Skip to main content
SpringerLink
Log in

Long-term health-related quality of life in survivors of meningococcal septic shock in childhood and their parents

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Objective

To assess long-term health-related quality of life (HR-QoL) in patients who survived meningococcal septic shock in childhood, and their parents.

Patients and methods

All consecutive patients with meningococcal septic shock requiring intensive care treatment between 1988 and 2001, and their parents. HR-QoL was assessed by the Child Health Questionnaire and the SF-36. Scores were compared with reference data of Dutch general population samples. Lower scores indicated poorer HR-QoL, higher scores more favourable HR-QoL.

Results

One hundred and forty-five patients (response rate 82%) agreed to participate (age PICU admission 3.5 years; follow-up interval 10 years; age follow-up 14.6 years (all medians)). In patients, regardless of age and of patient- versus parent-report, significantly lower scores were found mainly on physical (physical functioning, general health perception) domains and/or physical summary score. In patients <18 years, according to parent-reports, significantly lower scores were also found on psychosocial HR-QoL domains, whereas in patients ≥12 years, according to patients themselves, significantly higher scores were found on psychosocial domains. As to parents themselves, we found significantly higher scores on the majority of HR-QoL scales (both physical and psychosocial).

Conclusions

In patients who survived meningococcal septic shock in childhood significantly lower HR-QoL scores were found on the physical domains. This could indicate that the patient’s disease episode and present health status had a negative impact on their present physical HR-QoL. Overall long-term HR-QoL in parents was significantly higher.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Abbreviations

PICU:

Paediatric intensive care unit

HR-QoL:

Health-related quality of life

NM:

Neisseria meningitidis

PRISM:

Pediatric Risk of Mortality Score

VAS:

Vasopressor score

DIC:

Disseminated Intravascular Coagulation score

References

  1. Hazelzet, J. A. (2005). Diagnosing meningococcemia as a cause of sepsis. Pediatric Critical Care Medicine, 6, S50–S54.

    Article  PubMed  Google Scholar 

  2. Judge, D., Nadel, S., Vergnaud, S., & Garralda, M. E. (2002). Psychiatric adjustment following meningococcal disease treated on a PICU. Intensive Care Medicine, 28, 648–650.

    Article  PubMed  Google Scholar 

  3. Shears, D., Nadel, S., Gledhill, J., & Garralda, M. E. (2005). Short-term psychiatric adjustment of children and their parents following meningococcal disease. Pediatric Critical Care Medicine, 6, 39–43.

    Article  PubMed  Google Scholar 

  4. Fellick, J. M., Sills, J. A., Marzouk, O., Hart, C. A., Cooke, R. W., & Thomson, A. P. (2001). Neurodevelopmental outcome in meningococcal disease: A case–control study. Archives of Disease in Childhood, 85, 6–11.

    Article  PubMed  CAS  Google Scholar 

  5. van Schie, R. M., Knoester, H., Bos, A. P. & Grootenhuis, M. A., (2005). Quality of life in adolescents after surviving meningococcal septis shock in childhood. In 16th ESPNIC Medical and Nursing Annual Congress.

  6. Raat, H., Mohangoo, A. D., & Grootenhuis, M. A. (2006). Pediatric health-related quality of life questionnaires in clinical trials. Current Opinion in Allergy and Clinical Immunology, 6, 180–185.

    Article  PubMed  Google Scholar 

  7. Clarke, S. A., & Eiser, C. (2004). The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health and Quality of Life Outcomes, 2, 66.

    Article  PubMed  Google Scholar 

  8. World Health Organization. (1948). Constitution of the World Health Organization. WHO Basic Documents. Geneva: World Health Organization.

  9. Abraham, E., Matthay, M. A., Dinarello, C. A., Vincent, J. L., Cohen, J., Opal, S. M., Glauser, M., Parsons, P., Fisher, C. J., Jr., & Repine, J. E. (2000). Consensus conference definitions for sepsis, septic shock, acute lung injury, and acute respiratory distress syndrome: Time for a reevaluation. Critical Care Medicine, 28, 232–235.

    Article  PubMed  CAS  Google Scholar 

  10. de Groof, F., Joosten, K. F., Janssen, J. A., de Kleijn, E. D., Hazelzet, J. A., Hop, W. C., Uitterlinden, P., van Doorn, J., & Hokken-Koelega, A. C. (2002). Acute stress response in children with meningococcal sepsis: Important differences in the growth hormone/insulin-like growth factor I axis between nonsurvivors and survivors. Journal of Clinical Endocrinology and Metabolism, 87, 3118–3124.

    Article  PubMed  Google Scholar 

  11. de Kleijn, E. D., de Groot, R., Hack, C. E., Mulder, P. G., Engl, W., Moritz, B., Joosten, K. F., & Hazelzet, J. A. (2003). Activation of protein C following infusion of protein C concentrate in children with severe meningococcal sepsis and purpura fulminans: A randomized, double-blinded, placebo-controlled, dose-finding study. Critical Care Medicine, 31, 1839–1847.

    Article  PubMed  Google Scholar 

  12. Van der Kaay, D. C., De Kleijn, E. D., De Rijke, Y. B., Hop, W. C., De Groot, R., & Hazelzet, J. A. (2002). Procalcitonin as a prognostic marker in meningococcal disease. Intensive Care Medicine, 28, 1606–1612.

    Article  PubMed  Google Scholar 

  13. den Brinker, M., Joosten, K. F., Liem, O., de Jong, F. H., Hop, W. C., Hazelzet, J. A., van Dijk, M., & Hokken-Koelega, A. C. (2005). Adrenal insufficiency in meningococcal sepsis: Bioavailable cortisol levels and impact of interleukin-6 levels and intubation with etomidate on adrenal function and mortality. Journal of Clinical Endocrinology and Metabolism, 90, 5110–5117.

    Article  CAS  Google Scholar 

  14. Vermont, C. L., den Brinker, M., Kakeci, N., de Kleijn, E. D., de Rijke, Y. B., Joosten, K. F., de Groot, R., & Hazelzet, J. A. (2005). Serum lipids and disease severity in children with severe meningococcal sepsis. Critical Care Medicine, 33, 1610–1615.

    Article  PubMed  CAS  Google Scholar 

  15. Derkx, B., Wittes, J., & McCloskey, R. (1999). Randomized, placebo-controlled trial of HA-1A, a human monoclonal antibody to endotoxin, in children with meningococcal septic shock. European Pediatric Meningococcal Septic Shock Trial Study Group. Clinical Infectious Diseases, 28, 770–777.

    PubMed  CAS  Google Scholar 

  16. Wernovsky, G., Wypij, D., Jonas, R. A., Mayer, J. E., Jr., Hanley, F. L., Hickey, P. R., Walsh, A. Z., Chang, A. C., Castaneda, A. R., Newburger, J. W., et al. (1995). Postoperative course and hemodynamic profile after the arterial switch operation in neonates and infants. A comparison of low-flow cardiopulmonary bypass and circulatory arrest. Circulation, 92, 2226–2235.

    Google Scholar 

  17. Taylor, F. B., Jr., Toh, C. H., Hoots, W. K., Wada, H., & Levi, M. (2001). Towards definition, clinical and laboratory criteria, and a scoring system for disseminated intravascular coagulation. Thrombosis and Haemostasis, 86, 1327–1330.

    PubMed  CAS  Google Scholar 

  18. Pollack, M. M., Ruttimann, U. E., & Getson, P. R. (1988). Pediatric risk of mortality (PRISM) score. Critical Care Medicine, 16, 1110–1116.

    Article  PubMed  CAS  Google Scholar 

  19. Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473–483.

    Article  PubMed  Google Scholar 

  20. Raat, H., Bonsel, G. J., Essink-Bot, M. L., Landgraf, J. M., & Gemke, R. J. (2002). Reliability and validity of comprehensive health status measures in children: The Child Health Questionnaire in relation to the Health Utilities Index. Journal of Clinical Epidemiology, 55, 67–76.

    Article  PubMed  Google Scholar 

  21. Raat, H., Landgraf, J. M., Oostenbrink, R., Moll, H. A., & Essink-Bot, M. (2007). Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample. Quality of Life Research, 16, 445–460.

    Article  PubMed  Google Scholar 

  22. Raat, H., Landgraf, J. M., Bonsel, G. J., Gemke, R. J., & Essink-Bot, M. L. (2002). Reliability and validity of the child health questionnaire-child form (CHQ-CF87) in a Dutch adolescent population. Quality of Life Research, 11, 575–581.

    Article  PubMed  CAS  Google Scholar 

  23. Raat, H., Mangunkusumo, R. T., Landgraf, J. M., Kloek, G., & Brug, J. (2007). Feasibility, reliability and validity of adolescent health status measurement by the Child Health Questionnaire Child Form (CHQ-CF): Internet administration compared with the standard paper version. Quality of Life Research, 16, 675–685.

    Article  PubMed  Google Scholar 

  24. Aaronson, N. K., Muller, M., Cohen, P. D., Essink-Bot, M. L., Fekkes, M., Sanderman, R., Sprangers, M. A., te Velde, A., & Verrips, E. (1998). Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. Journal of Clinical Epidemiology, 51, 1055–1068.

    Article  PubMed  CAS  Google Scholar 

  25. Koomen, I., Raat, H., Jennekens-Schinkel, A., Grobbee, D. E., Roord, J. J., & van Furth, M. (2005). Academic and behavioral limitations and health-related quality of life in school-age survivors of bacterial meningitis. Quality of Life Research, 14, 1563–1572.

    Article  PubMed  Google Scholar 

  26. Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10, 347–357.

    Article  PubMed  CAS  Google Scholar 

  27. Stancin, T., Drotar, D., Taylor, H. G., Yeates, K. O., Wade, S. L., & Minich, N. M. (2002). Health-related quality of life of children and adolescents after traumatic brain injury. Pediatrics, 109, E34.

    Article  PubMed  Google Scholar 

  28. Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). The CHQ user’s manual. The Health Institute, New England Medical Center, Boston.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Paediatrics, Division of Paediatric Intensive Care, Erasmus MC-Sophia Children’s Hospital, Dr. Molewaterplein 60, 3015, GJ, Rotterdam, The Netherlands

    Corinne M. P. Buysse, Jan A. Hazelzet & Koen F. M. Joosten

  2. Department of Public Health, Erasmus MC, Rotterdam, The Netherlands

    Hein Raat

  3. Department of Child and Adolescent Psychiatry, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands

    Lindy C. A. C. Vermunt & Elisabeth M. W. J. Utens

  4. Department of Epidemiology and Biostatistics, Erasmus MC, Rotterdam, The Netherlands

    Wim C. J. Hop

Authors
  1. Corinne M. P. Buysse
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Hein Raat
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jan A. Hazelzet
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Lindy C. A. C. Vermunt
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Elisabeth M. W. J. Utens
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Wim C. J. Hop
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Koen F. M. Joosten
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Corinne M. P. Buysse.

Appendices

Appendices

Appendix 1 CHQ-PF50 scales, items per scale and score interpretationa
Full size table
Appendix 2 CHQ-CF87 scales, items per scale and score interpretationa
Full size table
Appendix 3 SF-36: scales, items per scale and score interpretation
Full size table

Rights and permissions

Reprints and permissions

About this article

Cite this article

Buysse, C.M.P., Raat, H., Hazelzet, J.A. et al. Long-term health-related quality of life in survivors of meningococcal septic shock in childhood and their parents. Qual Life Res 16, 1567–1576 (2007). https://doi.org/10.1007/s11136-007-9271-8

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-007-9271-8

Keywords

Search

Navigation