Purpose
This study aimed to better understand the patient perspective and treatment experience of relapsed and/or refractory multiple myeloma (RRMM).
Methods
This qualitative study enrolled adult RRMM patients from 6 US clinics who had ≥ 3 months of life expectancy, ≤ 6 prior lines of therapy, and ≥ 1 treatment regimen with a proteasome inhibitor and immunomodulator, or a CD38 monoclonal antibody or an alkylating agent, and a steroid. In-person semi-structured qualitative interviews were conducted to capture concepts that were relevant and important to patients. Topics included RRMM symptoms and impacts and the mode of administration, frequency, duration, convenience, side effects, and overall experience with RRMM treatment.
Results
A total of 22 patients completed interviews. At enrollment, 59.1% of participants were using regimens containing dexamethasone, 36.4% daratumumab, 27.3% carfilzomib, and 18.2% lenalidomide. More participants had experience using intravenous or injectable therapy alone (40.9%) than oral therapy alone (18.2%). Back pain and fatigue were the most frequently reported symptoms (40.9% each); 27.3% reported no symptoms. Most participants reported physical function limitations (86.4%), emotional impacts (77.3%), MM-related activity limitations (72.7%), and sleep disturbances (63.6%). Most participants perceived treatment effectiveness based on physician-explained clinical signs (68.2%) and symptom relief (40.9%). Participants experienced gastrointestinal adverse events (59.1%), fatigue (59.1%), sleep disturbances (31.8%), and allergic reactions (31.8%) with treatment. Key elements of treatment burden included the duration of a typical treatment day (68.2%), treatment interfering with daily activities (54.5%), and infusion duration (50.0%).
Conclusions
These results provide treatment experience–related data to further understand RRMM treatment burden and better inform treatment decision-making.
Conclusion:This study provides further evidence of the benefit of continuing crizotinib therapy in Chinese patients with progressive ALK-positive NSCLC. Patients with a longer PFS1 and those who received local brain therapy had better survival with continued crizotinib therapy.
Objective
Availability of easy-to-understand patient-reported outcome (PRO) trial data may help individuals make more informed healthcare decisions. Easily interpretable, patient-centric PRO data summaries and visualizations are therefore needed. This three-stage study explored graphical format preferences, understanding, and interpretability of clinical trial PRO data presented to people with prostate cancer (PC).
Materials and Methods
A 7-day online survey exploring people with PC’s preferences for different PRO data presentations (stage 1; n = 30) informed development of a draft plain-language resource sheet containing PRO data. After refining for clarity during cognitive debriefing interviews (stage 2; n = 18), the final resource sheet was circulated to people with PC for broader feedback (stage 3; n = 45).
Results
Although participants expressed preferences for certain graphical formats (pie charts and bar charts), preference did not always associate with interpretability and overall message clarity. Iterative development (stages 1 and 2) led to a final resource sheet, which 91.1% of participants in stage 3 considered useful and informative, and 88.9% expressed interest in receiving similar resources in the future.
Discussion
Findings demonstrate PRO data are relevant to people with PC and highlights that targeted resource sheets can support patient–clinician discussions. Appropriate graphical formatting and use of plain-language text is essential for conveying interpretable PRO data. Data visualization preferences are context dependent.
Conclusion
Resource sheets summarizing clinical trial PRO data can be helpful for decision-making in PC. Researchers and patients can work together to develop clear, relevant, sensitive, and understandable resource sheets, which equally consider patient priorities as well as those of scientists.
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