Skip to main content

Advertisement

Log in

Long-term health-related quality of life and psychological adjustment in children after haemolytic-uraemic syndrome

  • Original Article
  • Published:
Pediatric Nephrology Aims and scope Submit manuscript

Abstract

Background

In children after haemolytic-uraemic syndrome (HUS), little is known about long-term health-related quality of life (HRQoL) and psychological adjustment as defined by behavioural problems, depressive symptoms and post-traumatic stress symptoms.

Methods

Sixty-two paediatric patients with a history of HUS were included in this study. Medical data of the acute HUS episode were retrieved retrospectively from hospital records. Data on the clinical course at study investigation were assessed by clinical examination and laboratory evaluation. HRQoL and psychological adjustment data were measured by standardised, parent- and self-reported questionnaires.

Results

Haemolytic-uraemic syndrome was diagnosed at a mean of 6.5 years before the initiation of the study (standard deviation 2.9, range 0.1–15.7) years. Among the preschool children, parents reported that their child was less lively and energetic (HRQoL emotional dimension), while no increased behavioural problems were reported. In the school-age children, self- and proxy-reported HRQoL was well within or even above the norms, while increased total behavioural problems were found. The school-age children reported no increased depression scores. Also none of the children met the criteria for full or partial HUS-associated posttraumatic stress disorder.

Conclusions

Healthcare providers should be particularly alert to behavioural problems in school-age children with a history of HUS and to lower HRQoL in preschool children.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. Andreoli SP (2009) Acute kidney injury in children. Pediatr Nephrol 24:253–263

    Article  PubMed  Google Scholar 

  2. Schifferli A, von Vigier RO, Fontana M, Spartà G, Schmid H, Bianchetti MG, Rudin C, Unit SPS (2010) Hemolytic-uremic syndrome in Switzerland: a nationwide surveillance 1997-2003. Eur J Pediatr 169:591–598

    Article  PubMed  Google Scholar 

  3. Spinale JM, Ruebner RL, Copelovitch L, Kaplan BS (2013) Long-term outcomes of Shiga toxin hemolytic uremic syndrome. Pediatr Nephrol 28:2097–2105

    Article  PubMed  Google Scholar 

  4. Rosales A, Hofer J, Zimmerhackl L-B, Jungraithmayr TC, Riedl M, Giner T, Strasak A, Orth-Höller D, Würzner R, Karch H, German-Austrian HUS Study Group (2012) Need for long-term follow-up in enterohemorrhagic Escherichia coli-associated hemolytic uremic syndrome due to late-emerging sequelae. Clin Infect Dis 54:1413–1421

    Article  PubMed  Google Scholar 

  5. Spinale JM, Ruebner RL, Kaplan BS, Copelovitch L (2013) Update on Streptococcus pneumoniae associated hemolytic uremic syndrome. Curr Opin Pediatr 25:203–208

    Article  CAS  PubMed  Google Scholar 

  6. Fremeaux-Bacchi V, Fakhouri F, Garnier A, Bienaime F, Dragon-Durey M-A, Ngo S, Moulin B, Servais A, Provot F, Rostaing L, Burtey S, Niaudet P, Deschenes G, Lebranchu Y, Zuber J, Loirat C (2013) Genetics and outcome of atypical hemolytic uremic syndrome: a nationwide French series comparing children and adults. Clin J Am Soc Nephrol 8:554–562

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  7. Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK (2004) Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value Health 7:79–92

    Article  PubMed  Google Scholar 

  8. de Ridder D, Geenen R, Kuijer R, van Middendorp H (2008) Psychological adjustment to chronic disease. Lancet 372:246–255

    Article  PubMed  Google Scholar 

  9. Schlieper A, Orrbine E, Wells GA, Clulow M, McLaine PN, Rowe PC (1999) Neuropsychological sequelae of haemolytic uraemic syndrome. Investigators of the HUS Cognitive Study. Arch Dis Child 80:214–220

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Qamar IU, Ohali M, MacGregor DL, Wasson C, Krekewich K, Marcovitch S, Arbus GS (1996) Long-term neurological sequelae of hemolytic-uremic syndrome: a preliminary report. Pediatr Nephrol 10:504–506

    Article  CAS  PubMed  Google Scholar 

  11. Schlieper A, Rowe PC, Orrbine E, Zoubek M, Clark W, Wolfish N, McLaine PN (1992) Sequelae of haemolytic uraemic syndrome. Arch Dis Child 67:930–934

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  12. Lopes M, Ferraro A, Koch VH (2014) Health-related quality of life of children and adolescents with CKD stages 4-5 and their caregivers. Pediatr Nephrol 29:1239–1247

    Article  PubMed  Google Scholar 

  13. Kul M, Cengel Kultur E, Senses Dinc G, Bilginer Y, Uluc S, Baykan H (2013) Quality of life in children and adolescents with chronic kidney disease: a comparative study between different disease stages and treatment modalities. Turk J Pediatr 55:493–499

    PubMed  Google Scholar 

  14. Kilis-Pstrusinska K, Medynska A, Chmielewska IB, Grenda R, Kluska-Jozwiak A, Leszczynska B, Niedomagala J, Olszak-Szot I, Miklaszewska M, Szczepanska M, Tkaczyk M, Urzykowska A, Wasilewska A, Zachwieja K, Zajaczkowska M, Ziolkowska H, Zagozdzon I, Zwolinska D (2013) Perception of health-related quality of life in children with chronic kidney disease by the patients and their caregivers: Multicentre national study results. Qual Life Res 22:2889–2897

    Article  PubMed  PubMed Central  Google Scholar 

  15. Marciano RC, Soares CM, Diniz JS, Lima EM, Silva JM, Canhestro MR, Gazzinelli A, Melo CC, Dias CS, Simoes e Silva AC, Correa H, Oliveira EA (2011) Behavioral disorders and low quality of life in children and adolescents with chronic kidney disease. Pediatr Nephrol 26:281–290

    Article  PubMed  Google Scholar 

  16. Buyan N, Turkmen MA, Bilge I, Baskin E, Haberal M, Bilginer Y, Mir S, Emre S, Akman S, Ozkaya O, Fidan K, Alpay H, Kavukcu S, Sever L, Ozcakar ZB, Dogrucan N (2010) Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatr Nephrol 25:1487–1496

    Article  PubMed  Google Scholar 

  17. Gerson AC, Wentz A, Abraham AG, Mendley SR, Hooper SR, Butler RW, Gipson DS, Lande MB, Shinnar S, Moxey-Mims MM, Warady BA, Furth SL (2010) Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics 125:e349–357

    Article  PubMed  PubMed Central  Google Scholar 

  18. McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF (2006) Quality of life in children with chronic kidney disease - patient and caregiver assessments. Nephrol Dial Transpl 21:1899–1905

    Article  Google Scholar 

  19. Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW (2006) Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol 21:846–850

    Article  PubMed  Google Scholar 

  20. Kogon AJ, Vander Stoep A, Weiss NS, Smith J, Flynn JT, McCauley E (2013) Depression and its associated factors in pediatric chronic kidney disease. Pediatr Nephrol 28:1855–1861

    Article  PubMed  PubMed Central  Google Scholar 

  21. Hernandez E, Loza R, Vargas H, Jara M (2011) Depressive symptomatology in children and adolescents with chronic renal insufficiency undergoing chronic dialysis. Int J Nephrol 2011:798692. http://dx.doi.org/10.4061/2011/798692

    PubMed  PubMed Central  Google Scholar 

  22. Amr M, Bakr A, El Gilany AH, Hammad A, El-Refaey A, El-Mougy A (2009) Multi-method assessment of behavior adjustment in children with chronic kidney disease. Pediatr Nephrol 24:341–347

    Article  PubMed  Google Scholar 

  23. Hooper SR, Duquette PJ, Icard P, Wetherington CE, Harrell W, Gipson DS (2009) Social-behavioural functioning in paediatric chronic kidney disease. Child Care Health Dev 35:832–840

    Article  CAS  PubMed  Google Scholar 

  24. Bakr A, Amr M, Sarhan A, Hammad A, Ragab M, El-Refaey A, El-Mougy A (2007) Psychiatric disorders in children with chronic renal failure. Pediatr Nephrol 22:128–131

    Article  PubMed  Google Scholar 

  25. American Psychiatric Association (APA) (1994) The diagnostic and statistical manual of mental disorders. APA, Washington DC

    Google Scholar 

  26. Buder K, Latal B, Nef S, Neuhaus TJ, Laube GF, Spartà G (2015) Neurodevelopmental long-term outcome in children after hemolytic uremic syndrome. Pediatr Nephrol 30:503–513

    Article  PubMed  Google Scholar 

  27. Buder K, Werner H, Landolt MA, Neuhaus TJ, Laube GF, Spartà G (2016) Health-related quality of life and mental health in parents of children with hemolytic uremic syndrome. Pediatr Nephrol 31:923–932

    Article  PubMed  Google Scholar 

  28. Zipfel PF, Wolf G, John U, Kentouche K, Skerka C (2011) Novel developments in thrombotic microangiopathies: is there a common link between hemolytic uremic syndrome and thrombotic thrombocytic purpura? Pediatr Nephrol 26:1947–1956

    Article  PubMed  Google Scholar 

  29. Hogg RJ, Furth S, Lemley KV, Portman R, Schwartz GJ, Coresh J, Balk E, Lau J, Levin A, Kausz AT, Eknoyan G, Levey AS (2003) National Kidney Foundation's Kidney Disease Outcomes Quality Initiative clinical practice guidelines for chronic kidney disease in children and adolescents: evaluation, classification, and stratification. Pediatrics 111:1416–1421

    Article  PubMed  Google Scholar 

  30. Schwartz GJ, Munoz A, Schneider MF, Mak RH, Kaskel F, Warady BA, Furth SL (2009) New equations to estimate GFR in children with CKD. J Am Soc Nephrol 20:629–637

    Article  PubMed  PubMed Central  Google Scholar 

  31. Fekkes M, Bruil J, Vogels T (2004) TAPQOL-manual. Leiden Center for Child Health and Pediatrics LUMC-TNO, Leiden

    Google Scholar 

  32. Bisegger C, Cloetta B, Group TEK (2005) Kidscreen: Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität von Kindern und Jugendlichen. Manual der deutschsprachigen Versionen für die Schweiz. Abteiung für Sozial- und Präventivmedzin der Universität, Bern

  33. Ravens-Sieberer U, Auquier P, Erhart M, Gosch A, Rajmil L, Bruil J, Power M, Duer W, Cloetta B, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J (2007) The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Qual Life Res 16:1347–1356

    Article  PubMed  Google Scholar 

  34. Achenbach T (1991) Manual for the child behavior checklist/4-18. Department of Psychiatry, University of Vermont Burlington

  35. Achenbach T, Rescorla L (2000) Manual for the ASEBA preschool forms and profiles. Research Center for Children, Youth & Families, University of Vermont, Burlington

  36. Arbeitsgruppe Deutsche Child Behavior Checklist (2002) Elternfragebogen für Klein- und Vorschulkinder (CBCL/1.5-5). Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik (KJFD), Cologne, Germany

  37. Steinhausen H, Winkler Metzke C, Kannenberg R (1996) Handbuch: Elternfragebogen über das Verhalten von Kindern und Jugendlichen. Die Zürcher Ergebnisse zur deutschen Fassung der Child Behavior Checklist (CBCL). Psychiatrische Universitäts-Poliklinik für Kinder und Jugendliche, Zurich

  38. Kovacs M (1985) The Children's Depression, Inventory (CDI). Psychopharmacol Bull 21:995–998

    CAS  PubMed  Google Scholar 

  39. Stiensmeier-Pelster J, Schürmann M, Duda K (2000) Handanweisung. Depressions-Inventar für Kinder und Jugendliche. Hogrefe, Göttingen

    Google Scholar 

  40. Landolt M, Schnyder U, Maier T, Schoenbucher V, Mohler-Kuo M (2013) Trauma exposure and posttraumatic stress disorder in adolescents: a national survey in Switzerland. J Trauma Stress 26:209–216

    Article  PubMed  Google Scholar 

  41. Steinberg AM, Brymer MJ, Kim S, Briggs EC, Ippen CG, Ostrowski SA, Gully KJ, Pynoos RS (2013) Psychometric properties of the UCLA PTSD reaction index: part I. J Trauma Stress 26:1–9

    Article  PubMed  Google Scholar 

  42. Largo RH, Pfister D, Molinari L, Kundu S, Lipp A, Duc G (1989) Significance of prenatal, perinatal and postnatal factors in the development of AGA preterm infants at five to seven years. Dev Med Child Neurol 31:440–456

    Article  CAS  PubMed  Google Scholar 

  43. Cohen AH (1988) Statistical power analysis for the bevahioral sciences. Lawrence Erlbaum Associates, Hillsdale

    Google Scholar 

  44. Askenazi DJ, Feig DI, Graham NM, Hui-Stickle S, Goldstein SL (2006) 3-5 Year longitudinal follow-up of pediatric patients after acute renal failure. Kidney Int 69:184–189

    Article  CAS  PubMed  Google Scholar 

  45. Faul F, Erdfelder E, Lang AG, Buchner A (2007) G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods 39:175–191

    Article  PubMed  Google Scholar 

  46. Etling P (2003) Überprüfung der psychometrischen Parameter von CBCL11/2-5 und C-TRF an einer deutschen Stichprobe. Johann Wolfgang Goethe-Universitätsklinik, Frankfurt am Main

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Giuseppina Spartà.

Ethics declarations

Funding sources

The study was supported by the “Erika Bär-Spycher” Foundation and by the “Kinder für Kinder” Foundation.

Conflict of interest

The authors declare that there is no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Additional information

H.W. and K.B. contributed equally to this article.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Werner, H., Buder, K., Landolt, M.A. et al. Long-term health-related quality of life and psychological adjustment in children after haemolytic-uraemic syndrome. Pediatr Nephrol 32, 869–878 (2017). https://doi.org/10.1007/s00467-016-3569-0

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00467-016-3569-0

Keywords

Navigation