Double-Class Exposed Patient and Carer Experiences of Living with Multiple Myeloma
Authors: Ali Noreen , Kuttschreuter Luke , Quinn Sandra CM , Wood Sam , Harris Rick 
Published: December 2024

Introduction: Multiple myeloma (MM) is a rare, heterogenous, progressive plasma cell disorder. Whilst no cure is available, the use of anti-CD38 monoclonal antibodies, proteasome inhibitors, immunomodulatory drugs, and autologous stem cell transplantation (ASCT)aim to control the disease and place patients into prolonged periods of remission. Patients who have relapsed/are refractory in two of the major classes of treatments above are categorised as having ‘double-class exposed’ MM (DCEMM). For people with DCEMM, their first experience of relapse has important psychological and treatment implications that need to be carefully considered and managed in clinical practice.
Aims: Explore the psychological disease burden and treatment attitudes of people affected by DCEMM in the UK. Establish the psychosocial impact at each point of the treatment journey of a DCEMM patient, and the evolution of shared decision-making between patients and clinicians.
Methods: Qualitative, semi-structured interviews were conducted with 12 participants (9 patients, 3 carers) to explore their experiences of diagnosis, treatment, care and Quality of Life (QoL). Data was analysed using Interpretative Phenomenological Analysis (IPA) and undertaken in Dedoose to identify themes that captured key aspects of their experiences.
Results:Three themes were identified:
The road to remission and relapse described healthcare professionals (HCPs) opinions on autologous stem cell transplantation (ASCT) as the optimal route to full or partial remission. Several participants became hypervigilant of test results during treatment and periods of remission where they were concerned about relapsing post-ASCT. The lack of certainty and predictability of treatment outcomes was distressing for many participants. Some patients had a longer period of remission, whilst some patients were left disappointed when their MM had returned sooner than expected, making it difficult to adjust to their situation. However, most patients remained optimistic, expressing a sense of hope in future treatments and clinical trials. Whilst some were hopeful about their future, some patients perceived the UK clinical trial space as ‘lagging‘ behind the USA and Europe, specifically the longer approval timeline.
Seeking stability focused on the psychological burden of working towards progression-free survival, managing complex drug regimens, coping with ongoing pain and fatigue (including in remission) and living in-the-now to maximize certainty during uncertainty. Most patients reported there was access to pain clinics, however they had to self-manage their fatigue. Concerns around loss of employment, mobility, independence and self-worth, demonstrated the broader negative impact of DCEMM on QoL. Overall, there was an unmet need from DCEMM patients to receive clear and practical sources of psychological support, and tools to manage fatigue to enable them to live well.
A more proactive role in managing treatment burden highlighted the confidence patients gained during treatment, and how that translated into proactive patient-led conversations during consultations. This in turn enabled patients to discuss optimisation of treatment, such as reducing side effects from steroids via dose reductions or changes to regimens. Participants became less accepting of a system they perceived as directing them along a usual-care treatment pathway. Access to treatments were described as having ‘tick box‘ criteria that did not reflect how DCEMM was individually experienced. Instead, patients sought a more personalised approach to treatment, including HCPs proactively seeking out individual feedback from patients and adjusting treatments to align with their personal preferences and priorities; patients spoke highly of HCPs using this approach.
Conclusions:There are key opportunities for HCPs to improve the journey for people affected by DCEMM, starting with shared expectations around the timeframe of remission. There is also a need for integrated psychological interventions to support patient's sense of self and autonomy to enhance their QoL. Despite being aware of an increasing number of treatment options, DCEMM patients and caregivers felt access was restrictive and rigidly assessed. Shared decision-making was the preferred approach to treatment management and allowed for better outcomes.