BACKGROUND: The patient experience of multiple myeloma (MM) is multifaceted and varies substantially between individuals. Current published information on the patient perspective and treatment of MM is limited, making it difficult to gain insights into patient needs regarding the condition.
OBJECTIVE: In this review, a combined research method approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients' perspectives on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact of MM on caregivers of patients with MM.
METHODS: Targeted searches of PubMed and PsycINFO were conducted from November 16, 2010, to November 16, 2020; in parallel, patient-reported information derived from social media posts from 6 patient advocacy websites and YouTube were searched. The review of patient advocacy websites and YouTube targeted patient-reported information from patients with a self-reported diagnosis of MM who discussed their experience of MM and its treatments.
RESULTS: A total of 27 articles and 138 posts were included (patient-reported information included data from 76 individuals), and results from both sources showed that patients experienced a variety of symptoms and treatment side effects, including neuropathy, fatigue, nausea, and back pain. These can 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 both the patient-reported information and the literature indicated that efficacy and tolerability strongly influence treatment decision-making. For patients, caregivers, and physicians, the preference for treatments was strongest when associated with increased survival. Caregivers can struggle to balance care responsibilities and jobs, and their HRQOL is affected in several areas, including emotional-, role-, social-, and work-related aspects of life. The COVID-19 pandemic has challenged patients' ability to manage MM because of limited hospital access and restrictions that negatively affected their lives, psychological well-being, and HRQOL. Unmet patient needs identified in the literature and patient-reported information were for more productive appointments with health care professionals, better-tolerated therapies, and more support for themselves and their caregivers.
CONCLUSIONS: The combination of published literature and patient-reported information provides valuable and rich details on patient experiences and perceptions of MM and its treatment. The data highlighted that patients' HRQOL is impeded not only by the disease but also by treatment-related side effects. Patients in the literature and patient-reported information showed a strong preference for treatments that prolong life, and patients appeared to value participation in treatment decisions. However, there remain unmet needs and areas for further research, including treatment, caregiver burden, and how to conduct appointments with health care professionals. This may help improve the understanding of the journey of patients with MM.
PLAIN LANGUAGE SUMMARY: Multiple Myeloma (MM) is the second most common cancer that affects blood cells. In this study, researchers wanted to know patients' views on the effects of MM and the treatments they received. Researchers also looked at the impact of the COVID-19 pandemic on patients' treatment and the impact of MM on caregivers. To this end, the researchers reviewed information from 27 published studies and 138 social media posts by 76 patients with MM. Patients commonly reported nerve pain, tiredness, feeling sick, and back pain caused by MM and the treatments they received. The effects of MM and treatments affected patients' physical function; emotional, psychological, and social well-being; ability to work; and relationships. The researchers found that patients wanted to be involved in decisions related to their treatment. The effectiveness against MM and known negative effects strongly influenced the choice of treatments for patients. Increased survival was the strongest factor in the choice of treatment for patients, caregivers, and doctors. Researchers found that the emotional-, role-, social-, and work-related aspects of caregivers' lives were affected by caring for patients with MM. The COVID-19 pandemic also affected the ability of patients to manage their MM because of limited hospital access and the effects of restrictions that impacted their lives and psychological well-being. Finally, the researchers identified some areas requiring improvement, including unproductive appointments with health care professionals, the need for treatments with fewer negative effects, and more support for patients with MM and their caregivers. This information may be useful to improve and understand the experience of patients with MM.
