Poster Session I: Quality of life, palliative & supportive care, ethics and health economics
Multiple Myeloma (MM) severely impacts patients' and carers' QoL whether the MM is newly diagnosed or relapsed and/or refractory (RRMM). Qualitative and preference evidence from patients and carers can extend current understanding of the nature of this impact and what's important to patients and carers.
This study aimed to provide insights on patient and carer QoL, and treatment priorities in MM and RRMM, by integrating published quantitative and qualitative evidence with additional qualitative results from interviews and focus groups with UK patients and carers.
Evidence from four data sources was synthesised by meta-summary:
Data were extracted and summarised separately by method, then pooled in a results matrix to identify and synthesise key themes across the evidence-base (32 studies: 27 with patients, five with carers).
Key themes for patients with MM were diagnosis (non-specific symptoms, shock, slow/delayed process), the life-changing nature of MM, living with a compromised immune system, fatigue and intense treatment schedules, and their impacts on QoL (restricted family, leisure and social activities). At the RRMM stage, patient experience was dominated by the emotional burden of living with uncertainty and unpredictability around relapse and future treatment. Carers provided extensive and varied support to RRMM patients, taking on additional responsibilities in everyday life and treatment (preparing special diets, attending appointments, administering injections, helping monitor and manage medication, symptoms and side effects) and reported unmet information and support needs. RRMM had extensive impact on carers as well as patients, including their ability to work, activity restrictions, emotional strain and physical effects (sleep, cognition, exhaustion).
For most patients, controlling MM to achieve longer remission and extend life was the key treatment outcome. Balancing treatment effectiveness with side effects varied as a patient priority according to illness stage; newly diagnosed patients placed greater importance on overall survival, with remission more important than side-effects. Patients who had lived longer with MM were relatively more concerned with out-of-pocket expenses and mode of treatment delivery. Patients with RRMM prioritised treatments with minimal impact on life (e.g. oral treatment) and for some QoL was more important than effective treatment. Carers also wanted treatment to bring stability to their lives and restore or maintain shared activities. Patients and carers felt that treatments administered at home offered a more normal life but for carers, home treatment could add to their responsibilities.
This synthesis of qualitative and quantitative evidence from published and new sources provides a fuller picture of the experience and impact of MM and RRMM for patients and carers. The study highlights patient and carer priorities for treatment to guide healthcare practice and future research.