And Tell Yourself, "This is not Me, it's the Drug": Coping with the Psychological Impact of Corticosteroid Treatments in Hematology - Further Results from a Pilot Study.

BACKGROUND: Corticosteroids are documented as associated with psychological adverse effects, including insomnia, irritability, aggression, neuropsychological deficits, mood disorders (including severe depression), delirium, and psychosis. Given the severity of these potential adverse effects and that corticosteroid use is central to the treatment of most hematological malignancies, it would be expected that a thorough research literature would exist on the effects of corticosteroid use in hematology. However, scant research is available. This leaves many questions unanswered and a vacuum for clinical practice. Thus, there is a strong need for empirical data, not only on the psychological adverse effects experienced by patients, but also on the coping strategies patients use to manage them.
OBJECTIVE: To present findings on the coping strategies used by ten hematology patients in Australia undergoing treatment involving corticosteroids as a first step in understanding the emotional and psychological effects experienced by this group of patients.
METHODS: The pilot study was conducted from January 2007 until March 2008.The study participants were ten hematology outpatients (eight with multiple myeloma, two with acute immune thrombocytopenia purpura) from two major Australian public hospitals (Princess Alexandra Hospital, Brisbane, Queensland, and Fremantle Hospital, Fremantle, Western Australia) who were taking dexamethasone and/or prednisolone and referred to the study by their treating hematologists on the basis that they were experiencing difficulties with their corticosteroid therapy.Data were collected through an iterative, phenomenological, qualitative research methodology using open-ended interviews. Interview transcriptions were entered into the QSR NUD*IST (Non-numeric, Unstructured Data * Index and Searching Technology) computer program and analyzed thematically.
RESULTS: Coping strategies found to be helpful by patients included believing that corticosteroids are necessary for disease control, knowing that the negative emotional states being experienced are due to the corticosteroids, stoicism and self-reliance based on a cognitive-rational approach, keeping busy, remaining fit and active, and, for some, using antidepressants to help with mood swings. For sleep disturbances, patients found it helpful to try to accept the sleeplessness, engage in distraction, and have light sleeps. Support from family and friends who understand the range of corticosteroid adverse effects, including patients' need to withdraw during treatment, was seen as important. Counseling was not considered helpful. Tapering corticosteroid doses and cessation of corticosteroids were also discussed as aids to coping.
CONCLUSION: These findings provide a start to understanding how individuals cope with corticosteroid therapy for hematological conditions. There is a need for further extensive research in this area.