Discussion
PROM, toxicity, SSNS, chronic illness, pain, ill
INS, DISEASE, CHRONIC ILLNESS, SECONDARY, REMISSION
The results of this study show that at first onset of SSNS, HRQoL and EBD are already affected in children of different ages (2–16 years) compared to a reference group of the Dutch general population. However, not all age groups were equally affected. The effect was more profound in older children (≥ 8 years) than in younger children, with children aged 5–7 years scoring even better on social functioning.Total HRQOL, physical and emotional functioning were significantly affected in children aged 8–17 years. Physical functioning can be impacted by limitations in daily activities, while mood disturbances – whether caused by steroids – can affect emotional functioning. More specifically, on the individual items, children with SNSS indicated that they experienced more pain, lower energy levels, and trouble sleeping (physical functioning), and feeling angry and worrying (emotional functioning) than their peers. Older children may be more aware of their condition than younger children, who scored comparable to their peers. Social functioning was not affected in any age group. Children 5–7 years scored even better on social functioning than reference and reported having fewer problems with getting along with peers or making friends. This could be explained by the fact that they may fare well by the attention received from family, friends, and schoolmates. Although children in our study have only been ill for four weeks, this is in line with previous studies, in which social functioning was also unaffected in children with a chronic illness [This is the first study in children with first onset SSNS and in whom disease is in remission. Our findings are in line with those of Selewski et al. who reported that HRQoL – measured by PedsQL – in American children aged 8–17 years old with incident INS (i.e. first onset within 14 days of therapy) was worse than peers on physical, social, and total functioning [Previous studies have found an association between the use and cumulative dose of steroids and HRQoL [At four weeks after onset, children are at their peak of steroid side-effects. While toxicity still continues after four weeks, study subjects were switched to alternate day prednisolone (60 mg/mAs Selewski et al. [This study was limited by small sample sizes per age group, which is secondary to the low incidence of SSNS. Due to a lack of power, differences that may be clinically relevant could have been missed. Therefore, we calculated effect sizes (Cohen’s On the other hand, this study is strengthened by the fact that this is the first study in children with first onset SSNS, adding new insights into the well-being of these children. The study consisted of a homogeneous population that spanned a wide age range (2–16 years), now including children in which SSNS is more incident. Furthermore, a high response rate was achieved (86%), which can be owed to the prospective study design, use of an online PROM portal, and a dedicated study team. Finally, recent Dutch reference data for both validated PedsQL and SDQ were available.