BACKGROUND: Patients with multiple myeloma (MM) report considerable disease- and treatment-related impacts on their health-related quality of life (HRQOL) despite improvements in treatment strategies over the past 5 years. Patient-reported information (PRI) shared on social media provides a unique opportunity to explore unsolicited patient data to understand patients’ perspectives outside of the formal research context.
AIMS: A combined research methods approach was conducted of a review of published literature and social media posts to better understand the MM patient disease and treatment experience.
METHODS: Targeted searches of PubMed and PsycINFO were conducted from 2010 to November 2020 to identify articles describing the humanistic burden of MM and its treatment from the patient perspective. Titles and abstracts were screened for relevance by two experienced reviewers, with relevant articles included in the review. In parallel, PRI derived from social media posts from five patient advocacy websites and YouTube were included. English-language posts were reviewed if shared by adults with a self-reported MM diagnosis and content was relevant to patient MM and treatment experience. Patients’ demographic and disease characteristics were extracted from posts (where available), and the posts were analyzed thematically.
RESULTS: A total of 27 articles and 138 posts were included in the final review (79 videos/58 blog posts/1 podcast). The review included PRI from 76 individuals (38 males/38 females). Seven contributors provided more than one source of data (i.e., blog and/or video). Key symptoms reported by the PRI: pain (n = 24), fatigue (n = 10), fractures (n = 9), and infections (n = 6). Substantial impairments to patients’ HRQOL were reported in terms of patients’ physical functioning (n = 11), emotional and psychological well-being (n = 26), relationships (n = 13), and work (n = 8). Patients with MM tend to experience multiple treatments during their MM journey in pursuit of remission. Patients reported that the impact of their MM treatments can often be more detrimental to their HRQOL than the disease itself (n = 2). Patients can experience a range of long-lasting and durable side effects from their different MM treatments, including neuropathy (n = 3), fatigue (n = 3), nausea (n = 2), and cognitive dysfunction (n = 2). Steroids (n =7) were particularly burdensome for patients due to the numerous and sometimes severe side effects, including sleep disturbances, weight gain, and the detrimental effect on patients’ mood. Treatment expectations were reported by 6 patients in the PRI: hopes and expectations of delaying disease progression and prolonging life are often counterbalanced by the negative consequences and burden of therapies (e.g., side effects/social isolation/financial impact).
CONCLUSIONS: The combination of published literature and PRI provided valuable and rich information on the patient experience and perceptions of MM and its treatment. Frequently reported themes in PRI included the symptom burden and HRQOL impact of MM as well as the burden associated with treatment. These key issues were also illustrated by results of the literature review. The data highlighted that the MM patient journey is multifaceted; patients’ HRQOL is impeded not only by the disease but also by the treatment-related side effects, which can have a substantial and long-lasting impact on patients’ lives.
