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.
Similar content being viewed by others
References
Andreoli SP (2009) Acute kidney injury in children. Pediatr Nephrol 24:253–263
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
Spinale JM, Ruebner RL, Copelovitch L, Kaplan BS (2013) Long-term outcomes of Shiga toxin hemolytic uremic syndrome. Pediatr Nephrol 28:2097–2105
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
Spinale JM, Ruebner RL, Kaplan BS, Copelovitch L (2013) Update on Streptococcus pneumoniae associated hemolytic uremic syndrome. Curr Opin Pediatr 25:203–208
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
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
de Ridder D, Geenen R, Kuijer R, van Middendorp H (2008) Psychological adjustment to chronic disease. Lancet 372:246–255
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
American Psychiatric Association (APA) (1994) The diagnostic and statistical manual of mental disorders. APA, Washington DC
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
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
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
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
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
Fekkes M, Bruil J, Vogels T (2004) TAPQOL-manual. Leiden Center for Child Health and Pediatrics LUMC-TNO, Leiden
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
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
Achenbach T (1991) Manual for the child behavior checklist/4-18. Department of Psychiatry, University of Vermont Burlington
Achenbach T, Rescorla L (2000) Manual for the ASEBA preschool forms and profiles. Research Center for Children, Youth & Families, University of Vermont, Burlington
Arbeitsgruppe Deutsche Child Behavior Checklist (2002) Elternfragebogen für Klein- und Vorschulkinder (CBCL/1.5-5). Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik (KJFD), Cologne, Germany
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
Kovacs M (1985) The Children's Depression, Inventory (CDI). Psychopharmacol Bull 21:995–998
Stiensmeier-Pelster J, Schürmann M, Duda K (2000) Handanweisung. Depressions-Inventar für Kinder und Jugendliche. Hogrefe, Göttingen
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
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
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
Cohen AH (1988) Statistical power analysis for the bevahioral sciences. Lawrence Erlbaum Associates, Hillsdale
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
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
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
Author information
Authors and Affiliations
Corresponding author
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
About this article
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
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00467-016-3569-0