263 General discussion 8 Taking all advice into account, we decided to propose the innovative strategy to offer parents the choice between open-label placebo or hydrocortisone in a shared decision making setting whenever children (or parents) report clinically relevant dexamethasoneinduced neurobehavioral problems. Both expectancies and believes of parents/patients and healthcare providers will play a role in the choice between hydrocortisone or placebo. The pros and cons of both interventions are depicted in Table 2. Table 2. Pros and cons of hydrocortisone and open-label placebo use Hydrocortisone Open-label placebo Pros Cons Pros Cons Expectations of parents and patients Side effects? No side effects Hard(er) to explain Believes of parents and patients Still a medicine No extra active medication Open-label placebo ≠ study placebo Expectations of the healthcare provider Increased feeling of hunger Believes of parents and patients Skepticism of healthcare providers Easy to explain This novel intervention started in May 2023 in the Princess Maxima Center, and standard of care evaluation will show whether the effect of the choice of hydrocortisone or open-label placebo is comparable to the effect described in this thesis. Besides the implementation of offering a choice between the interventions as standard of care, we attempt to downscale the nocebo effect of dexamethasone, by creating awareness, adjusting dexamethasone information, and training healthcare providers to discuss dexamethasone-induced side effects in a uniformly prepared, concise, less repeated and more neutral way. In conclusion The research and implications for clinical care described in this thesis are an essential step towards beating dexamethasone-induced side effects. We do not expect all the side effects of dexamethasone to suddenly disappear, but if the edges are taken off, a step towards enhanced quality of life for both patients and their families is achieved during the 2 years of ALL treatment. In addition to the implementation steps which we already undertook, we identified several gaps of knowledge that may be addressed either in future research and/or in clinical practice (summarized in Table 3). These include directions for measurement of dexamethasone-induced side effects, identification of patients at risk and treatment and evaluation options. The ultimate goal is to improve quality of life for children with ALL during dexamethasone treatment and thereafter.
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