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Open Access 01-06-2018

Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life

Authors: Anouck Splinter, Lidwien A. Tjaden, Lotte Haverman, Brigitte Adams, Laure Collard, Karlien Cransberg, Maria van Dyck, Koen J. Van Hoeck, Bernd Hoppe, Linda Koster-Kamphuis, Marc R. Lilien, Ann Raes, Christina Taylan, Martha A. Grootenhuis, Jaap W. Groothoff

Published in: Quality of Life Research | Issue 6/2018

Abstract

Objectives

To assess health-related quality of life (HRQoL) across three renal replacement therapy modalities (preemptive transplant, non-preemptive transplant, and dialysis) in comparison with the healthy norm and other chronic health conditions, and to explore related patient factors.

Study design

All prevalent end-stage renal disease (ESRD) patients aged 8–18 years who spent at least 6 months on their current treatment modality in the Netherlands, Belgium, and part of Germany were approached to complete the Pediatric Quality of Life Inventory 4.0 (PedsQL™) questionnaire. We determined the differences between groups on PedsQL™ mean scores, the proportion of children with an impaired HRQoL (≥ 1 SD lower than the healthy norm), the proportion of problems on individual items of the PedsQL™, and the effect of time on current treatment. Linear regression models were used to explore determinants of HRQoL.

Results

192 out of 278 patients (20% preemptive transplant, 58% non-preemptive transplant, 22% dialysis) filled in the PedsQL™ (response rate 69%). Independent of treatment modality, patients had significantly lower mean scores and consequently higher proportions of impaired HRQoL on almost all domains compared to the healthy norm and other chronic health conditions. Patients with a preemptive transplant only reported higher scores on physical health compared to the other treatment modalities. Having comorbidities was the most important determinant associated with lower HRQoL scores.

Conclusion

Dialysis and renal transplantation both have a severe impact on the HRQoL of children with ESRD. Physicians should be aware of this continuous burden. Furthermore, to develop tailored interventions for children with ESRD, qualitative studies are needed to gain more insight in the determinants of HRQoL in the different treatment modalities.

Liem, Y. S., & Weimar, W. (2009). Early living-donor kidney transplantation: A review of the associated survival benefit. Transplantation, 87(3), 317–318. https://doi.org/10.1097/TP.0b013e3181952710.CrossRefPubMed

Groothoff, J. W., Offringa, M., Van Eck-Smit, B. L., Gruppen, M. P., Van De Kar, N. J., Wolff, E. D., et al. (2003). Severe bone disease and low bone mineral density after juvenile renal failure. Kidney International, 63(1), 266–275. https://doi.org/10.1046/j.1523-1755.2003.00727.x.CrossRefPubMed

Gruppen, M. P., Groothoff, J. W., Prins, M., van der Wouw, P., Offringa, M., Bos, W. J., et al. (2003). Cardiac disease in young adult patients with end-stage renal disease since childhood: A Dutch cohort study. Kidney International, 63(3), 1058–1065. https://doi.org/10.1046/j.1523-1755.2003.00814.x.CrossRefPubMed

Amaral, S., Sayed, B. A., Kutner, N., & Patzer, R. E. (2016). Preemptive kidney transplantation is associated with survival benefits among pediatric patients with end-stage renal disease. Kidney International, 90(5), 1100–1108. https://doi.org/10.1016/j.kint.2016.07.028.CrossRefPubMedPubMedCentral

Kasiske, B. L., Cangro, C. B., Hariharan, S., Hricik, D. E., Kerman, R. H., Roth, D., et al. (2001). The evaluation of renal transplantation candidates: Clinical practice guidelines. American Journal of Transplantation, 1(Suppl 2), 3–95.PubMed

Goldstein, S. L., Gerson, A. C., & Furth, S. (2007). Health-related quality of life for children with chronic kidney disease. Advances in Chronic Kidney Disease, 14(4), 364–369. https://doi.org/10.1053/j.ackd.2007.07.006.CrossRefPubMed

Tjaden, L., Tong, A., Henning, P., Groothoff, J., & Craig, J. C. (2012). Children’s experiences of dialysis: A systematic review of qualitative studies. Archives of Disease in Childhood, 97(5), 395–402. https://doi.org/10.1136/archdischild-2011-300639.CrossRefPubMed

Buyan, N., Turkmen, M. A., Bilge, I., Baskin, E., Haberal, M., Bilginer, Y., et al. (2010). Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatric Nephrology, 25(8), 1487–1496. https://doi.org/10.1007/s00467-010-1486-1.CrossRefPubMed

Goldstein, S. L., Graham, N., Burwinkle, T., Warady, B., Farrah, R., & Varni, J. W. (2006). Health-related quality of life in pediatric patients with ESRD. Pediatric Nephrology, 21(6), 846–850. https://doi.org/10.1007/s00467-006-0081-y.CrossRefPubMed

10.

Heath, J., Mackinlay, D., Watson, A. R., Hames, A., Wirz, L., Scott, S., et al. (2011). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology, 26(5), 767–773. https://doi.org/10.1007/s00467-011-1784-2.CrossRefPubMed

11.

Marciano, R. C., Soares, C. M., Diniz, J. S., Lima, E. M., Silva, J. M., Canhestro, M. R., et al. (2011). Behavioral disorders and low quality of life in children and adolescents with chronic kidney disease. Pediatric Nephrology, 26(2), 281–290. https://doi.org/10.1007/s00467-010-1683-y.CrossRefPubMed

12.

McKenna, A. M., Keating, L. E., Vigneux, A., Stevens, S., Williams, A., & Geary, D. F. (2006). Quality of life in children with chronic kidney disease-patient and caregiver assessments. Nephrology Dialysis Transplantation, 21(7), 1899–1905. https://doi.org/10.1093/ndt/gfl091.CrossRef

13.

Tromp, W. F., van der Lee, J. H., Offringa, M., Bouts, A. H., Collard, L., Cransberg, K., et al. (2011). Lessons learned from efforts to improve the quality of care in children with end-stage renal disease in the Netherlands and Belgium. Archives of Disease in Childhood, 96(12), 1093–1096. https://doi.org/10.1136/adc.2010.208348.CrossRefPubMed

14.

Schoenmaker, N. J., Haverman, L., Tromp, W. F., van der Lee, J. H., Offringa, M., Adams, B., et al. (2014). Children of non-Western origin with end-stage renal disease in the Netherlands, Belgium and a part of Germany have impaired health-related quality of life compared with Western children. Nephrology Dialysis Transplantation, 29(2), 448–457. https://doi.org/10.1093/ndt/gft436.CrossRef

15.

Schwimmer, J. B., Burwinkle, T. M., & Varni, J. W. (2003). Health-related quality of life of severely obese children and adolescents. JAMA, 289(14), 1813–1819. https://doi.org/10.1001/jama.289.14.1813.CrossRefPubMed

16.

Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.CrossRefPubMed

17.

Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 43. https://doi.org/10.1186/1477-7525-5-43.CrossRefPubMedPubMedCentral

18.

Engelen, V., Haentjens, M. M., Detmar, S. B., Koopman, H. M., & Grootenhuis, M. A. (2009). Health related quality of life of Dutch children: Psychometric properties of the PedsQL in the Netherlands. BMC Pediatrics, 9, 68. https://doi.org/10.1186/1471-2431-9-68.CrossRefPubMedPubMedCentral

19.

Fujisawa, M., Ichikawa, Y., Yoshiya, K., Isotani, S., Higuchi, A., Nagano, S., et al. (2000). Assessment of health-related quality of life in renal transplant and hemodialysis patients using the SF-36 health survey. Urology, 56(2), 201–206.CrossRefPubMed

20.

Kovacs, A. Z., Molnar, M. Z., Szeifert, L., Ambrus, C., Molnar-Varga, M., Szentkiralyi, A., et al. (2011). Sleep disorders, depressive symptoms and health-related quality of life—a cross-sectional comparison between kidney transplant recipients and waitlisted patients on maintenance dialysis. Nephrology Dialysis Transplantation, 26(3), 1058–1065. https://doi.org/10.1093/ndt/gfq476.CrossRef

21.

Tjaden, L. A., Vogelzang, J., Jager, K. J., van Stralen, K. J., Maurice-Stam, H., Grootenhuis, M. A., et al. (2014). Long-term quality of life and social outcome of childhood end-stage renal disease. The Journal of Pediatrics, 165(2), 336–342. (e331) https://doi.org/10.1016/j.jpeds.2014.04.013.CrossRefPubMed

22.

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(2), 249–256. https://doi.org/10.1111/j.1399-3046.2009.01214.x.CrossRefPubMed

23.

Harwood, L., & Johnson, B. (1999). Weighing risks and taking chances: Adolescents’ experiences of the regimen after renal transplantation. ANNA Journal, 26(1), 17–21 (discussion 22–13).PubMed

24.

Sprangers, M. A., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine, 48(11), 1507–1515.CrossRef

25.

Goldstein, S. L., Graham, N., Warady, B. A., Seikaly, M., McDonald, R., Burwinkle, T. M., 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(2), 285–297. https://doi.org/10.1053/j.ajkd.2007.09.021.CrossRefPubMed

26.

Goldstein, S. L., Rosburg, N. M., Warady, B. A., Seikaly, M., McDonald, R., Limbers, C., et al. (2009). Pediatric end stage renal disease health-related quality of life differs by modality: A PedsQL ESRD analysis. Pediatric Nephrology, 24(8), 1553–1560. https://doi.org/10.1007/s00467-009-1174-1.CrossRefPubMed

27.

Park, K. S., Hwang, Y. J., Cho, M. H., Ko, C. W., Ha, I. S., Kang, H. G., et al. (2012). Quality of life in children with end-stage renal disease based on a PedsQL ESRD module. Pediatric Nephrology, 27(12), 2293–2300. https://doi.org/10.1007/s00467-012-2262-1 CrossRefPubMed

28.

Van Manen, J. G., Korevaar, J. C., Dekker, F. W., Boeschoten, E. W., Bossuyt, P. M., & Krediet, R. T. (2003). Adjustment for comorbidity in studies on health status in ESRD patients: Which comorbidity index to use? Journal of the American Society of Nephrology, 14(2), 478–485.CrossRefPubMed

29.

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(2), 285–293. https://doi.org/10.1007/s00467-012-2313-7.CrossRefPubMed

30.

Stam, H., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2006). Quality of life and current coping in young adult survivors of childhood cancer: Positive expectations about the further course of the disease were correlated with better quality of life. Psychooncology, 15(1), 31–43. https://doi.org/10.1002/pon.920.CrossRefPubMed

31.

Bell, L. E., Bartosh, S. M., Davis, C. L., Dobbels, F., Al-Uzri, A., Lotstein, D., et al. (2008). Adolescent transition to adult care in solid organ transplantation: A consensus conference report. American Journal of Transplantation, 8(11), 2230–2242. https://doi.org/10.1111/j.1600-6143.2008.02415.x.CrossRefPubMed

32.

Simons, L. E., McCormick, M. L., Mee, L. L., & Blount, R. L. (2009). Parent and patient perspectives on barriers to medication adherence in adolescent transplant recipients. Pediatric Transplantation, 13(3), 338–347. https://doi.org/10.1111/j.1399-3046.2008.00940.x.CrossRefPubMed

Title: Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life
Authors: Anouck Splinter
Lidwien A. Tjaden
Lotte Haverman
Brigitte Adams
Laure Collard
Karlien Cransberg
Maria van Dyck
Koen J. Van Hoeck
Bernd Hoppe
Linda Koster-Kamphuis
Marc R. Lilien
Ann Raes
Christina Taylan
Martha A. Grootenhuis
Jaap W. Groothoff
Publication date: 01-06-2018
Publisher: Springer International Publishing
Published in: Quality of Life Research / Issue 6/2018
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-018-1789-4

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life

Abstract

Objectives

Study design

Results

Conclusion

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Objectives

Study design

Results

Conclusion

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