Any cancer causes high levels of physical burden and psychological distress to both patients and their caregivers. The bone marrow cancer, Multiple-Myeloma, is particularly burdensome, causing numbness and pain throughout the body.

Patients also experience muscle weakness and have low energy levels, getting tired from walking even short distances. They can also lose their appetite, have trouble sleeping and experience issues with memory and concentration.

MM is usually diagnosed between ages 65-75 and is 1.5 times more common in men than in women. In 2020 there were 176,404 new cases and 117,077 deaths globally. Though survival rates have improved in recent decades, due to the introduction of treatments such as autologous stem cell transplant (ASCT), proteasome inhibitors (PIs), immunomodulatory drugs (IMiDs), and monoclonal antibodies (mAbs), median overall survival rates (OS) remain low at only 6-8 years. This is because MM eventually become refractory to treatments and duration of response becomes shorter with every successive line of MM therapy. Once treatments fail, survival is rarely longer than a year, often only a few months.  

Some patients describe this refractory nature of as a ticking time-bomb. A worry constantly sitting at the back of their minds. Causing high levels of depression as patients in remission await the results of their monthly blood-tests. Anxious to know if, when, it has come back.

MM is a costly cancer to treat, commonly involving intensive treatment and sometimes stem-cell transplantation in advance stages. Such regimes require a large time commitment from patients and their caregivers. This can result in high out-of-pocked expenses and cause many patients to stop working and take early retirement. Particularly as it can be over a year after the initial treatment before patients gain improved quality of life. Impacts on the lives of informal caregivers can also be significant, especially as health care systems have tried to move care closer to the community and reduce hospital stays.

There is however a lack of linked direct & indirect costs data in this disease. In 2013 a questionnaire was mailed to 1015 patients asking about financial. Researchers received 765 returns. Finding 66% of respondents were employed at the time of diagnosis and treatment onset. However by the time they completed the study questionnaire, only 33% were employed. This is not surprising considering many patients have to stay away from home for weeks or even months for chemotherapy combined with daily laboratory monitoring.

Costs of informal community care have also had limited evaluation. In 2011 a study of 20 patients living with myeloma and 16 of their informal caregivers, mostly spouses found that 40% of patients experience symptoms of anxiety and depression. Also, emotional and practical cost of myeloma seemed to be higher in the caregivers, whose life often changed markedly after the diagnosis, eventually becoming ‘expert’ caregivers. The authors concluded that  “Limited information from the quality-of-life studies suggests that patients with myeloma have the highest level of symptoms and the lowest level of quality of life among other patients with haematological cancers, perhaps due to bone pain/ pathological fractures, fatigue/anaemia and recurrent infections due to immune compromise”

HCD Economics, believe it is important to conduct detailed, multi-sponsored Burden of Illness study (BOI) to assess the disease management pathway, associated costs, and quality of life from a societal perspective. With a primary objective of quantifying direct medical and direct non-medical costs. Along with a secondary objective to determine and quantify the impact of MM on health-related quality of life (HR-QoL).

A Discrete Choice Experiment, DCE could also be used to identify the relative importance and value of treatment characteristics. This approach could also be used to evaluate the value people might place on different aspects of care. Including increasing community care and improved palliative care for patients and caregivers.

Please contact to discuss any of these issues. Alison will also be attending the European Haematology Association,  EHA2023 Hybrid Congress in Frankfurt later this week.