Understanding multiple myeloma: insights into patients’ experiences and preferences for communication, information and support

To explore the unmet communication, information, and support needs of people living with multiple myeloma (MM) and identify helpful and unhelpful phrases or behaviors used by family and friends (F&F) and healthcare professionals (HCPs) in the Patient Understanding of Multiple Myeloma and Communication Experiences (PUMMaCE) study. An online survey was co-developed with HCPs and people living with MM, as part of the study. The survey consisted of closed- and open-ended questions. A framework analysis was conducted on the qualitative free-text responses to identify key themes related to patients’ communication experiences and preferences. In total, 138 people living with MM completed the survey. The free-text comments were organized into six overarching themes. Making sense of MM, gaps in understanding MM, communicating MM to F&F, F&F behaviors, HCP interactions, and healthcare systems and pathways. Many felt confused by the complex terminology and had unanswered questions about their disease, treatment, and prognosis. Limited understanding often led to F&F exhibiting unhelpful behaviors. Yet, there were also examples of positive communication and behaviors that supported respondents in managing their day-to-day life. Significant gaps in communication, information, and support exist in MM care. The findings of this survey illustrate the challenges posed by the complexity of the language used routinely by HCPs, which can lead to distress and misunderstandings. These data will be used to inform the production of educational materials to improve communication among patients, their families, and HCPs.