129 Determinants for side effects 4 Dexamethasone-induced sleep problems The following determinants had a p-value <0.20 in univariable regression analyses for sleep problems: SDSC T1 score, maternal nationality, NOSI-K delta score and DT-P thermometer T2 score (reflecting parenting stress during dexamethasone treatment of the child), DT-P total score (reflecting parental stress before the start of a dexamethasone course), and psychological support of the child (Supplemental Table 3). No significant association was found between other demographics, disease or treatment characteristics, parental support, dexamethasone pharmacokinetics, nor carrier status of rs4918, and dexamethasone-induced sleep problems in our cohort (Supplemental Table 3). The multivariable logistic regression model included age and sex of the child, maintenance week, SDSC T1 score, maternal nationality, parenting stress (delta NOSI-K) and parental stress (DT-P total score) (Table 2). Parenting stress during dexamethasone (delta NOSI-K) remained statistically significantly associated with parent-reported sleep problems of the children (OR 1.06, 95%-CI 1.02-1.10). A one-point rise on the NOSI-K delta score gave 6% higher odds of parent-reported dexamethasone-induced sleep problems, corrected for the other included variables. Furthermore, both SDSC T1 score (OR 0.93, 95%-CI 0.87-1.00) and parental stress at T1 (DT-P total score, OR 1.16, 95%-CI 1.02-1.32) were significantly associated with sleep problems, indicating that parents of children who had a higher SDSC score at T1, reported less dexamethasone-induced sleep problems, whereas parents who experienced more stress before the start of a dexamethasone course reported more sleep problems in their child. Parental experiences and coping Ninety-eight parents (93%, 79 mothers and 19 fathers) completed two questions concerning their experiences with dexamethasone and parental coping; multiple responses were possible. Parents’ ways of managing during the dexamethasone courses differed from doing nothing extra or acting normal to merely surviving. Phrases like ‘it is doom and gloom’ and ´these five days are exhausting’ were mentioned by parents. Interestingly, twenty-six parents spontaneously indicated that they wield lax(er) parenting strategies during dexamethasone treatment.
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