Overcoming the Odds: Long-term psychosocial outcomes in survivors of meningococcal septic shock in childhood, and in their parents

Septic shock, caused by Neisseria meningitidis with petechiae and/or purpura, also called Meningococcal Septic Shock (MSS), is the most serious form of meningococcal infection in early childhood. MSS is a life-threatening illness in mostly previously healthy children, with an unexpected and sudden onset, requiring immediate admission to a Paediatric Intensive Care Unit (PICU). A previously healthy child may die within 24 hours. In literature both medical and psychological problems were reported shortly after the illness, but little is known about the long-term outcomes. Therefore the study described in this thesis was started to investigate the long-term psychosocial outcomes. Various indicators of psychosocial functioning of children, adolescents and young adults who survived MSS, and their parents, were measured. This follow-up was performed from 2005 till 2006 among 136 consecutive surviving patients, who were admitted to the PICU of ErasmusMC-Sophia Children’s Hospital between 1988 and 2001, at least four years ago (4-16 years). Overall, for MSS children, adolescents and young adults, favourable long-term outcomes on cognitive functioning, behavioural and emotional problems, including post-traumatic stress problems, and self-esteem were found. Unfavourable psychosocial outcomes were found on several neuropsychological domains and on self-esteem. Male gender was a risk factor for psychosocial functioning. Severity of illness and age at time of illness were not related to psychosocial functioning. Overall, MSS adolescents were more at risk for psychosocial problems than MSS children. MSS parents showed favourable, even better than ‘normal’ outcomes as to mental health. Nevertheless a minority of parents still experienced disease-related psychosocial limitations. Based on results of this study and of previous short-term studies it can be concluded that a short-term screening, with a special focus on behavioural and emotional problems in children and on PTSD symptoms in parents, is to be recommended for clinical practice