QOL) survey, a specific questionnaire to measure quality of life in patients with celiac disease. Rev Esp Enfermedades Dig. 2013;105:585–93. https://doi.org/10.4321/s1130-01082013001000003.

    Article  Google Scholar 

  26. Zingone F, Iavarone A, Tortora R, Imperatore N, Pellegrini L, Russo T, et al. The Italian translation of the celiac disease-specific quality of life scale in celiac patients on gluten free diet. Dig Liver Dis. 2013;45:115–8. https://doi.org/10.1016/j.dld.2012.10.018.

    Article  PubMed  Google Scholar 

  27. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126–39. https://doi.org/10.1097/00005650-199902000-00003.

    Article  PubMed  CAS  Google Scholar 

  28. Fidan T, Ertekin V, Karabağ K. Depression-anxiety levels and the quality of life among children and adolescents with coeliac disease. Dusunen Adam J Psychiatry Neurol Sci. 2013; 232–8. https://doi.org/10.5350/DAJPN2013260301.

  29. Talebi S, Jafari SA, Kianifar H, Moharreri F, Mostafavi N. Quality of life in children with celiac disease: a cross-sectional study. Int J Pediatr. 2017;5:5339–49. https://doi.org/10.22038/ijp.2017.23860.2017.

    Article  Google Scholar 

  30. Sevinç E, Çetin FH, Coşkun BD. Psychopathology, quality of life, and related factors in children with celiac disease. J Pediatr (Rio J).2017;93:267–73. https://doi.org/10.1016/j.jped.2016.06.012.

  31. Stojanović B, Kočović A, Radlović N, Leković Z, Prokić D, Đonović N, et al. Assessment of quality of life, anxiety and depressive symptoms in serbian children with celiac disease and their parents. Indian J Pediatr. 2019;86:427–32. https://doi.org/10.1007/s12098-018-2836-4.

    Article  PubMed  Google Scholar 

  32. Kara A, Demirci E, Ozmen S. Evaluation of psychopathology and quality of life in children with celiac disease and their parents. Gazi Med J. 2019;30. https://doi.org/10.12996/gmj.2019.11.

  33. Shull MH, Ediger TR, Hill ID, Schroedl RL. Health-related quality of life in newly diagnosed pediatric patients with celiac disease. J Pediatr Gastroenterol Nutr. 2019;69:690–5. https://doi.org/10.1097/MPG.0000000000002465.

    Article  PubMed  Google Scholar 

  34. Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: Reliability and validity of the pediatric quality of life InventoryTM Version 4.0 generic core scales in healthy and patient populations: med care. 2001;39:800–12. https://doi.org/10.1097/00005650-200108000-00006.

  35. Myléus A, Petersen S, Carlsson A, Hammarroth S, Högberg L, Ivarsson A. Health-related quality of life is not impaired in children with undetected as well as diagnosed celiac disease: a large population based cross-sectional study. BMC Public Health. 2014;14:425. https://doi.org/10.1186/1471-2458-14-425.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Barrio J, Cilleruelo ML, Román E, Fernández C. Health-related quality of life in Spanish coeliac children using the generic KIDSCREEN-52 questionnaire. Eur J Pediatr. 2018;177:1515–22. https://doi.org/10.1007/s00431-018-3204-0.

    Article  PubMed  Google Scholar 

  37. Byström I-M, Hollén E, Fälth-Magnusson K, Johansson A. Health-related quality of life in children and adolescents with celiac disease: from the perspectives of children and parents. Gastroenterol Res Pract. 2012;2012:–6. https://doi.org/10.1155/2012/986475.

  38. Nikniaz Z, Abbasalizad Farhangi M, Nikniaz L. Systematic review with meta-analysis of the health-related quality of life in children with celiac disease. J Pediatr Gastroenterol Nutr. 2020;70:468–77.https://doi.org/10.1097/MPG.0000000000002604.

  39. Pico M, Spirito MF, Roizen M. [Quality of life in children and adolescents with celiac disease: argentinian version of the specific questionnaire CDDUX. Acta Gastroenterol Latinoam. 2012;42:12–9.

    PubMed  Google Scholar 

  40. Lins MTC, Tassitano RM, Brandt KG, Antunes MM de C, Silva GAP da. Translation, cultural adaptation, and validation of the celiac disease DUX (CDDUX). J Pediatr (Rio J). 2015;91:448–54. https://doi.org/10.1016/j.jped.2014.11.005.

  41. Taghdir M, Honar N, Mazloomi SM, Sepandi M, Ashourpour M, Salehi M. Dietary compliance in Iranian children and adolescents with celiac disease. J Multidiscip Healthc. 2016;9:365–70. https://doi.org/10.2147/JMDH.S110605.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Rojas M, Oyarzún A, Ayala J, Araya M. Health related quality of life in celiac children and adolescents. Rev Chil Pediatr. 2019;90:632–41. https://doi.org/10.32641/rchped.v90i6.1126.

    Article  PubMed  Google Scholar 

  43. Meyer S, Rosenblum S. Children with celiac disease: health-related quality of life and leisure participation. Am J Occup Ther. 2016;70:7006220010 p1–7006220010p8. https://doi.org/10.5014/ajot.2016.020594.

  44. Barrio J, Román E, Cilleruelo M, Márquez M, Mearin M, Fernández C. Health-related quality of life in spanish children with coeliac disease. J Pediatr Gastroenterol Nutr. 2016;62:603–8. https://doi.org/10.1097/MPG.0000000000000963.

    Article  PubMed  Google Scholar 

  45. Deepak C, Berry N, Vaiphei K, Dhaka N, Sinha SK, Kochhar R. Quality of life in celiac disease and the effect of gluten-free diet: Quality of life in celiac disease. JGH Open. 2018;2:124–8. https://doi.org/10.1002/jgh3.12056.

    Article  Google Scholar 

  46. Rodríguez Almagro J, Hernández Martínez A, Lucendo AJ, Casellas F, Solano Ruiz MC, Siles González J. Health-related quality of life and determinant factors in celiac disease. A population-based analysis of adult patients in Spain. Rev Esp Enfermedades Dig. 2016;108. https://doi.org/10.17235/reed.2016.4094/2015.

  47. Leinonen H, Kivelä L, Lähdeaho M-L, Huhtala H, Kaukinen K, Kurppa K. Daily life restrictions are common and associated with health concerns and dietary challenges in adult celiac disease patients diagnosed in childhood. Nutrients. 2019;11:1718. https://doi.org/10.3390/nu11081718.

    Article  PubMed Central  Google Scholar 

  48. van Koppen EJ, Schweizer JJ, Csizmadia CGDS, Krom Y, Hylkema HB, van Geel AM, et al. Long-term health and quality-of-life consequences of mass screening for childhood celiac disease: a 10-year follow-up study. Pediatrics. 2009;123:e582–8. https://doi.org/10.1542/peds.2008-2221.

    Article  PubMed  Google Scholar 

  49. Barrio J, Cilleruelo ML, Román E, Fernández C. Health-related quality of life using specific and generic questionnaires in Spanish coeliac children. Health Qual Life Outcomes. 2020;18:250. https://doi.org/10.1186/s12955-020-01494-x.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Khurana B, Lomash A, Khalil S, Bhattacharya M, Rajeshwari K, Kapoor S. Evaluation of the impact of celiac disease and its dietary manipulation on children and their caregivers. Indian J Gastroenterol. 2015;34:112–6. https://doi.org/10.1007/s12664-015-0563-6.

    Article  PubMed  Google Scholar 

  51. Mager DR, Marcon M, Brill H, Liu A, Radmanovich K, Mileski H, et al. Adherence to the gluten-free diet and health-related quality of life in an ethnically diverse pediatric population with celiac disease. J Pediatr Gastroenterol Nutr. 2018;66:941–8. https://doi.org/10.1097/MPG.0000000000001873.

    Article  PubMed  Google Scholar 

  52. Sawyer MG, Reynolds KE, Couper JJ, French DJ, Kennedy D, Martin J, et al. A two-year prospective study of the health-related quality of life of children with chronic illness? The parents? Perspective. Qual Life Res. 2005;14:395–405. https://doi.org/10.1007/s11136-004-0786-y.

    Article  PubMed  CAS  Google Scholar 

  53. Sainsbury K, Marques MM. The relationship between gluten free diet adherence and depressive symptoms in adults with coeliac disease: a systematic review with meta-analysis. Appetite. 2018;120:578–88. https://doi.org/10.1016/j.appet.2017.10.017.

    Article  PubMed  Google Scholar 

  54. Barberis N, Quattropani MC, Cuzzocrea F. Relationship between motivation, adherence to diet, anxiety symptoms, depression symptoms and quality of life in individuals with celiac disease. J Psychosom Res. 2019;124:109787.https://doi.org/10.1016/j.jpsychores.2019.109787.

  55. Wolf RL, Lebwohl B, Lee AR, Zybert P, Reilly NR, Cadenhead J, et al. Hypervigilance to a gluten-free diet and decreased quality of life in teenagers and adults with celiac disease. Dig Dis Sci. 2018;63:1438–48. https://doi.org/10.1007/s10620-018-4936-4.

    Article  PubMed  Google Scholar 

  56. Ukkola A, Mäki M, Kurppa K, Collin P, Huhtala H, Kekkonen L, et al. Patients’ experiences and perceptions of living with coeliac disease—implications for optimizing care. J Gastrointest Liver Dis JGLD. 2012;21:17–22.

    Google Scholar 

  57. Casellas F, Rodrigo L, Lucendo AJ, Fernández-Bañares F, Molina-Infante J, Vivas S, et al. Benefit on health-related quality of life of adherence to gluten-free diet in adult patients with celiac disease. Rev Espanola Enfermedades Dig Organo Soc Espanola Patol Dig. 2015;107:196–201.

    Google Scholar 

  58. Usai P, Manca R, Cuomo R, Lai MA, Boi MF. Effect of gluten-free diet and co-morbidity of irritable bowel syndrome-type symptoms on health-related quality of life in adult coeliac patients. Dig Liver Dis. 2007;39:824–8. https://doi.org/10.1016/j.dld.2007.05.017.

    Article  PubMed  CAS  Google Scholar 

  59. Högberg L, Grodzinsky E, Stenhammar L. Better dietary compliance in patients with coeliac disease diagnosed in early childhood. Scand J Gastroenterol. 2003;38:751–4. https://doi.org/10.1080/00365520310003318.

    Article  PubMed  Google Scholar 

  60. Olsson C, Hrnell A, Ivarsson A, Sydner YM. The everyday life of adolescent coeliacs: issues of importance for compliance with the gluten-free diet. J Hum Nutr Diet. 2008;21:359–67. https://doi.org/10.1111/j.1365-277x.2008.00867.x.

    Article  PubMed  CAS  Google Scholar 

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Barrio, J., Cilleruelo, M.L. (2022). Quality of Life in Celiac Disease. In: Amil-Dias, J., Polanco, I. (eds) Advances in Celiac Disease . Springer, Cham. https://doi.org/10.1007/978-3-030-82401-3_14

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