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.</p

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.</p

Guidelines for the Use and Reporting of Patient-Reported Outcomes in Multiple Myeloma Clinical Trials

In the era of personalized medicine there is an increasing need for the assessment of patient-reported outcomes (PROs) to become a standard of patient care. Patient-reported outcome measures (PROM) are important in assessing significant and meaningful changes as a result of an intervention based on a patient’s own perspective. It is well established that active multiple myeloma (MM) can be characterized by a high burden of disease and treatment-related symptoms, with considerable worsening of quality of life (QoL). In general, and over the past decade, the focus has shifted to obtaining the most durable remissions with the best QoL as primary goals for MM treatment. Patients place considerable value on their QoL and communicating about QoL data prior to treatment decisions allows them to make informed treatment choices. Consequently, optimization of QoL of patients with MM is an important therapeutic goal and the incorporation of PROs into clinical trials has the potential of improving treatment outcomes. In this regard, guidance for the use and reporting of PROMs in MM in clinical trials is warranted. Under the auspices of the European Hematology Association, evidence-based guidelines for the use and reporting of PROs in patients with MM have been developed according to the EHA’s core Guidelines Development Methodology. This document provides general considerations for the choice of PROMs in MM clinical trials as well as a series of recommendations covering a selection of PROMs in MM clinical trials; the mode of administration; timing of assessments; strategies to minimize missing data; sample size calculation; reporting of results; and interpretation of results.</p

Guidelines for the Use and Reporting of Patient-Reported Outcomes in Multiple Myeloma Clinical Trials

© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Simple Summary: It is recognized that patients with multiple myeloma (MM) experience a high burden of disease and treatment-related symptoms that impact upon their quality of life (QoL). In these patients, patient-reported outcome (PRO) measures are important in providing information on how treatment affects their QoL. In the past 10 years in the MM setting, the main focus has been to achieve the most durable remission with the best QoL as primary goals of therapy. Optimizing the QoL of patients with MM is an important treatment goal and the use of PROs in clinical trials has the potential to improve treatment outcomes. The present report, on behalf of the European Hematology Association (EHA), provides evidence-based guidelines for the use and reporting of PROs in patients with MM that have been developed according to the EHA’s core Guidelines Development Methodology. Currently, there is considerable variation in the measurement of QoL in MM trials, thus underlining the importance of systematic measurements. These Guidelines will aid clinicians, regulatory agencies and the pharmaceutical industry in the measurement of QoL in patients with MM in clinical trials. Abstract: In the era of personalized medicine there is an increasing need for the assessment of patient-reported outcomes (PROs) to become a standard of patient care. Patient-reported outcome measures (PROM) are important in assessing significant and meaningful changes as a result of an intervention based on a patient’s own perspective. It is well established that active multiple myeloma (MM) can be characterized by a high burden of disease and treatment-related symptoms, with considerable worsening of quality of life (QoL). In general, and over the past decade, the focus has shifted to obtaining the most durable remissions with the best QoL as primary goals for MM treatment. Patients place considerable value on their QoL and communicating about QoL data prior to treatment decisions allows them to make informed treatment choices. Consequently, optimization of QoL of patients with MM is an important therapeutic goal and the incorporation of PROs into clinical trials has the potential of improving treatment outcomes. In this regard, guidance for the use and reporting of PROMs in MM in clinical trials is warranted. Under the auspices of the European Hematology Association, evidence-based guidelines for the use and reporting of PROs in patients with MM have been developed according to the EHA’s core Guidelines Development Methodology. This document provides general considerations for the choice of PROMs in MM clinical trials as well as a series of recommendations covering a selection of PROMs in MM clinical trials; the mode of administration; timing of assessments; strategies to minimize missing data; sample size calculation; reporting of results; and interpretation of results.Peer reviewe