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

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