Living with the burden of relapse in multiple myeloma from the patient and physician perspective.

Multiple myeloma (MM) is a progressive plasma cell malignancy, with a range of clinical features including bone lesions, renal insufficiency, anaemia, and hypercalcaemia. Novel agents have significantly improved patient survival, however most patients will suffer multiple relapses. Although clinical challenges and economic costs of relapse are recognised, the psychological impact of relapse is not fully appreciated. Additionally, there is little information on how physicians perceive the impact of relapse on their patients' emotional state and how this might affect patient management. Through face-to-face interviews with 50 relapsed and/or refractory MM patients and 30 haematologists across ten countries, we have used real-world evidence to explore and characterise the burden of living with MM, particularly the impact of relapsed disease. This exploratory study illustrates the impact of the disease on friends and family, and the physical and emotional burden experienced by the patient resulting from both MM and its treatment. Haematologists feel poorly equipped to deal with the emotional aspects of patient relapse, lacking the time and resources to adequately deal with these issues. Focused educational and support tools/resources targeted at both physicians and patients are required to facilitate physician-patient communication to help reduce the emotional burden of living with MM.

Role of the specialist nurse in caring for patients with myeloma.

Myeloma is a rare, heterogeneous cancer of the bone marrow. It is characterised by a range of comorbidities and clinical complications, including bone fractures, anaemia and kidney damage. Myeloma is an individual cancer both in terms of the symptoms and complications patients can experience and in their response to treatment. This means that patients require individual management and care from specialist nurses who provide information, education, and social and psychological support, as well as direct patient care. The different combinations of treatment include complicated chemotherapy and anti-myeloma regimens. These treatments result in an accumulation of toxicities in patients, which specialist nurses play a vital role in monitoring and managing. The support and care given by specialist nurses have an effect both on the patient experience and patient outcomes.