Background:
Corticosteroid (“steroid”) treatment is an essential element of treatment protocols for Multiple Myeloma (MM). Clinically, it has been long established that the use of these steroids can have an impact on the psychological as well as physical functioning of patients, with some exhibiting distressing and serious consequences of use.
Aim: To examine the experience of the taking steroids for patients with MM and their carers, including both positive and negative psychological effects and the impact on QOL.
Method: A two-phase study using both Qualitative and Quantitative approaches was utilised. The initial phase examined the experience of steroids for patients and carers through focus groups and individual interviews. The second phase used a tailored patient diary to record an assessment of steroid effects including type, frequency, severity and impact. This phase also included in-depth interviews and questions from specific scales including the Symptom Assessment Scale.
Results: The initial phase study included 47 participants, with 22 participants completing the in-depth interviews and diary monitoring. The most common reported effects of steroids included mood changes, insomnia, cognitive changes, daily functionality and energy levels. The further psychological impacts of the use of steroids was also demonstrated in the examination of the ways in which patients developed coping and adaptive strategies to manage the effects of the steroid itself such as withdrawal, isolation, compensation behaviours. Patients also identified that experience with steroids allowed them to be better able to make decisions and manage based on their prior side effects, whilst for newer patients these were much harder to control.
Conclusion: The study has identified the significant burden of symptoms and effects of the use of steroid therapy in this population. The psychological impact on the patients and their carers suggests that further clinical strategies need to be employed to manage the often severe side effects and develop tools to identify those most at risk of developing negative effects.