264 Chapter 8 Table 3. Gaps of knowledge and future directives Domain Directions for future research and clinical practice Neurobehavioral problems Outcome measurement - Measure neurobehavioral problems systematically in children receiving dexamethasone, include the first administration phase - Use specific PROMIS items when available - Use self-report questionnaires when possible - Include screening for depressive symptoms in older children Identification of patients at risk - Genetic susceptibility: identification of genetic variants - Polygenic risk score development - Include parental coping and family and medical history - Use the PAT to screen for psychosocial risk before the start of dexamethasone - Development of a prediction model to identify patients at risk Interventions - Implementation of hydrocortisone and open-label placebo for those children who suffer most - Evaluation of this implementation: both the process and effect of (offering) the intervention - Targeting of parenting stress to possibly reduce child (dexamethasone related) problems Sleep problems Outcome measurement - Subjective sleep measurement: development of PROMIS item - Objectively measure sleep problems with actigraphy, preferably on multiple time points during dexamethasone treatment - Combine subjective and objective sleep measurement - Measurement of sleep with polysomnography during glucocorticoid treatment Identification of patients at risk - Combining measurements of child sleep, parental sleep and child and environmental factors - Development of a risk prediction model Intervention - Targeting of parenting and parental stress to possibly improve child sleep
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