Patient and caregiver understanding of multiple myeloma: A scoping review

Multiple myeloma (MM) is a complex haematology malignancy. The terminology required when explaining the disease and treatment options is challenging. Shared informed decision-making demands sufficient knowledge but there is a lack of literature examining the understanding that MM patients and informal caregivers possess. This review synthesises existing literature on patient and caregiver understanding of MM diagnosis, prognosis, and treatment, plus identification of any moderating factors.

This review followed the Joanna Briggs Institute method for Scoping Reviews. Searches were conducted in MEDLINE, CINAHL, PsycINFO, and grey literature sources. Publications in English, reporting primary data from caregivers or patients with MM with outcomes relating to knowledge and understanding of diagnosis, prognosis or treatment were included. Results from quantitative studies were summarised with descriptive narrative; qualitative studies were analysed thematically.

16 papers, 7 quantitative, 9 qualitative, published between 2015 and 2024 were included. None reported objective assessment of understanding. MM patients reported moderate comprehension generally, though disease related knowledge, particularly diagnostic testing, was poor. Discordant perceptions of MM curability were reported; some retaining belief of cure despite acknowledging clinical advice that this was unachievable. Patients and caregivers believed that prognostic knowledge was important and helpful, yet many received insufficient information.

Sparse research had a primary aim of investigating understanding of MM. Findings indicated a need for further research, particularly around understanding of prognosis, and how this relates to decision making. Investigation is also needed regarding educational interventions early in the pathway, with their impact on treatment decisions and quality of life.