Surviving meningococcal septic shock: health consequences and quality of life in children and their parents up to 2 years after pediatric intensive care unit discharge.

OBJECTIVE: To assess health consequences and health-related quality of life (HR-QoL) in children with meningococcal septic shock up to 2 yrs after discharge from the pediatric intensive care unit and to assess their parents. To determine major predictors of that outcome. PATIENTS AND METHODS: A prospective cohort study. Follow-up of all consecutive children with septic shock and purpura requiring intensive care treatment between 2001 and 2005, and their parents. HR-QoL was assessed with the Child Health Questionnaire (children) and Medical Outcomes Study 36-item Short-Form Health Survey (parents). RESULTS: Of 53 eligible families, 47 participated (28 boys/19 girls; median age at the time of pediatric intensive care unit admission, 3.7 yrs; median Pediatric Risk of Mortality score, 21). A total of 26 children (55%) had scars as a result of skin necrosis; two (4%) had amputation of a digit or digits. In 21 children (45%), chronic complaints were reported. Children with and without chronic complaints did not differ significantly with regard to severity of illness and age at the time of pediatric intensive care unit admission. Significantly lower scores were found on HR-QoL scales concerning mainly physical functioning and health perception in comparison with normative data. There was a significant negative association between severity of illness and the HR-QoL scale concerning physical functioning. Children with chronic complaints had significantly lower scores on the HR-QoL scale concerning pain. Eight of 47 mothers (17%) at the time of the study had anxiety or depression requiring professional help. Mothers with and without these problems differed significantly with regard to age of their child at the time of pediatric intensive care unit admission. Parents showed significantly higher scores on HR-QoL scales concerning physical functioning and bodily pain in comparison with normative data. There was a significantly negative association between the presence of emotional problems and HR-QoL scores in mothers. CONCLUSIONS: Up to 2 yrs after discharge from the pediatric intensive care unit, there is still a considerable effect on health and HR-QoL in children, especially on the physical scales. Severity of illness and chronic complaints negatively affected HR-QoL scales in children. Quite a few mothers suffered from emotional problems.