The objectives of this study were to ascertain the treatment preferences of patients with multiple myeloma, considering benefits and risks of particular cancer treatments, and to illustrate how such data may be used to estimate patients' acceptance of new treatments.

Background: Investigational and marketed drugs for the treatment of multiple myeloma (MM) are associated with a range of characteristics and uncertainties regarding long term side-effects and efficacy. This raises questions about what matters most to patients living with this disease. This study aimed to understand which characteristics MM patients find most important, and hence should be included as attributes and levels in a subsequent quantitative preference survey among MM patients.Methods: This qualitative study involved: (i) a scoping literature review, (ii) discussions with MM patients (n = 24) in Belgium, Finland, Romania, and Spain using Nominal Group Technique, (iii) a qualitative thematic analysis including multi-stakeholder discussions.Results: MM patients voiced significant expectations and hopes that treatments would extend their lives and reduce their cancer signs and symptoms. Participants however raised concerns about life-threatening side-effects that could cause permanent organ damage. Bone fractures and debilitating neuropathic effects (such as chronic tingling sensations) were highlighted as major issues reducing patients' independence and mobility. Patients discussed the negative impact of the following symptoms and side-effects on their daily activities: thinking problems, increased susceptibility to infections, reduced energy, pain, emotional problems, and vision problems. MM patients were concerned with uncertainties regarding the durability of positive treatment outcomes, and the cause, severity, and duration of their symptoms and side-effects. Patients feared short-term positive treatment responses complicated by permanent, severe side-effects and symptoms.Conclusions: This study gained an in-depth understanding of the treatment and disease-related characteristics and types of attribute levels (severity, duration) that are most important to MM patients. Results from this study argue in favor of MM drug development and individual treatment decision-making that focuses not only on extending patients' lives but also on addressing those symptoms and side-effects that significantly impact MM patients' quality of life. This study underscores a need for transparent communication toward MM patients about MM treatment outcomes and uncertainties regarding their long-term efficacy and safety. Finally, this study may help drug developers and decision-makers understand which treatment outcomes and uncertainties are most important to MM patients and therefore should be incorporated in MM drug development, evaluation, and clinical practice.

BackgroundFew studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2‐arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability.ObjectiveTo explore views and motivations towards a proposed 2‐arm stem cell trial and identify factors that may impede and enhance participation.DesignThis study adopts a naturalistic design to explore the complexity of this field, employing a participatory action‐research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40‐75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach.Discussion and ConclusionStroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post‐trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2‐arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation.

Background: Myeloma is an incurable life-threatening hematological cancer. Recent treatment developments have seen improvements in survival; however, while patients are living longer, they are living with symptoms and treatment side effects. Objective: To evaluate myeloma patients' preferences for treatment using a discrete choice experiment (DCE). This study set out to define the relative importance of key treatment attributes, characterize the risk-benefit trade-offs in patients' decision-making, and to analyze the predictive power of basic demographic factors. Methods: Four hundred seventy-five myeloma patients in the UK were invited to participate by Myeloma UK. Data were collected using DCEs through an online survey. The DCEs presented patients with 10 choice scenarios, each with 2 treatment options described by 7 attributes, and a "no treatment" option. The DCE data were modelled using a latent class model (LCM). The effects of demographic characteristics were also examined. Results: Not surprisingly, average survival was most important to all patients but there were significant contrasts between the class preferences. The LCM revealed two classes of patients. Patients in Class 1 placed greater importance on average survival and mild-tomoderate side effects, whereas patients in Class 2 focused on the mode of administration and the average out-of-pocket costs. Patients living with others and those diagnosed in the last 5 years were more likely to be in Class 1. Conclusion: Different treatment features were not valued equally among all myeloma patients. This has important implications for healthcare policy decisions and could be used to guide decisions around the value of new myeloma medicines.

Popular themes arising from each group were the benefit of dreams, the importance of empathy, staff communication, and fundraising. Implications for the charity and third sector are discussed.