Marten J. Poley - Erasmus Universiteit Rotterdam

150Summaryexpense of poor HRQoL in adulthood. Even though there is considerable sufferingin terms of both morbidity and mortality in the youngest group, the vast majorityof the patients ultimately enjoy healthy lives.We then examine the cost-effectiveness of neonatal extracorporeal membraneoxygenation (ECMO), an intervention the cost-effectiveness of which probably hasbeen questioned more than that of any other intervention in neonatal surgery(Chapter 5). A nation-wide population of 244 consecutive ECMO-treated newbornsborn between 1991 and 2001 with a diagnosis of CDH or meconium aspirationsyndrome (MAS) is compared to a historical control group of patients with CDH orMAS who would have been eligible for ECMO, were it available at the time. Meandirect medical costs for treatment including ECMO amount to € 38,553 perpatient, those for a patient with CDH (€ 50,792) being considerably higher thanthat for a patient with MAS (€ 29,472). Costs of treatment of patients in thecontrol group are comparatively low with an average of € 17,300. For CDHpatients, the survival rate is 0.04 without ECMO and 0.52 with ECMO. For MASpatients, survival without ECMO is 0.50, as compared to 0.94 in the ECMO era.Costs per additional survivor are € 78,455, or € 3,153 per life-year gained, in thepatients with CDH. For the patients with MAS, costs per additional survivor arecalculated at € 17,287, or € 697 per life-year gained. These findings indicate thatECMO improves survival in selected severely ill newborns suffering from CDH orMAS, and that it does so at reasonable cost.Chapter 6 goes on to consider the position of the parents of children who asnewborns underwent treatment for ARM or CDH. It is investigated what it takes tocare for these children (aged 1–11 years) and whether caregiving has an effecton the parents' HRQoL, encompassing physical, mental, and social domains.Approximately one third of the parents indicates that their child demands aboveaveragecare. They mention activities such as giving enemas and changingdiapers (ARM patients), or giving extra attention and administering medication(CDH patients). Relatively small shares of the parents have to forgo paid work orunpaid activities. Using the EQ-5D, the parents' HRQoL is found to be relativelylow compared with population statistics, especially in the parents of children withARM and in mothers. Interestingly, on average the parents consider that theirHRQoL would not be substantially better when someone else would take overtheir caregiving activities.Chapter 7 returns to the issue of the relevance of cost-effectiveness analyses inneonatal surgery, already touched upon in Chapter 1. It is argued that pediatricsurgeons are in a position to ethically accept rationing policies. Moreover,examining the state of the art in this area, it is found that the number ofpublished cost-effectiveness studies in the field of neonatal surgery is still small.A literature review over the period 1999 through 2005 identifies no more than 11relevant studies. Then, we generate insights into how cost-effectiveness interactswith other relevant determinants of how much priority should be given to