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http://dx.doi.org/10.5223/pghn.2020.23.3.286

Quality of Life in Children and Adolescents with Inflammatory Bowel Disease: Impact and Predictive Factors  

Silva, Larissa Caetano (Department of Pediatric Gastroenterology and Hepatology, Brasilia Jose Alencar Children's Hospital)
Seixas, Renata B.P. Melo (Department of Pediatric Gastroenterology and Hepatology, Brasilia Jose Alencar Children's Hospital)
de Carvalho, Elisa (Department of Pediatric Gastroenterology and Hepatology, Brasilia Jose Alencar Children's Hospital)
Publication Information
Pediatric Gastroenterology, Hepatology & Nutrition / v.23, no.3, 2020 , pp. 286-296 More about this Journal
Abstract
Purpose: Inflammatory bowel disease (IBD) in children and adolescents is associated with high morbidity and possibly has a significant negative impact on their quality of life. This study aimed to evaluate the quality of life of children and adolescents with IBD and define the variables that impact these individuals. Methods: We administered the Pediatric Quality of Life Questionnaire (PedsQL) to 35 children and adolescents diagnosed with IBD and with available quantitative data from clinical records on epidemiology, clinical evolution, complementary tests, medical interventions, and disease activity. Data were evaluated according to the IBD type and compared with a control group of healthy children. Results: The study group showed a significantly lower PedsQL score than the control group (p<0.01). Significant factors contributing to poor overall quality of life included female sex, Crohn's disease, surgery, and food restrictions. Symptoms such as diarrhea and the fear of using public toilets were associated with low physical scores. Feeling sick had a negative impact on the emotional PedsQL scores. Patients with a fear of using public toilets, anthropometric scores below the 3rd percentile, and greater disease activity scored lower in the social domain. Regarding school and psychosocial evaluations, younger children with symptom onset after the age of 2 years had lower scores than younger children with symptom onset before the age of 2 years. Conclusion: IBD negatively affects the quality of life of children and adolescents based on its impact on the physical, emotional, social, and psychosocial statuses of these patients.
Keywords
Inflammatory bowel disease in pediatrics; Health-related quality of life; Pediatric Quality of Life Questionnaire 4.0 Generic Core Scale questionnaire;
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1 Ryan JL, Mellon MW, Junger KW, Hente EA, Denson LA, Saeed SA, et al. The clinical utility of health-related quality of life screening in a pediatric inflammatory bowel disease clinic. Inflamm Bowel Dis 2013;19:2666-72.   DOI
2 Marcus SB, Strople JA, Neighbors K, Weissberg-Benchell J, Nelson SP, Limbers C, et al. Fatigue and health-related quality of life in pediatric inflammatory bowel disease. Clin Gastroenterol Hepatol 2009;7:554-61.   DOI
3 Perrin JM, Kuhlthau K, Chughtai A, Romm D, Kirschner BS, Ferry GD, et al. Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics. J Pediatr Gastroenterol Nutr 2008;46:164-71.   DOI
4 Otley A, Smith C, Nicholas D, Munk M, Avolio J, Sherman PM, et al. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2002;35:557-63.   DOI
5 Otley AR, Griffiths AM, Hale S, Kugathasan S, Pfefferkorn M, Mezoff A, et al.. Health-related quality of life in the first year after a diagnosis of pediatric inflammatory bowel disease. Inflamm Bowel Dis 2006;12:684-91.   DOI
6 IBD Working Group of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition. Inflammatory bowel disease in children and adolescents: recommendations for diagnosis--the Porto criteria. J Pediatr Gastroenterol Nutr 2005;41:1-7.   DOI
7 Turner D, Otley AR, Mack D, Hyams J, de Bruijne J, Uusoue K, et al. Development, validation, and evaluation of a pediatric ulcerative colitis activity index: a prospective multicenter study. Gastroenterology 2007;133:423-32.   DOI
8 Hyams JS, Ferry GD, Mandel FS, Gryboski JD, Kibort PM, Kirschner BS, et al. Development and validation of a pediatric Crohn's disease activity index. J Pediatr Gastroenterol Nutr 1991;12:439-47.   DOI
9 Ruemmele FM, Veres G, Kolho KL, Griffiths A, Levine A, Escher JC, et al.. Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease. J Crohn's Colitis 2014;8:1179-207.   DOI
10 Turner D, Levine A, Escher JC, Griffiths AM, Russell RK, Dignass A, et al.. Management of pediatric ulcerative colitis: joint ECCO and ESPGHAN evidence-based consensus guidelines. J Pediatr Gastroenterol Nutr 2012;55:340-61.   DOI
11 Klatchoian DA, Len CA, Terreri MT, Silva M, Itamoto C, Ciconelli RM, et al. Quality of life of children and adolescents from Sao Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life Inventory version 4.0 Generic Core Scales. J Pediatr 2008;84:308-15.
12 Silverberg MS, Satsangi J, Ahmad T, Arnott ID, Bernstein CN, Brant SR, et al. Toward an integrated clinical, molecular and serological classification of inflammatory bowel disease: report of a Working Party of the 2005 Montreal World Congress of Gastroenterology. Can J Gastroenterol 2005;19 Suppl A:5A-36A.   DOI
13 Cunningham C, Drotar D, Palermo TM, McGowan K, Arendt R. Health-related quality of life in children and adolescents with inflammatory bowel disease. Child Health Care 2007;36:29-43.   DOI
14 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001;39:800-12.   DOI
15 Mackner LM, Greenley RN, Szigethy E, Herzer M, Deer K, Hommel KA. Psychosocial issues in pediatric inflammatory bowel disease: report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. J Pediatr Gastroenterol Nutr 2013;56:449-58.   DOI
16 Varni JW, Bendo CB, Denham J, Shulman RJ, Self MM, Neigut DA, et al. $PedsQL^{TM}$ Gastrointestinal Symptoms Scales and Gastrointestinal Worry Scales in pediatric patients with functional and organic gastrointestinal diseases in comparison to healthy controls. Qual Life Res 2015;24:363-78.   DOI
17 Kilroy S, Nolan E, Sarma KM. Quality of life and level of anxiety in youths with inflammatory bowel disease in Ireland. J Pediatr Gastroenterol Nutr 2011;53:275-9.   DOI
18 Reigada LC, Hoogendoorn CJ, Walsh LC, Lai J, Szigethy E, Cohen BH, et al. Anxiety symptoms and disease severity in children and adolescents with Crohn disease. J Pediatr Gastroenterol Nutr 2015;60:30-5.   DOI
19 Gray WN, Denson LA, Baldassano RN, Hommel KA. Disease activity, behavioral dysfunction, and health-related quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2011;17:1581-6.   DOI
20 Herzer M, Denson LA, Baldassano RN, Hommel KA. Patient and parent psychosocial factors associated with health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2011;52:295-9.   DOI
21 Ross SC, Strachan J, Russell RK, Wilson SL. Psychosocial functioning and health-related quality of life in paediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2011;53:480-8.   DOI
22 Greenley RN, Hommel KA, Nebel J, Raboin T, Li SH, Simpson P, et al. A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. J Pediatr Psychol 2010;35:857-69.   DOI
23 van der Zaag-Loonen HJ, Grootenhuis MA, Last BF, Derkx HH. Coping strategies and quality of life of adolescents with inflammatory bowel disease. Qual Life Res 2004;13:1011-9.   DOI
24 Herzer M, Denson LA, Baldassano RN, Hommel KA. Family functioning and health-related quality of life in adolescents with pediatric inflammatory bowel disease. Eur J Gastroenterol Hepatol 2011;23:95-100.   DOI
25 Kim S, Park S, Kang Y, Kim JE, Kang B, Choe BH, et al. Can we estimate quality of life in pediatric inflammatory bowel disease patients? An Asian multicenter study. J Pediatr Gastroenterol Nutr 2019;68:45-9.   DOI
26 Varni JW, Shulman RJ, Self MM, Saeed SA, Patel AS, Nurko S, et al.. Gastrointestinal symptoms predictors of health-related quality of life in patients with inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2016;63:e186-92.   DOI
27 De Boer M, Grootenhuis M, Derkx B, Last B. Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2005;11:400-6.   DOI
28 Van de Vijver E, Van Gils A, Beckers L, Van Driessche Y, Moes ND, van Rheenen PF. Fatigue in children and adolescents with inflammatory bowel disease. World J Gastroenterol 2019;25:632-43.   DOI
29 Gold N, Issenman R, Roberts J, Watt S. Well-adjusted children: an alternate view of children with inflammatory bowel disease and functional gastrointestinal complaints. Inflamm Bowel Dis 2000;6:1-7.   DOI
30 Jones JL, Nguyen GC, Benchimol EI, Bernstein CN, Bitton A, Kaplan GG, et al. The impact of Inflammatory bowel disease in Canada 2018: quality of life. J Can Assoc Gastroenterol 2019;2(Suppl 1):S42-8.   DOI
31 Varni JW, Bendo CB, Nurko S, Shulman RJ, Self MM, Franciosi JP, et al.. Health-related quality of life in pediatric patients with functional and organic gastrointestinal diseases. J Pediatr 2015;166:85-90.   DOI
32 Chouliaras G, Margoni D, Dimakou K, Fessatou S, Panayiotou I, Roma-Giannikou E. Disease impact on the quality of life of children with inflammatory bowel disease. World J Gastroenterol 2017;23:1067-75.   DOI
33 Kappelman MD, Moore KR, Allen JK, Cook SF. Recent trends in the prevalence of Crohn's disease and ulcerative colitis in a commercially insured US population. Dig Dis Sci 2013;58:519-25.   DOI
34 Gasparetto M, Guariso G. Highlights in IBD epidemiology and its natural history in the paediatric age. Gastroenterol Res Pract 2013;2013:829040.
35 Malaty HM, Fan X, Opekun AR, Thibodeaux C, Ferry GD. Rising incidence of inflammatory bowel disease among children: a 12-year study. J Pediatr Gastroenterol Nutr 2010;50:27-31.   DOI
36 Benchimol EI, Fortinsky KJ, Gozdyra P, Van den Heuvel M, Van Limbergen J, Griffiths AM. Epidemiology of pediatric inflammatory bowel disease: a systematic review of international trends. Inflamm Bowel Dis 2011;17:423-39.   DOI
37 Kappelman MD, Rifas-Shiman SL, Kleinman K, Ollendorf D, Bousvaros A, Grand RJ, et al. The prevalence and geographic distribution of Crohn's disease and ulcerative colitis in the United States. Clin Gastroenterol Hepatol 2007;5:1424-9.   DOI
38 Kugathasan S, Judd RH, Hoffmann RG, Heikenen J, Telega G, Khan F, et al.. Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: a statewide population-based study. J Pediatr 2003;143:525-31.   DOI
39 Kunz JH, Hommel KA, Greenley RN. Health-related quality of life of youth with inflammatory bowel disease: a comparison with published data using the PedsQL 4.0 generic core scales. Inflamm Bowel Dis 2010;16:939-46.   DOI