Changes in income and employment after diagnosis among patients with multiple myeloma in The Netherlands.

OBJECTIVE: Due to new treatment options, survival rates in multiple myeloma (MM) are improving. Consequently, maintaining work and income is becoming more important for patients and society. Therefore, we aimed to explore the change in income and employment in patients with MM. METHODS: Data from the Netherlands Cancer Registry of MM patients diagnosed between 2012 and 2017 were merged with socioeconomic data from Statistics Netherlands. Descriptive statistics were used to analyse total income, income from employment, and accumulated income before and after diagnosis. RESULTS: Income from employment decreased by 45% in MM patients, between 1 year before and 4 years after diagnosis Four years after diagnosis, 35% of the patients were still employed, with an accumulated 5-year productivity loss of €121 million. Higher income loss from employment and job loss was observed in female patients, patients with more extensive disease, or those not treated with autologous stem cell transplant. CONCLUSION: Loss of (income from) employment among patients with MM was high, causing financial burden on the patient and society. With improving survival in MM, more research and awareness are needed to better assess the importance of income and work for MM patients and society.

Access to and affordability of CAR T-cell therapy in multiple myeloma: an EBMT position paper.

Chimeric antigen receptor (CAR) T-cell therapy is a promising immunotherapeutic approach in the treatment of multiple myeloma, and the recent approval of the first two CAR T-cell products could result in improved outcomes. However, it remains a complex and expensive technology, which poses challenges to health-care systems and society in general, especially in times of crises. This potentially accelerates pre-existing inequalities as access to CAR T-cell therapy varies, both between countries, depending on the level of economic development, and within countries, due to structural disparities in access to quality health care-a parameter strongly correlated with socioeconomic status, ethnicity, and lifestyle. Here, we identify two important issues: affordability and access to CAR T-cell treatment. This consensus statement from clinical investigators, clinicians, nurses, and patients from the European Society for Blood and Marrow Transplantation (EBMT) proposes solutions as part of an innovative collaborative strategy to make CAR T-cell therapy accessible to all patients with multiple myeloma.

Perspectives on returning to work of multiple myeloma patients: A qualitative interview study.

OBJECTIVE: Multiple myeloma (MM) is a rare and incurable disease. Because new treatments improved survival rates, return to work (RTW) became more relevant to MM patients of working age. Also, (health care) experts may be confronted with specific obstacles in guiding MM patients' RTW. Therefore, we aimed to qualitatively explore perspectives and experiences of MM patients and (health care) experts regarding RTW and participation at work. METHODS: Semi-structured interviews were conducted with patients (N = 9) and (health care) experts (N = 15). Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Four themes resulted from the interviews with patients and (health care) experts: (1) severity of diagnosis and treatment impact RTW, (2) step-by-step reintegration facilitates RTW, (3) meaning of work differs between MM patients and experts and (4) lack of tailored counselling by experts. CONCLUSION: Although MM patients' work ability may be limited due to the severity of diagnosis and side effects from treatment, most patients consider RTW important. Both patients and (health care) experts emphasise the benefits from early work ability assessment (in the hospital setting) and specialised RTW counselling, especially in those with physically demanding jobs.