Clinical Remission and Psychological Management are Major Issues for the Quality of Life in Pediatric Crohn Disease
Anne Gourdonneau
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorLéa Bruneau
Methodological Support and Biostatistics Unit, University Hospital, Saint Denis, Reunion Island
National Institute of Health and Medical Research (INSERM), CIC 1410, Saint Pierre, Reunion Island
Search for more papers by this authorFrank M. Ruemmele
Department of Pediatric Gastroenterology, APHP Hôpital Necker Enfants Malades, Paris
Search for more papers by this authorLorenzo Norsa
Department of Pediatric Gastroenterology, APHP Hôpital Necker Enfants Malades, Paris
Search for more papers by this authorArmelle Takeda
Department of Pediatric Gastroenterology, APHP Hôpital Necker Enfants Malades, Paris
Search for more papers by this authorCatherine Le Gall
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Lyon
Search for more papers by this authorHaude Clouzeau
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorLaurent Rebouissoux
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorAlain Dabadie
Department of Pediatrics, Hôpital Sud, University Hospital Rennes, Strasbourg
Search for more papers by this authorLaure Bridoux-Henno
Department of Pediatrics, Hôpital Sud, University Hospital Rennes, Strasbourg
Search for more papers by this authorJulie Rebeuh
Department of Pediatrics, University Hospital, Strasbourg
Search for more papers by this authorNadège Thomassin
Department of Pediatrics, University Hospital, Grenoble
Search for more papers by this authorJérôme Viala
Department of Pediatric Gastroenterology and Hepatology, University Hospital, APHP Hôpital Robert Debré, Paris
Search for more papers by this authorStéphanie Willot
Department of Pediatrics, University Hospital, Hôpital Clocheville, Tours
Search for more papers by this authorAnne Breton
Department of Pediatrics, Gastroenterology, Hepatology, Nutrition, and Diabetes, University Hospital, Toulouse
Search for more papers by this authorStéphanie Coopman
Division of Gastroenterology, Hepatology and Nutrition, Department of Paediatrics, Jeanne De Flandre Children's Hospital, Lille University Faculty of Medicine, Lille
Search for more papers by this authorClaire Spyckerelle
Department of Pediatrics, St Vincent de Paul Hospital and Lille Catholic University, Lille
Search for more papers by this authorJeanne Languepin
Department of Pediatrics, University Hospital, Limoges
Search for more papers by this authorOlivier Mouterde
Department of Pediatrics, University Hospital, Rouen
Search for more papers by this authorVanessa Degas
Department of Pediatrics, General Hospital, Corbeil
Search for more papers by this authorMarjorie Bonneton
Department of Pediatric Gastroenterology, Hepatology and Nutrition, Children's Hospital, Vandoeuvre-lès-Nancy, Paris
Search for more papers by this authorJulie Lemale
Department of Pediatric Gastroenterology and Hepatology, University Hospital, APHP Hôpital Trousseau, Paris
Search for more papers by this authorSylvie Destombe
Department of Pediatrics, University Hospital, St-Etienne
Search for more papers by this authorKareen Billiemaz
Department of Pediatrics, University Hospital, St-Etienne
Search for more papers by this authorNicolas Caron
Department of Pediatrics, University Hospital, Clermont Ferrand
Search for more papers by this authorCorinne Borderon
Department of Pediatrics, University Hospital, Clermont Ferrand
Search for more papers by this authorClaire Dupont
Department of Pediatric Gastroenterology, University Hospital, Caen
Search for more papers by this authorValérie Triolo
Department of Pediatrics, Centre Hospitalo-Universitaire de Nice, Nice
Search for more papers by this authorAgathe Jobert
Pediatric Department, General Hospital, Saint Nazaire, France
Search for more papers by this authorThierry Lamireau
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorCorresponding Author
Raphaël Enaud
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Address correspondence and reprint requests to Raphaël Enaud, MD, Department of Pediatric Gastroenterology and Hepatology, University Hospital, Place Amélie Raba Léon, 33076 Bordeaux Cedex, France (e-mail: [email protected]).Search for more papers by this authorAnne Gourdonneau
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorLéa Bruneau
Methodological Support and Biostatistics Unit, University Hospital, Saint Denis, Reunion Island
National Institute of Health and Medical Research (INSERM), CIC 1410, Saint Pierre, Reunion Island
Search for more papers by this authorFrank M. Ruemmele
Department of Pediatric Gastroenterology, APHP Hôpital Necker Enfants Malades, Paris
Search for more papers by this authorLorenzo Norsa
Department of Pediatric Gastroenterology, APHP Hôpital Necker Enfants Malades, Paris
Search for more papers by this authorArmelle Takeda
Department of Pediatric Gastroenterology, APHP Hôpital Necker Enfants Malades, Paris
Search for more papers by this authorCatherine Le Gall
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Lyon
Search for more papers by this authorHaude Clouzeau
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorLaurent Rebouissoux
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorAlain Dabadie
Department of Pediatrics, Hôpital Sud, University Hospital Rennes, Strasbourg
Search for more papers by this authorLaure Bridoux-Henno
Department of Pediatrics, Hôpital Sud, University Hospital Rennes, Strasbourg
Search for more papers by this authorJulie Rebeuh
Department of Pediatrics, University Hospital, Strasbourg
Search for more papers by this authorNadège Thomassin
Department of Pediatrics, University Hospital, Grenoble
Search for more papers by this authorJérôme Viala
Department of Pediatric Gastroenterology and Hepatology, University Hospital, APHP Hôpital Robert Debré, Paris
Search for more papers by this authorStéphanie Willot
Department of Pediatrics, University Hospital, Hôpital Clocheville, Tours
Search for more papers by this authorAnne Breton
Department of Pediatrics, Gastroenterology, Hepatology, Nutrition, and Diabetes, University Hospital, Toulouse
Search for more papers by this authorStéphanie Coopman
Division of Gastroenterology, Hepatology and Nutrition, Department of Paediatrics, Jeanne De Flandre Children's Hospital, Lille University Faculty of Medicine, Lille
Search for more papers by this authorClaire Spyckerelle
Department of Pediatrics, St Vincent de Paul Hospital and Lille Catholic University, Lille
Search for more papers by this authorJeanne Languepin
Department of Pediatrics, University Hospital, Limoges
Search for more papers by this authorOlivier Mouterde
Department of Pediatrics, University Hospital, Rouen
Search for more papers by this authorVanessa Degas
Department of Pediatrics, General Hospital, Corbeil
Search for more papers by this authorMarjorie Bonneton
Department of Pediatric Gastroenterology, Hepatology and Nutrition, Children's Hospital, Vandoeuvre-lès-Nancy, Paris
Search for more papers by this authorJulie Lemale
Department of Pediatric Gastroenterology and Hepatology, University Hospital, APHP Hôpital Trousseau, Paris
Search for more papers by this authorSylvie Destombe
Department of Pediatrics, University Hospital, St-Etienne
Search for more papers by this authorKareen Billiemaz
Department of Pediatrics, University Hospital, St-Etienne
Search for more papers by this authorNicolas Caron
Department of Pediatrics, University Hospital, Clermont Ferrand
Search for more papers by this authorCorinne Borderon
Department of Pediatrics, University Hospital, Clermont Ferrand
Search for more papers by this authorClaire Dupont
Department of Pediatric Gastroenterology, University Hospital, Caen
Search for more papers by this authorValérie Triolo
Department of Pediatrics, Centre Hospitalo-Universitaire de Nice, Nice
Search for more papers by this authorAgathe Jobert
Pediatric Department, General Hospital, Saint Nazaire, France
Search for more papers by this authorThierry Lamireau
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Search for more papers by this authorCorresponding Author
Raphaël Enaud
Department of Pediatric Gastroenterology and Hepatology, University Hospital, Bordeaux
Address correspondence and reprint requests to Raphaël Enaud, MD, Department of Pediatric Gastroenterology and Hepatology, University Hospital, Place Amélie Raba Léon, 33076 Bordeaux Cedex, France (e-mail: [email protected]).Search for more papers by this authorThe authors report no conflicts of interest.
This work is dedicated to the memory of Dr Laurent Michaud.
Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (www.jpgn.org).
ABSTRACT
Objectives:
Crohn disease (CD) can affect patient's quality of life (QOL) with physical, social, and psychological impacts. This study aimed to investigate the QOL of children with CD and its relationship with patient and disease characteristics.
Methods:
Children ages from 10 to 17 years with diagnosed CD for more than 6 months were eligible to this cross-sectional study conducted in 35 French pediatric centers. QOL was assessed by the IMPACT-III questionnaire. Patient and disease characteristics were collected.
Results:
A total of 218 children (42% of girls) were included at a median age of 14 years (interquartile range [IQR]: 13--16). Median duration of CD was 3.2 years (IQR: 1.7–5.1) and 63% of children were in clinical remission assessed by wPCDAI. Total IMPACT-III score was 62.8 (±11.0). The lowest score was in “emotional functioning” subdomain (mean: 42.8 ± 11.2). Clinical remission was the main independent factor associated with QOL of children with CD (5.74 points higher compared with those “with active disease”, 95% confidence interval [CI] 2.77--8.70, P < 0.001). Age of patient at the evaluation was found negatively correlated with QOL (−0.76 per year, 95% CI: −1.47 to −0.06, P = 0.009). Presence of psychological disorders was associated with a lower QOL (−9.6 points lower to those without, 95% CI: −13.34 to −5.86, P < 0.0001). Total IMPACT-III and its subdomains scores were not related to sex, disease duration, or treatments.
Conclusions:
These results not only confirm that clinical remission is a major issue for the QOL of patients, but also highlights the importance of psychological care.
REFERENCES
- 1.Eiser C. Children's quality of life measures. Arch Dis Child 1997; 77: 350–354.
- 2.Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001; 5: 1–157.
- 3.Rabbett H, Elbadri A, Thwaites R, et al. Quality of life in children with Crohn's disease. J Pediatr Gastroenterol Nutr 1996; 23: 528–533.
- 4.Gallo J, Grant A, Otley AR, et al. Do parents and children agree? Quality-of-life assessment of children with inflammatory bowel disease and their parents. J Pediatr Gastroenterol Nutr 2014; 58: 481–485.
- 5.Engström I. Parental distress and social interaction in families with children with inflammatory bowel disease. J Am Acad Child Adolesc Psychiatry 1991; 30: 904–912.
- 6.Lowe W, Kenwright D, Wyeth J, et al. Crohn disease: effect on children's lifestyles. J Pediatr Gastroenterol Nutr 2012; 54: 397–400.
- 7.Hill R, Lewindon P, Muir R, et al. Quality of life in children with Crohn disease. J Pediatr Gastroenterol Nutr 2010; 51: 35–40.
- 8.Gray WN, Denson LA, Baldassano RN, et al. Disease activity, behavioral dysfunction, and health-related quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2011; 17: 1581–1586.
- 9.Ye BD, Travis S. Improving the quality of care for inflammatory bowel disease. Intest Res 2018; 17: 45–53.
- 10.Conrad D, Haynes M, Salamon P, et al. Cystic fibrosis therapy: a community ecology perspective. Am J Respir Cell Mol Biol 2013; 48: 150–156.
- 11.Otley A, Smith C, Nicholas D, 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: 557–563.
- 12.Perrin JM, Kuhlthau K, Chughtai A, et al. Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics. J Pediatr Gastroenterol Nutr 2008; 46: 164–171.
- 13.Outley A. Measurement of Quality of Life in Pediatric Inflammatory Bowel Disease. Pediatr Inflamm Bowel Dis 2013; 68: 45–49. Springer science: 491-2.
- 14.Clark JG, Srinath AI, Youk AO, et al. Predictors of depression in youth with Crohn disease. J Pediatr Gastroenterol Nutr 2014; 58: 569–573.
- 15.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: 275–279.
- 16.Reigada LC, Bruzzese J-M, Benkov KJ, et al. Illness-specific anxiety: implications for functioning and utilization of medical services in adolescents with inflammatory bowel disease. J Spec Pediatr Nurs 2011; 16: 207–215.
- 17.Guthrie E, Jackson J, Shaffer J, et al. Psychological disorder and severity of inflammatory bowel disease predict health-related quality of life in ulcerative colitis and Crohn's disease. Am J Gastroenterol 2002; 97: 1994–1999.
- 18.Chouliaras G, Margoni D, Dimakou K, et al. Disease impact on the quality of life of children with inflammatory bowel disease. World J Gastroenterol 2017; 23: 1067–1075.
- 19.Kim S, Park S, Kang Y, et al. Can we estimate quality of life in pediatric inflammatory bowel disease patients? An Asian Multicenter Study. J Pediatr Gastroenterol Nutr 2019; 68: 45–49.
- 20.Stapersma L, van den Brink G, van der Ende J, et al. Illness perceptions and depression are associated with health-related quality of life in youth with inflammatory bowel disease. Int J Behav Med 2019; 26: 415–426.
- 21.Turner D, Griffiths AM, Walters TD, et al. Mathematical weighting of the pediatric Crohn's disease activity index (PCDAI) and comparison with its other short versions. Inflamm Bowel Dis 2012; 18: 55–62.
- 22.Turner D, Levine A, Walters TD, et al. Which PCDAI version best reflects intestinal inflammation in pediatric Crohn disease? J Pediatr Gastroenterol Nutr 2017; 64: 254–260.
- 23.Ogden CA, Akobeng AK, Abbott J, et al. Validation of an instrument to measure quality of life in British children with inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2011; 53: 280–286.
- 24.Otley AR, Xu S, Yan S, et al. IMPACT-III is a valid, reliable and responsive measure of health-related quality of life in pediatric Crohn's disease. J Pediatr Gastroenterol Nutr 2006; 43: S49.
- 25.Szabó D, Kökönyei G, Arató A, et al. Autoregressive cross-lagged models of IMPACT-III and Pediatric Crohn's Disease Activity Indexes during one year infliximab therapy in pediatric patients with Crohn's disease. J Crohns Colitis 2014; 8: 747–755.
- 26.Haapamäki J, Roine RP, Sintonen H, et al. Health-related quality of life in paediatric patients with inflammatory bowel disease related to disease activity. J Paediatr Child Health 2011; 47: 832–837.
- 27.Karwowski CA, Keljo D, Szigethy E. Strategies to improve quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2009; 15: 1755–1764.
- 28.De Boer M, Grootenhuis M, Derkx B, et al. Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2005; 11: 400–406.
- 29.Cunningham C, Drotar D, Palermo TM, et al. Health-related quality of life in children and adolescents with inflammatory bowel disease. Children's Health Care 2007; 36: 29–43.
- 30.Loonen HJ, Grootenhuis MA, Last BF, et al. Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire. Acta Paediatr Oslo Nor 1992 2002; 91: 348–354.
- 31.Thompson RD, Delaney P, Flores I, et al. Cognitive-behavioral therapy for children with comorbid physical illness. Child Adolesc Psychiatr Clin N Am 2011; 20: 329–348.
- 32.Engström I, Lindquist BL. Inflammatory bowel disease in children and adolescents: a somatic and psychiatric investigation. Acta Paediatr Scand 1991; 80: 640–647.
- 33.Kashikar-Zuck S, Goldschneider KR, Powers SW, et al. Depression and functional disability in chronic pediatric pain. Clin J Pain 2001; 17: 341–349.
- 34.Palermo TM, Harrison D, Koh JL. Effect of disease-related pain on the health-related quality of life of children and adolescents with cystic fibrosis. Clin J Pain 2006; 22: 532–537.
- 35.Sawyer MG, Whitham JN, Roberton DM, et al. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology (Oxford) 2004; 43: 325–330.
- 36.Zimmerman LA, Srinath AI, Goyal A, et al. The overlap of functional abdominal pain in pediatric Crohn's disease. Inflamm Bowel Dis 2013; 19: 826–831.
- 37.Otley AR, Griffiths AM, Hale S, et al. Pediatric IBD Collaborative Research Group. Health-related quality of life in the first year after a diagnosis of pediatric inflammatory bowel disease. Inflamm Bowel Dis 2006; 12: 684–691.
- 38.Vogelaar L, Spijker AV, van der Woude CJ. The impact of biologics on health-related quality of life in patients with inflammatory bowel disease. Clin Exp Gastroenterol 2009; 2: 101–109.
- 39.DeBoer MD, Barnes BH, Stygles NA, et al. Changes in inflammation and QoL after a single dose of infliximab during ongoing IBD treatment. J Pediatr Gastroenterol Nutr 2012; 54: 486–490.
- 40.Taylor K, Scruggs PW, Balemba OB, et al. Associations between physical activity, resilience, and quality of life in people with inflammatory bowel disease. Eur J Appl Physiol 2018; 118: 829–836.
- 41.Packer N, Hoffman-Goetz L, Ward G. Does physical activity affect quality of life, disease symptoms and immune measures in patients with inflammatory bowel disease? A systematic review. J Sports Med Phys Fitness 2010; 50: 1–18.
- 42.Varni JW, Shulman RJ, Self MM, et al. Pediatric Quality of Life Inventory™ Gastrointestinal Symptoms Module Testing Study Consortium. Perceived medication adherence barriers mediating effects between gastrointestinal symptoms and health-related quality of life in pediatric inflammatory bowel disease. Qual Life Res 2018; 27: 195–204.
- 43.Jones PD, Kappelman MD, Martin CF, et al. Exercise decreases risk of future active disease in patients with inflammatory bowel disease in remission. Inflamm Bowel Dis 2015; 21: 1063–1071.
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