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.