'Enough is enough': qualitative findings on the impact of dexamethasone during reinduction/consolidation for paediatric acute lymphoblastic leukaemia

Abstract

The results of a longitudinal study conducted with children undergoing treatment for acute lymphoblastic leukaemia (ALL) and their families in Brisbane, Australia, indicate that the emotional impact of one of the protocol drugs, dexamethasone, is acutely distressing. The findings presented cover the second interviews with the parents and children of the first 11 ALL families to have completed the re-consolidation stage of treatment. The results indicate that the negative impact of this drug is particularly severe during the reconsolidation stage, when families are exhausted with coping with the intensity of treatment. Thus, the administration of dexamethasone is a critical point in the pathway of care for children with ALL. The emotional consequences of the drug are profoundly disturbing, not only for the child, but for the whole family. The findings indicate that the period when dexamethasone is being administered is an important time for providing families with emotional support and information about likely sequelae of treatment. Because of guilt and self-doubt parents will not necessarily seek help, even if it is greatly needed. Recommendations are provided as to possible ways of reducing the distressing impact of the administration of this pharmaceutical intervention.

“I was never like that”: Australian findings on the psychological and psychiatric sequelae of corticosteroids in haematology treatments

“…Some corticosteroids, such as dexamethasone, were noted to be particularly severe in terms of their side effects. Such findings echo similar insights provided on dexamethosone use in paediatrics [21].…”

“…The research that does exist is comprised of three case studies [5,26,37] and one exploratory empirical study of paediatric leukaemia patients [21]. There is a strong need for empirical data in relation to adults under treatment for haematological malignancies.…”

The Emotional Consequences of Corticosteroid Use in Hematology: Preliminary Findings

“…Overtiredness has serious impacts on normal life ranging along the continuum from ennui and exhaustion to the more extreme psychiatric condition of paranoia. The findings from the adult data resonate with previous insights from paediatric hematology research on the steroid dexamethasone, where it was found that children were awake all night eating excessively (McGrath & Pitcher, 2002). There is also evidence of sleeplessness being a problem associated with steroid use in an adult case study of a patient undergoing an allogeneic bone marrow transplant (Nakamae et al, 2002).…”

“…However, there is a dearth of literature documenting the emotional and psychiatric side effects of steroid use for hematology patients (McGrath, Pun, James, & Holewa, 2007) and a related lack of comprehensive recommendations for the management, education, and support of patients undergoing steroid treatment and their families. The psychosocial research conducted to date is limited to three case studies (Ducore, Waller, Emslie, & Bertolone, 1983;Nakame, Yamane, & Aoyama, 2002;Sutor, Wells, & Rummans, 1996) and one exploratory empirical study of paediatric leukaemia patients (McGrath & Pitcher, 2002).…”

Steroid-induced alterations of mood and behavior in children during treatment for acute lymphoblastic leukemia

“…Prevalence While children treated with GCs may experience a host of side effects, families often find the emotional and behavioral aberrations caused by steroids to be the most deleterious to quality of life [62]. Several studies have examined the nature and prevalence of the latter phenomenon in children.…”