Skip to main content
Erschienen in: Quality of Life Research 1/2012

01.02.2012

Evaluation of the quality of life of children with celiac disease and their parents: a case–control study

verfasst von: Cláudia Maria de Lorenzo, João Carlos Xikota, Mônica Chang Wayhs, Sílvia Modesto Nassar, Maria Marlene de Souza Pires

Erschienen in: Quality of Life Research | Ausgabe 1/2012

Einloggen, um Zugang zu erhalten

Abstract

Purpose

The purpose of the present study was to evaluate the quality of life (QoL) of children with CD and of their parents and to compare it with that of children without CD and of their parents.

Methods

A case–control study was conducted to evaluate the quality of life of children (5–12 years) with CD and one of their parents, compared to the QoL of children without CD (and their parents as their caregivers ). The QoL was assessed by applying the following questionnaires: AUQUEI (children) and WHOQOL-BREF (parents).

Results

QoL was evaluated in 33 children with CD, 63 children without CD, and of their respective parents as their parent caregivers (96 adults). QoL total scores were similar between the groups of children with and without CD. However, in the Leisure dimension, the scores of children with CD were significantly lower than those of the controls (P = 0.029). Similarly, when assessing the QoL of the parents, we found scores significantly lower in the social dimension (P = 0.0196) for parents of children with CD compared to parents of children without CD. Family income presented an impact on the QoL in adults, but did not affect children. In CD group, children of mothers who had lower educational levels presented better scores in the function dimension, regarding self-care and autonomy.

Conclusions

There is an impairment of the QoL of children with CD and of their parents, with regard to social life, particularly in the leisure (children) and social (adults) dimensions.
Literatur
1.
Zurück zum Zitat Rostom, A., Murray, J. A., & Kagnoff, M. F. (2006). American Gastroenterological Association (AGA) Institute technical review on the diagnosis and management of celiac disease. Gastroenterology, 131, 1981–2002.PubMedCrossRef Rostom, A., Murray, J. A., & Kagnoff, M. F. (2006). American Gastroenterological Association (AGA) Institute technical review on the diagnosis and management of celiac disease. Gastroenterology, 131, 1981–2002.PubMedCrossRef
2.
Zurück zum Zitat Walker-Smith, J. A., Guandalin, S., Schmitz, J., Shmerling, D. H., & Visakorpi, J. K. (1990). Working group of European society of paediatric gastroenterology and nutrition. Revised criteria for diagnosis of coeliac disease. Archives Of Disease in Childhood, 65, 909–911. Walker-Smith, J. A., Guandalin, S., Schmitz, J., Shmerling, D. H., & Visakorpi, J. K. (1990). Working group of European society of paediatric gastroenterology and nutrition. Revised criteria for diagnosis of coeliac disease. Archives Of Disease in Childhood, 65, 909–911.
3.
Zurück zum Zitat Gelfond, D., & Fasano, A. (2006). Celiac disease in the pediatric population. Pediatric Annals, 35, 275–279.PubMed Gelfond, D., & Fasano, A. (2006). Celiac disease in the pediatric population. Pediatric Annals, 35, 275–279.PubMed
4.
Zurück zum Zitat Hornell, A. (2008). Living well with celiac disease? Journal of Pediatric Gastroenterology and Nutrition, 47, 544–546.PubMedCrossRef Hornell, A. (2008). Living well with celiac disease? Journal of Pediatric Gastroenterology and Nutrition, 47, 544–546.PubMedCrossRef
5.
Zurück zum Zitat Fleck, M. P., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., et al. (2000). Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-bref. Revista de Saude Publica, 34, 178–183.PubMedCrossRef Fleck, M. P., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., et al. (2000). Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-bref. Revista de Saude Publica, 34, 178–183.PubMedCrossRef
6.
Zurück zum Zitat Eiser, C. (1997). Children’s quality of life measures. Archives of Disease in Childhood, 77, 350–354.PubMedCrossRef Eiser, C. (1997). Children’s quality of life measures. Archives of Disease in Childhood, 77, 350–354.PubMedCrossRef
7.
Zurück zum Zitat Manificat, S., Dazord, A., Cochat, P., & Nicolas, J. (1997). Evaluation of the quality of life in pediatrics: How to collect the point of view of children. Archives de Pediatrie, 4, 1238–1246.PubMedCrossRef Manificat, S., Dazord, A., Cochat, P., & Nicolas, J. (1997). Evaluation of the quality of life in pediatrics: How to collect the point of view of children. Archives de Pediatrie, 4, 1238–1246.PubMedCrossRef
8.
Zurück zum Zitat Assumpcao, F. B., Jr., Kuczynski, E., Sprovieri, M. H., & Aranha, E. M. (2000). Quality of life evaluation scale (AUQEI–Autoquestionnaire Qualite de Vie Enfant Image). Validity and reliability of a quality of life scale for children 4 to 12 years-old. Arquivos de Neuro-Psiquiatria, 58, 119–127.PubMedCrossRef Assumpcao, F. B., Jr., Kuczynski, E., Sprovieri, M. H., & Aranha, E. M. (2000). Quality of life evaluation scale (AUQEI–Autoquestionnaire Qualite de Vie Enfant Image). Validity and reliability of a quality of life scale for children 4 to 12 years-old. Arquivos de Neuro-Psiquiatria, 58, 119–127.PubMedCrossRef
9.
Zurück zum Zitat Manificat, S., Dazord, A., Cochat, P., Morin, D., Plainguet, F., & Debray, D. (2003). Quality of life of children and adolescents after kidney or liver transplantation: Child, parents and caregiver’s point of view. Pediatric Transplantation, 7, 228–235.PubMedCrossRef Manificat, S., Dazord, A., Cochat, P., Morin, D., Plainguet, F., & Debray, D. (2003). Quality of life of children and adolescents after kidney or liver transplantation: Child, parents and caregiver’s point of view. Pediatric Transplantation, 7, 228–235.PubMedCrossRef
10.
Zurück zum Zitat HO, W. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychological Medicine, 28, 551–558.CrossRef HO, W. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychological Medicine, 28, 551–558.CrossRef
11.
Zurück zum Zitat Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5, 1–157.PubMed Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5, 1–157.PubMed
12.
Zurück zum Zitat Jenney, M. E., & Campbell, S. (1997). Measuring quality of life. Archives of Disease in Childhood, 77, 347–350.PubMedCrossRef Jenney, M. E., & Campbell, S. (1997). Measuring quality of life. Archives of Disease in Childhood, 77, 347–350.PubMedCrossRef
13.
Zurück zum Zitat Kolsteren, M. M., Koopman, H. M., Schalekamp, G., & Mearin, M. L. (2001). Health-related quality of life in children with celiac disease. Journal of Pediatrics, 138, 593–595.PubMedCrossRef Kolsteren, M. M., Koopman, H. M., Schalekamp, G., & Mearin, M. L. (2001). Health-related quality of life in children with celiac disease. Journal of Pediatrics, 138, 593–595.PubMedCrossRef
14.
Zurück zum Zitat Rashid, M., Cranney, A., Zarkadas, M., Graham, I. D., Switzer, C., Case, S., et al. (2005). Celiac disease: Evaluation of the diagnosis and dietary compliance in Canadian children. Pediatrics, 116, e754–e759.PubMedCrossRef Rashid, M., Cranney, A., Zarkadas, M., Graham, I. D., Switzer, C., Case, S., et al. (2005). Celiac disease: Evaluation of the diagnosis and dietary compliance in Canadian children. Pediatrics, 116, e754–e759.PubMedCrossRef
15.
Zurück zum Zitat Wagner, G., Berger, G., Sinnreich, U., Grylli, V., Schober, E., Huber, W. D., et al. (2008). Quality of life in adolescents with treated coeliac disease: Influence of compliance and age at diagnosis. Journal of Pediatric Gastroenterology and Nutrition, 47, 555–561.PubMedCrossRef Wagner, G., Berger, G., Sinnreich, U., Grylli, V., Schober, E., Huber, W. D., et al. (2008). Quality of life in adolescents with treated coeliac disease: Influence of compliance and age at diagnosis. Journal of Pediatric Gastroenterology and Nutrition, 47, 555–561.PubMedCrossRef
16.
Zurück zum Zitat Hopman, E. G., Koopman, H. M., Wit, J. M., & Mearin, M. L. (2009). Dietary compliance and health-related quality of life in patients with coeliac disease. European Journal of Gastroenterology and Hepatology, 21, 1056–1061.PubMedCrossRef Hopman, E. G., Koopman, H. M., Wit, J. M., & Mearin, M. L. (2009). Dietary compliance and health-related quality of life in patients with coeliac disease. European Journal of Gastroenterology and Hepatology, 21, 1056–1061.PubMedCrossRef
17.
Zurück zum Zitat van Doorn, R. K., Winkler, L. M., Zwinderman, K. H., Mearin, M. L., & Koopman, H. M. (2008). CDDUX: A disease-specific health-related quality-of-life questionnaire for children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition, 47, 147–152.PubMedCrossRef van Doorn, R. K., Winkler, L. M., Zwinderman, K. H., Mearin, M. L., & Koopman, H. M. (2008). CDDUX: A disease-specific health-related quality-of-life questionnaire for children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition, 47, 147–152.PubMedCrossRef
18.
Zurück zum Zitat Castro, E. K., & Piccinini, C. A. (2002). Implications of physical chronic disease in childhood to family relationships: Some theoretical questions. Psicologia: Reflexão e Crítica, 15, 625–635.CrossRef Castro, E. K., & Piccinini, C. A. (2002). Implications of physical chronic disease in childhood to family relationships: Some theoretical questions. Psicologia: Reflexão e Crítica, 15, 625–635.CrossRef
19.
Zurück zum Zitat Lv, R., Wu, L., Jin, L., Lu, Q., Wang, M., Qu, Y., et al. (2009). Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurologica Scandinavica, 120, 335–341.PubMedCrossRef Lv, R., Wu, L., Jin, L., Lu, Q., Wang, M., Qu, Y., et al. (2009). Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurologica Scandinavica, 120, 335–341.PubMedCrossRef
20.
Zurück zum Zitat Verhey, L. H., Kulik, D. M., Ronen, G. M., Rosenbaum, P., Lach, L., & Streiner, D. L. (2009). Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents? Epilepsy & Behavior, 14, 407–410.CrossRef Verhey, L. H., Kulik, D. M., Ronen, G. M., Rosenbaum, P., Lach, L., & Streiner, D. L. (2009). Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents? Epilepsy & Behavior, 14, 407–410.CrossRef
21.
Zurück zum Zitat Xiang, Y. T., Luk, E. S., & Lai, K. Y. (2009). Quality of life in parents of children with attention-deficit-hyperactivity disorder in Hong Kong. Australian and New Zealand Journal of Psychiatry, 43, 731–738.PubMedCrossRef Xiang, Y. T., Luk, E. S., & Lai, K. Y. (2009). Quality of life in parents of children with attention-deficit-hyperactivity disorder in Hong Kong. Australian and New Zealand Journal of Psychiatry, 43, 731–738.PubMedCrossRef
22.
Zurück zum Zitat Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger Syndrome or High-Functioning Autism. Health Qual Life Outcomes, 4, 1.PubMedCrossRef Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger Syndrome or High-Functioning Autism. Health Qual Life Outcomes, 4, 1.PubMedCrossRef
23.
Zurück zum Zitat Sverker, A., Hensing, G., & Hallert, C. (2005). ‘Controlled by food’- lived experiences of coeliac disease. Journal of Human Nutrition & Dietetics, 18, 171–180.CrossRef Sverker, A., Hensing, G., & Hallert, C. (2005). ‘Controlled by food’- lived experiences of coeliac disease. Journal of Human Nutrition & Dietetics, 18, 171–180.CrossRef
24.
Zurück zum Zitat Sverker, A., Ostlund, G., Hallert, C., & Hensing, G. (2007). Sharing life with a gluten-intolerant person–the perspective of close relatives. Journal of Human Nutrition & Dietetics, 20, 412–422.CrossRef Sverker, A., Ostlund, G., Hallert, C., & Hensing, G. (2007). Sharing life with a gluten-intolerant person–the perspective of close relatives. Journal of Human Nutrition & Dietetics, 20, 412–422.CrossRef
25.
Zurück zum Zitat Nachman, F., Maurino, E., Vazquez, H., Sfoggia, C., Gonzalez, A., Gonzalez, V., et al. (2009). Quality of life in celiac disease patients: Prospective analysis on the importance of clinical severity at diagnosis and the impact of treatment. Digestive and Liver Disease, 41, 15–25.PubMedCrossRef Nachman, F., Maurino, E., Vazquez, H., Sfoggia, C., Gonzalez, A., Gonzalez, V., et al. (2009). Quality of life in celiac disease patients: Prospective analysis on the importance of clinical severity at diagnosis and the impact of treatment. Digestive and Liver Disease, 41, 15–25.PubMedCrossRef
26.
Zurück zum Zitat Hallert, C., & Lohiniemi, S. (1999). Quality of life of celiac patients living on a gluten-free diet. Nutrition, 15, 795–797.PubMedCrossRef Hallert, C., & Lohiniemi, S. (1999). Quality of life of celiac patients living on a gluten-free diet. Nutrition, 15, 795–797.PubMedCrossRef
27.
Zurück zum Zitat Sverker, A., Ostlund, G., Hallert, C., & Hensing, G. (2009). ‘I lose all these hours’.–exploring gender and consequences of dilemmas experienced in everyday life with coeliac disease. Scandinavian Journal of Caring Sciences, 23, 342–352.PubMedCrossRef Sverker, A., Ostlund, G., Hallert, C., & Hensing, G. (2009). ‘I lose all these hours’.–exploring gender and consequences of dilemmas experienced in everyday life with coeliac disease. Scandinavian Journal of Caring Sciences, 23, 342–352.PubMedCrossRef
28.
Zurück zum Zitat Solaymani-Dodaran, M., West, J., & Logan, R. F. (2007). Long-term mortality in people with celiac disease diagnosed in childhood compared with adulthood: A population-based cohort study. American Journal of Gastroenterology, 102, 864–870.PubMedCrossRef Solaymani-Dodaran, M., West, J., & Logan, R. F. (2007). Long-term mortality in people with celiac disease diagnosed in childhood compared with adulthood: A population-based cohort study. American Journal of Gastroenterology, 102, 864–870.PubMedCrossRef
Metadaten
Titel
Evaluation of the quality of life of children with celiac disease and their parents: a case–control study
verfasst von
Cláudia Maria de Lorenzo
João Carlos Xikota
Mônica Chang Wayhs
Sílvia Modesto Nassar
Maria Marlene de Souza Pires
Publikationsdatum
01.02.2012
Verlag
Springer Netherlands
Erschienen in
Quality of Life Research / Ausgabe 1/2012
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9930-7

Weitere Artikel der Ausgabe 1/2012

Quality of Life Research 1/2012 Zur Ausgabe