Characterizing the Patient Journey in Multiple Myeloma: A Patient Perspective (Preprint)

BACKGROUND Current published information on the patient perspective and treatment of multiple myeloma (MM) is limited, making it difficult to gain insights into patient needs regarding the condition. OBJECTIVE In this review, a combined research methods approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients’ perspectives on the impact of MM and its treatment. METHODS Targeted searches of PubMed and PsycINFO were conducted and, in parallel, patient-reported information (PRI) derived from social media posts from 6 patient advocacy websites and YouTube was searched. RESULTS A total of 27 articles and 138 posts were included (PRI included information from 76 individuals), and results from both sources found that patients experience a variety of symptoms and treatment side effects that affect areas of health-related quality of life (HRQoL), including physical functioning; emotional, psychological, and social well-being; the ability to work; and relationships. Patients valued involvement in treatment decision-making and preference for treatments was strongest when associated with increased survival. Caregiver HRQoL is affected in several areas, including emotional-, role-, social-, and work-related aspects of life. CONCLUSIONS The combination of published literature and PRI provides valuable and rich detail on the patient experience and perceptions of MM and its treatment. The data highlighted that patients’ HRQoL is impeded not only by the disease, but also by the treatment-related side effects; there is a range of unmet needs and areas for further research to improve the understanding of the journey for patients with MM.