Newly Diagnosed 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 that has one of the longest times to diagnosis of all cancers. Patients commonly present with non-specific symptoms, including bone pain or fractures, recurrent infections, fatigue or renal failure alongside other symptoms that represent a significant disease burden. Whilst treatments aim to provide patients with prolonged periods of remission, the physical and psychological instability experienced by newly diagnosed multiple myeloma (NDMM) patients and carers is poorly understood.

Aims: Explore the psychological disease burden and treatment attitudes of people affected by NDMM in the UK. Examine the psychosocial impact at each point of the treatment journey for NDMM, and how shared decision-making can be fostered between patients and clinicians.

Methods: Qualitative, semi-structured interviews were conducted with 11 participants (8 patients, 3 carers) to explore their experiences of diagnosis, treatment, care and their definition of achieving better quality of life (QoL). Data was analysed using Interpretative Phenomenological Analysis (IPA) and undertaken in Dedoose to identify themes capturing the key aspects of their experiences.

Results:Four themes were identified:

The route to informed diagnosis and treatment described how some patients reported feelings of trivialisation of their early symptoms, which contributed to diagnostic delays, with some attending the emergency room in the lead up to diagnosis. Several participants perceived GPs as ‘expert generalists’ - having broad knowledge to diagnose common conditions, but lacking expertise to help effectively diagnose this rare cancer. Information to support patient access and understanding of their test results was viewed as essential at diagnosis and ongoing monitoring, helping patients feel more in control in the early phases of their disease. Patients were aware that blood test results, specifically elevated light chain results, indicated a poorer response to treatment, resulting in increased levels of anxiety at follow-up.

Prioritising psychological wellbeing post-diagnosis focused on the unmet need to prioritise the mental health of patients and caregivers in the first six months following diagnosis. Some participants reported that their health professionals did consider their psychological wellbeing when presenting treatment information, however others had opposing experiences. Those patients and caregivers who did not receive regular emotional check-ins from their clinical teams felt uninvolved in their treatment and alone. Beyond six months, patients became better adjusted to the rhythm of treatments and consultations.

Redefining quality of life despite side-effects highlighted how insomnia, fatigue and mood-swings from steroids affected physical, cognitive and emotional capabilities. Some patients resorted to sleeping tablets to counteract “steroid rage” whilst others restricted their hobbies and activities to preserve sufficient energy to last the day.

Autologous Stem Cell Transplantation (ASCT) as a moving target highlighted the complexity of ASCT decision-making, with patients reconciling a demanding treatment regimen against benefits that were hoped to, but could not guarantee to provide, a lengthy remission. Patients who had been through ASCT reflected on feeling unprepared for some of the harshest side-effects, such as mucositis.

Conclusions:There is a clear opportunity to improve psychological support for patients and caregivers early in the diagnostic pathway, by encouraging clinicians to ask patients and caregivers about their emotional needs. Tailored support for caregivers should include simplified treatment plan descriptions, and guidance to help them support patients to manage the side effects of treatment, particularly ASCT. Future work should focus on improving GP education to increase the speed of diagnosis as delays negatively impact outcomes.