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Gepubliceerd in:

14-02-2017

Changes in health-related quality of life over a 1-year follow-up period in children with inflammatory bowel disease

Auteurs: Helene Werner, Markus A. Landolt, Patrick Buehr, Rebekka Koller, Andreas Nydegger, Johannes Spalinger, Klaas Heyland, Susanne Schibli, Christian P. Braegger, The Swiss IBD Cohort Study Group

Gepubliceerd in: Quality of Life Research | Uitgave 6/2017

Abstract

Purpose

Little is known about disease-specific health-related quality-of-life (HRQoL) changes over time in paediatric patients with inflammatory bowel disease (IBD), and about their associations with baseline medical characteristics.

Methods

In this study, 153 paediatric patients with IBD from the multicentre prospective Swiss IBD cohort study were included at baseline. Of these, 90 patients were analysed at a 1-year follow-up. Medical data were extracted from hospital records, while HRQoL data were measured using the standardized, self-report disease-specific IMPACT-III questionnaire.

Results

The IBD diagnosis of the included children was made an average of 2.0 years before their baseline assessment. Over the 1-year follow-up period, a significant increase in overall HRQoL and in the HRQoL domain ‘physical functioning’ was evident. On multivariate analysis, overall HRQoL changes over time were predicted by baseline HRQoL, baseline disease activity, and disease activity changes over time. HRQoL improvements were significantly associated with decreases in physician-assessed disease activity. Children reporting a low baseline HRQoL and children with inactive or mildly-active disease experienced greater improvements.

Conclusions

Children with more severe baseline disease activity had the greatest risk for HRQoL deterioration over the 1-year follow-up period. However, among possible factors that might influence HRQoL changes over time, the child’s medical characteristics explained only a small proportion of their variability in our sample. We, therefore, recommend that researchers and clinicians focus on factors that are not incorporated within the multidimensional HRQoL concept if they seek to gain better insights into factors that influence HRQoL changes over time in children with IBD.

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Kelsen, J., & Baldassano, R. N. (2008). Inflammatory bowel disease: The difference between children and adults. Inflammatory Bowel Diseases, 14, 9–11. doi:10.1002/Ibd.20560.

Eaden, J. A., Abrams, K. R., & Mayberry, J. F. (2001). The risk of colorectal cancer in ulcerative colitis: A meta-analysis. Gut, 48(4), 526–535.CrossRefPubMedPubMedCentral

Mackner, L. M., Greenley, R. N., Szigethy, E., Herzer, M., Deer, K., & Hommel, K. A. (2013). Psychosocial issues in pediatric inflammatory bowel disease: Report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. Journal of Pediatric Gastroenterology and Nutrition, 56(4), 449–458. doi:10.1097/MPG.0b013e3182841263.CrossRefPubMedPubMedCentral

Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7(1), 79–92. doi:10.1111/j.1524-4733.2004.71273.x.CrossRefPubMed

Gallo, J., Grant, A., Otley, A. R., Orsi, M., MacIntyre, B., Gauvry, S., et al. (2014). Do parents and children agree? Quality-of-life assessment of children with inflammatory bowel disease and their parents. Journal of Pediatric Gastroenterology and Nutrition, 58(4), 481–485. doi:10.1097/Mpg.0000000000000236.CrossRefPubMed

Gray, W. N., Graef, D. M., Schuman, S. S., Janicke, D. M., & Hommel, K. A. (2013). Parenting stress in pediatric IBD: Relations with child psychopathology, family functioning, and disease severity. Journal of Developmental and Behavioral Pediatrics, 34(4), 237–244. doi:10.1097/Dbp.0b013e318290568a.CrossRefPubMedPubMedCentral

Hill, R. J., Lewindon, P. J., Muir, R., Grange, I., Connor, F. L., Ee, L. C., et al. (2010). Quality of life in children with Crohn disease. Journal of Pediatric Gastroenterology and Nutrition, 51(1), 35–40. doi:10.1097/MPG.0b013e3181c2c0ef.CrossRefPubMed

Marcus, S. B., Strople, J. A., Neighbors, K., Weissberg-Benchell, J., Nelson, S. P., Limbers, C., et al. (2009). Fatigue and health-related quality of life in pediatric inflammatory bowel disease. Clinical Gastroenterology and Hepatology, 7(5), 554–561. doi:10.1016/j.cgh.2009.01.022.CrossRefPubMed

Perrin, J. M., Kuhlthau, K., Chughtai, A., Romm, D., Kirschner, B. S., Ferry, G. D., et al. (2008). Measuring quality of life in pediatric patients with inflammatory bowel disease: Psychometric and clinical characteristics. Journal of pediatric gastroenterology and nutrition, 46(2), 164–171. doi:10.1097/MPG.0b013e31812f7f4e.CrossRefPubMedPubMedCentral

10.

Otley, A. R., Griffiths, A. M., Hale, S., Kugathasan, S., Pfefferkorn, M., Mezoff, A., et al. (2006). Health-related quality of life in the first year after a diagnosis of pediatric inflammatory bowel disease. Inflammatory Bowel Diseases, 12(8), 684–691.CrossRefPubMed

11.

van der Zaag-Loonen, H. J., Grootenhuis, M. A., Last, B. F., & Derkx, H. H. (2004). Coping strategies and quality of life of adolescents with inflammatory bowel disease. Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation, 13(5), 1011–1019.CrossRef

12.

Pittet, V., Juillerat, P., Mottet, C., Felley, C., Ballabeni, P., Burnand, B., et al. (2009). Cohort profile: The Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS). International Journal of Epidemiology, 38(4), 922–931. doi:10.1093/ije/dyn180.CrossRefPubMed

13.

Lennard-Jones, J. E. (1989). Classification of inflammatory bowel disease. Scandinavian Journal of Gastroenterology Supplement, 170, 2–6. (discussion 16–19).CrossRefPubMed

14.

Turner, D., Otley, A. R., Mack, D., Hyams, J., De Bruijne, J., Uusoue, K., et al (2007). Development, validation, and evaluation of a pediatric ulcerative colitis activity index: A prospective multicenter study. Gastroenterology, 133(2), 423–432. doi:10.1053/j.gastro.2007.05.029.CrossRefPubMed

15.

Kappelman, M. D., Crandall, W. V., Colletti, R. B., Goudie, A., Leibowitz, I. H., Duffy, L., et al. (2011). Short pediatric Crohn’s disease activity index for quality improvement and observational research. Inflammatory Bowel Diseases, 17(1), 112–117. doi:10.1002/ibd.21452.CrossRefPubMed

16.

Griffiths, A. M., Nicholas, D., Smith, C., Munk, M., Stephens, D., Durno, C., et al. (1999). Development of a quality-of-life index for pediatric inflammatory bowel disease: Dealing with differences related to age and IBD type. Journal of pediatric gastroenterology and nutrition, 28(4), S46–S52.CrossRefPubMed

17.

Otley, A., Smith, C., Nicholas, D., Munk, M., Avolio, J., Sherman, P. M., et al. (2002). The IMPACT questionnaire: A valid measure of health-related quality of life in pediatric inflammatory bowel disease. Journal of pediatric gastroenterology and nutrition, 35(4), 557–563.CrossRefPubMed

18.

Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M. B. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, 25(24), 3186–3191. doi:10.1097/00007632-200012150-00014.CrossRefPubMed

19.

Werner, H., Landolt, M. A., Buehr, P., Koller, R., Nydegger, A., Spalinger, J., et al. (2014). Validation of the IMPACT-III quality of life questionnaire in Swiss children with inflammatory bowel disease. Journal of Crohn’s & Colitis, 8(7), 641–648. doi:10.1016/j.crohns.2013.11.025.CrossRef

20.

Cohen, J. (1992). A power primer. Psychological Bulletin, 112(1), 155–159. doi:10.1037/0033-2909.112.1.155.CrossRefPubMed

21.

Field, A. (2009). Discovering statistics using SPSS. London: Sage Publications.

22.

Rubin, D. B. (1987). Multiple imputation for nonresponse in surveys. New York: Wiley.CrossRef

23.

van Buuren, S., & Groothuis-Oudshoorn, K. (2011). mice: Multivariate Imputation by Chained Equations in R. Journal of Statistical Software, 45(3), 1–67.CrossRef

24.

Van Buuren, S., Brand, J. P. L., Groothuis-Oudshoorn, C. G. M., & Rubin, D. B. (2006). Fully conditional specification in multivariate imputation. Journal of Statistical Computation and Simulation, 76(12), 1049–1064. doi:10.1080/10629360600810434.CrossRef

25.

Altman, D. G., & Bland, J. M. (1995). Statistics notes—absence of evidence is not evidence of absence. British Medical Journal, 311(7003), 485–485.CrossRefPubMedPubMedCentral

26.

Kazak, A. E., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Alderfer, M. A., & Rourke, M. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355. doi:10.1093/jpepsy/jsj054.CrossRefPubMed

27.

Price, J., Kassam-Adams, N., Alderfer, M. A., Christofferson, J., & Kazak, A. E. (2016). Systematic review: A reevaluation and update of the integrative (Trajectory) model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 41(1), 86–97. doi:10.1093/jpepsy/jsv074.CrossRefPubMed

28.

Hayes, R. J. (1988). Methods for assessing whether change depends on initial value. Statistics in Medicine, 7(9), 915–927.CrossRefPubMed

29.

Tu, Y. K., & Gilthorpe, M. S. (2007). Revisiting the relation between change and initial value: A review and evaluation. Statistics in Medicine, 26(16), 3205–3206. doi:10.1002/sim.2538.CrossRef

30.

Bland, J. M., & Altman, D. G. (1994). Statistics notes. 2. Regression towards the mean. British Medical Journal, 308(6942), 1499–1499.CrossRefPubMedPubMedCentral

31.

Bland, J. M., & Altman, D. G. (1994). Some examples of regression towards the mean. BMJ (Clinical research ed.), 309(6957), 780.CrossRef

32.

Faul, F., Erdfelder, E., Lang, A. G., & Buchner, A. (2007). G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behavior Research Methods, 39(2), 175–191. doi:10.3758/Bf03193146.CrossRefPubMed

33.

Hyams, J. S., Ferry, G. D., Mandel, F. S., Gryboski, J. D., Kibort, P. M., Kirschner, B. S., et al. (1991). Development and validation of a pediatric Crohns-disease activity index. Journal of Pediatric Gastroenterology and Nutrition, 12(4), 439–447.CrossRefPubMed

34.

Turner, D., Hyams, J., Markowitz, J., Lerer, T., Mack, D. R., Evans, J., et al. (2009). Appraisal of the pediatric ulcerative colitis activity index (PUCAI). Inflammatory Bowel Diseases, 15(8), 1218–1223. doi:10.1002/ibd.20867.CrossRefPubMed

Titel: Changes in health-related quality of life over a 1-year follow-up period in children with inflammatory bowel disease
Auteurs: Helene Werner
Markus A. Landolt
Patrick Buehr
Rebekka Koller
Andreas Nydegger
Johannes Spalinger
Klaas Heyland
Susanne Schibli
Christian P. Braegger
The Swiss IBD Cohort Study Group
Publicatiedatum: 14-02-2017
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 6/2017
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-017-1513-9

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Abstract

Purpose

Methods

Results

Conclusions

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