BACKGROUND: Multiple myeloma (MM) is an incurable hematological malignancy, and during the illness course, patients face a range of disease symptoms and treatment side effects, making therapeutic management a challenging process. There is currently a shortage of data on the treatment decision-making process from the patient perspective, and published literature and patient-reported information (PRI) shared on social media could be a potential source for this evidence.
AIMS: A combined research methods approach using a review of published literature and social media posts was conducted to better understand treatment decisions associated with MM from the patient perspective.
METHODS: Targeted searches of PubMed and PsycINFO were conducted from 2010 to November 2020 to identify articles covering the patient voice of the burden and treatment of MM. Titles and abstracts were screened for relevance by 2 experienced reviewers with the most relevant full-text articles selected for inclusion in the review. To supplement this, searches for PRI were conducted of relevant patient advocacy websites (e.g., Patient Power, The Patient Story, Cure Today) and YouTube. Posts were included for review if shared by adults with a self-reported diagnosis of MM and had content relating to the patient experience of MM and its treatment. Demographic and disease characteristics at the time of the post were recorded where available.
RESULTS: From a total of 374 articles identified in the literature search and 2,575 posts identified in the social media search, 27 articles and 138 posts were included in the review. Of these, 3 articles and social media posts from 19 patients reported information on patient views regarding treatment decision making. Patients with newly diagnosed MM (N = 7) reported feeling that their life and independence were being taken away and expressed shock at the number of therapeutic decisions. Evidence from the literature (3 articles) stated that a high percentage of patients expressed a desire to be included in treatment decisions but results from the social media posts (N = 5 patients) showed that some felt that they were not consulted by the treating physician before being assigned therapy. In the literature, patients (all treatment lines) reported that finding the most capable specialist and having trust in their health care provider was key (2 articles). From the PRI sources, patients receiving later lines of therapy (N = 10) stated that communication of comprehensive information was important and valued engagement in shared decision making; in this group, treatment effectiveness had the greatest influence on choice. Side effects were a lower concern for patients who had been on therapy for a long time versus patients receiving induction therapy (1 article). Despite this, patients on social media (N = 2 patients) valued the flexibility of being able to decide when to start or break from treatment to fit in with other life events such as holidays or important family occasions.
CONCLUSIONS: The patient perspective on participation in treatment decisions is an important factor in the MM patient journey, and our research showed that, in published literature and on social media, patients appreciate involvement in deciding treatment options. Our review highlights the importance of further understanding patient perspectives on their role and input into treatment decision making with the health care professional; patients value inclusion in the process, and this is an area that is important for improving the overall quality of care for the patient.
