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Quality of Life Research

Erschienen in:

27.05.2017

Measurement of quality of life and attitudes towards illness in children and young people with chronic kidney disease

verfasst von: Jennifer Heath, Paul Norman, Martin Christian, Alan Watson

Erschienen in: Quality of Life Research | Ausgabe 9/2017

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Abstract

Purpose

Chronic kidney disease (CKD) can place restrictions upon biopsychosocial development in children; consequently, assessment of self-reported quality of life (QoL) is important in patient evaluations. This research aimed to evaluate a generic and renal-specific self-report QoL scale, assess children’s attitudes towards living with CKD and propose an appropriate tool for future individual clinical use or departmental audit.

Methods

Seventy-one children (41 male, 30 female; mean age = 13.60 years, range = 6.00–18.96) with CKD completed the Generic Children’s QoL Measure (GCQ), PedsQL 3.0 End Stage Renal Disease Module (PedsQL) and Child Attitude Toward Illness Scale (CATIS). Descriptive and cross-sectional analyses were performed, along with an examination of associations between scores on each measure.

Results

The mean GCQ score for patients was comparable with normative data (p = 0.27). Generic QoL, disease-specific QoL and attitudes towards CKD did not vary by CKD stage, age, time since diagnosis or duration of current treatment. Gender was not associated with QoL, although males had more negative CATIS scores than females (p < 0.05). Pre-emptive transplant patients had more positive GCQ and PedsQL scores (p < 0.05 for each), but there was no relationship between treatment and CATIS scores. Scores on all scales were moderately correlated (r = 0.35–0.59), suggesting that clinicians may choose the most appropriate measure for assessment of psychological/psychosocial functioning based on clinical judgement.

Conclusions

This study further confirmed that using child self-reported QoL measures is possible and may help psychosocial teams to individualise work. The GCQ is simple and convenient, and could be used as an annual screening tool to facilitate discussion of QoL with children and young people. Further work is necessary before such things as cut-off scores can be recommended.

The National Service Framework for Renal Services classification divides CKD into five stages defined by glomerular filtration rate. State 5 is also known as End-Stage Renal Disease (National Institute for Clinical Excellence, 2008).

McDonald, S. P., & Craig, J. C. (2004). Long-term survival of children with end-stage renal disease. New England Journal of Medicine, 350, 2654–2662. doi:10.1056/NEJMoa031643.CrossRef

Neul, S. K., Minard, C. G., Currier, H., & Goldstein, S. L. (2013). Health-related quality of life functioning over a 2-year period in children with end stage renal disease. Pediatric Nephrology, 28, 285–293. doi:10.1007/s00467-012-2313-7.CrossRefPubMed

Wallander, J. L., & Varni, J. W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29–46.CrossRefPubMed

Newacheck, P. W., & Halfon, N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Public Health Association, 88, 610–617. doi:10.2105/AJPH.88.4.610.CrossRef

Watson, A. R. (2014). Psychosocial support for children and families requiring renal replacement therapy. Pediatric Nephrology, 29, 1169–1174. doi:10.1007/s00467-013-2582-9.CrossRefPubMed

Heath, J., MacKinlay, D., Watson, A. R., et al. (2011). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology, 26, 767–773. doi:10.1007/s00467-011-1784-2.CrossRefPubMed

Stam, H., Hartman, E. E., Deurloo, J. A., Groothoff, J., & Grootenhuis, M. A. (2006). Young Adult Patients with a history of pediatric disease: Impact on course of life and transition into adulthood. Journal of Adolescent Health, 39, 4–13.CrossRef

Maxwell, H., MacKinlay, D., & Watson, A. R. (2009). Quality of life or health status in children with chronic kidney disease. Pediatric Nephrology, 25, 1191–1192. doi:10.1007/s00467-009-1332-5.CrossRefPubMed

Murphy, L. B. (1974). Coping, vulnerability, and resilience in childhood. In G. V. Coelho, D. A. Hamburg, & J. E. Adams (Eds.), Coping and adaptation (pp. 69–100). New York: Basic Books.

10.

Austin, J. K., & Huberty, T. J. (1993). Development of the child attitude toward illness scale. Journal of Pediatric Psychology, 18, 467–480. doi:10.1093/jpepsy/18.4.467.CrossRefPubMed

11.

Borgers N, Hox JJ (2000) Reliability of responses in questionnaire research with children. In Fifth International Conference on logic and Methodology held in Cologne, Germany. http://joophox.net/papers/p021704.pdf.

12.

Campbell, A. (1976). Subjective measures of well-being. American Psychologist, 31, 117–124. doi:10.1037/0003-066X.31.2.117.CrossRef

13.

Taylor, R. M., Wray, J., & Gibson, F. (2010). Measuring quality of life in children and young people after transplantation: methodological considerations. Pediatric Transplantation, 14, 445–458. doi:10.1111/j.1399-3046.2010.01316.x.CrossRefPubMed

14.

Fayers, P. M., & Machin, D. (2000). Quality of life: Assessment, analysis and interpretation. New York: Wiley.CrossRef

15.

Spilker, B. (1996). Quality of life and pharmacoeconomics in clinical trials. Philadelphia: Lippincott-Raven.

16.

Varni, J. W., Seid, M., & Kurtin, P. S. (1999). Pediatric health-related quality of life measurement technology: A guide for health care decision makers. Journal of Clinical Outcomes Management, 6, 33–40.

17.

Al-Uzri, A., Matheson, M., Gipson, D. S., et al. (2013). The impact of short stature on health-related quality of life in children with chronic kidney disease. Journal of Pediatrics, 163(3), 736.e1–741.e1. doi:10.1016/j.jpeds.2013.03.016.CrossRef

18.

Lavigne, J. V., & Faier-Rouman, J. (1992). Psychological adjustment to pediatric physical disorders: A meta-analytic review. Journal of Pediatric Psychology, 17, 133–157.CrossRefPubMed

19.

Houtzager, B. A., Grootenhuis, M. A., & Last, B. F. (1999). Adjustment of siblings to childhood cancer: A literature review. Supportive Care in Cancer, 7, 302–32017.CrossRefPubMed

20.

Collier, J., & MacKinlay, D. (2008). Generic children’s quality of life measure (GCQ) professional manual. Oxford: Hogrefe Ltd.

21.

Goldstein, S. L., Graham, N., Warady, B. A., et al. (2008). Measuring health-related quality of life in children with ESRD: performance of the generic and ESRD-specific instrument of the pediatric quality of life inventory (PedsQL). American Journal of Kidney Diseases, 51, 285–297. doi:10.1053/j.ajkd.2007.09.021.CrossRefPubMed

22.

Collier, J., Mackinlay, D., & Phillips, D. (2000). Norm values for the generic children’s quality of life measure (GCQ) from a large school-based sample. Quality of Life Research, 9, 617–623. doi:10.1023/A:1008915700210.CrossRefPubMed

23.

University of Nottingham. School of Human Development. Division of Child Health, Children’s Quality of Life: United Kingdom Normative Data for the Generic Children’s Quality of Life Measure (GCQ), 1997–1998. Colchester: UK Data Archive. March 2013. SN 4412.

24.

Bellin, M. H., Zabel, T. A., Dicianno, B. E., Levey, E., Garver, K., Linroth, R., et al. (2010). Correlates of depressive and anxiety symptoms in young adults with spina bifida. Journal of Paediatric Psychology, 35, 778–789. doi:10.1093/jpepsy/jsp094.CrossRef

25.

LeBovidge, J. S., Strauch, H., Kalish, L. A., & Schneider, L. C. (2009). Assessment of psychological distress among children and adolescents with food allergy. Journal of Allergy and Clinical Immunology, 124, 1282–1288. doi:10.1016/j.jaci.2009.08.045.CrossRef

26.

LeBovidge, J. S., Lavigne, J. V., & Miller, M. L. (2005). Adjustment to chronic arthritis of childhood: The roles of illness-related stress and attitude toward illness. Journal of Pediatric Psychology, 30, 273–286. doi:10.1093/jpepsy/jsi037.CrossRefPubMed

27.

Ryan, J. L., Ramsey, R. R., Fedele, D. A., Wagner, J. L., Smith, G., & Chaney, J. M. (2012). Exploration of age and sex differences in depressive symptoms and illness attitudes for youth with epilepsy and juvenile rheumatic disease. Journal of Child Neurology. doi:10.1177/0883073811431109.CrossRefPubMed

28.

Buran, C. F., Sawin, K. J., Brei, T. J., & Fastenau, P. S. (2004). Adolescents with myelomeningocele: Activities, beliefs, expectations, and perceptions. Developmental Medicine and Child Neurology, 46, 244–252.CrossRefPubMed

29.

Wolańczyk, T., Banasikowska, I., Zlotkowski, P., Wińniewski, A., & Paruszkiewicz, G. (2002). Attitudes of enuretic children towards their illness. Acta Paediatrica, 91, 844–848. doi:10.1111/j.1651-2227.2002.tb03338.x.CrossRefPubMed

30.

Iobst, E. A., Nabors, L. A., Brunner, H. I., & Precht, B. (2007). Pain, fatigue, family functioning, and attitude toward illness in children with juvenile rheumatic diseases. Journal of Developmental and Physical Disabilities, 19, 135–144. doi:10.1007/s10882-006-9028-2.CrossRef

31.

Nabors, L., McGrady, M. E., & Kichler, J. (2010). Children’s attitudes toward their diabetes, locus of control, and HbA1c levels. Journal of Developmental and Physical Disabilities, 22, 475–484. doi:10.1007/s10882-009-9183-3.CrossRef

32.

Kasiske, B. L., Snyder, J. J., Matas, A. J., Ellison, M. D., Gill, J. S., & Kausz, A. T. (2002). Pre-emptive kidney transplantation: The advantage and the advantaged. Journal of the American Society of Nephrology, 13, 1358–1364. doi:10.1097/01.ASN.0000013295.11876.C9.CrossRefPubMed

33.

Jirojanakul, P., Skevington, S. M., & Hudson, J. (2003). Predicting young children’s quality of life. Social Science and Medicine, 57, 1277–1288. doi:10.1016/S0277-9536(02)00507-5.CrossRefPubMed

34.

Fournet, D. L., Wilson, K. L., & Wallander, J. L. (1998). Growing or just getting along? Technical and adaptive competence in coping among adolescents. Child Development, 69, 1129–1144.CrossRefPubMed

35.

Tjaden, L., Vogelzang, J., Van Stralen, K. J., Jager, K. J., Grootenhuis, M. A., Groothoff, J. W. (2013). Long-term quality of life and social functioning of adult survivors of renal replacement therapy since childhood. In Presentation at the 44th Annual EWOPA-renal child Conference, Rotterdam.

36.

Andersen, R. E., Crespo, C. J., Bartlett, S. J., Cheskin, L. J., & Pratt, M. (1998). Relationship of physical activity and television watching with body weight and level of fatness among children: results from the Third National Health and Nutrition Examination Survey. JAMA, 279, 938–942. doi:10.1001/jama.279.12.938.CrossRefPubMed

37.

Austin, J. K., Patterson, J. M., & Huberty, T. J. (1991). Development of the coping health inventory for children. Journal of Paediatric Nursing, 6, 166–174.

38.

Patterson, J. M. (1988). Chronic illness in children and the impact on families. In C. S. Chilman, E. W. Nunnally, & F. M. Cox (Eds.), Chronic illness and disability (pp. 69–107). Newbury Park, CA: Sage.

39.

Euler, H. A. (2003). A psychologist’s look at health-related quality-of-life assessment in children. In G. M. O’Donoghue & S. Archbold (Eds.), Measuring the immeasurable? Proceedings of a Conference on Quality of Life in Deaf Children (pp. 45–53). Oxford: Hughes associates.

40.

Riano-Galan, I., Malaga, S., Rajmil, L., Ariceta, G., Navarro, M., Loris, C., et al. (2009). Quality of life of adolescents with end-stage renal disease and kidney transplant. Pediatric Nephrology, 24, 1561–1568. doi:10.1007/s00467-009-1175-0.CrossRefPubMed

41.

Anthony, S. J., Hebert, D., Todd, L., Korus, M., Langlois, V., Pool, R., et al. (2010). Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatric Transplantation, 14, 249–256.CrossRefPubMed

42.

Gerson, A. C., Wentz, A., Abraham, A. G., Mendley, S. R., Hooper, S. R., Butler, R. W., et al. (2010). Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics, 125, e349–e357. doi:10.1542/peds.2009-0085.CrossRefPubMed

Titel: Measurement of quality of life and attitudes towards illness in children and young people with chronic kidney disease
verfasst von: Jennifer Heath
Paul Norman
Martin Christian
Alan Watson
Publikationsdatum: 27.05.2017
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 9/2017
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-017-1605-6

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

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