Maayke Hunfeld

243 General discussion parents’/caregivers’ tremendous anxiety and stress. Nevertheless, it also comforts the chain of caregivers: fromfiremen who were at the scene, to nurses and doctors. It makes them feel good and motivates them to keep doing their sometimes-challenging jobs. However, when the prognosis is futile or uncertain, it becomes more difficult. The questions that arise in the medical team are: to what extent do we need to treat the child? Is an expensive intensive care treatment with possible suffering always justified? For the parents this is an even more very strained and demanding period. They live with fear, not knowing where the intense and painful treatment will lead. Will their child survive? And if he or she survives, what will the future be like: with or without neurological sequelae, both at the short and long term? Will their child be able to enjoy life, communicate, live independently, participate in society? The definition of a good outcome after OHCA will vary across families, but also between individual caregivers, and even within a medical team. Different components are at play here, such as gender, cultural and religious beliefs, ethnicity, and personal experiences. For some families, a child’s physical presence is worthwhile, even if the child is vegetative, or wheelchair-bound and not able to communicate, whereas others feel that any degree of neurological deficit is unacceptable and therefore want to discontinue life-sustaining therapies. Parents and clinicians often differ in the assessment of what is in a child’s best interest (68). This often leads to discussion within the medical team, but also in the conversations of professionals with parents. We should not forget that older children themselves also might have an opinion about their outcome and their QoL, which might differ from their parent’s view. Van Zellem et al. investigated self-reported QoL of pediatric IHCA and OHCA survivors. Health-related QoL was significantly worse than that of the norm population on various domains (69). In contrast, previous research showed that self-reported QoL of neurologically impaired children and adolescents with brain or neuromuscular disorders such as epilepsy, cerebral palsy, brain tumors and Duchenne muscular dystrophy was equal or even better than that of the general population. In these often neurologically very limiting conditions, parents tend to rate their child’s QoL lower than the child itself does (70-73). From a societal perspective, children with severe neurological deficits are a financial burden on our society. They need extensive and expensive medical and supportive care for a prolonged period, or even their entire life span. They will not be able to participate in society in adulthood, not be able to participate in payed labor, not be able to pay taxes, etc. Up to now, this issue is underexposed, and is not well taken into account in clinical situations. Nevertheless, health economists have tools available to calculate both direct and indirect costs. In the future thinking about value based care, also Patient Recorded Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) could be used within this context. 8