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

High hospital-related burden of treatment for multiple myeloma patients: outcomes of a feasibility study using reimbursement data from electronic health records

Objective: Multiple Myeloma (MM) is an incurable plasma cell malignancy with intensive and prolonged treatment, presumably causing a considerable burden of treatment on patients. The concept of treatment burden is defined as the work of being a patient and its impact on well-being. However, there is no consistent definition and method to measure treatment burden in patients with MM. Therefore, the aim of this study was to determine the burden of treatment in MM patients and to compare it to Chronic Lymphoid Leukaemia (CLL). Methods: We conducted a retrospective analysis using reimbursement data from electronic health records (EHR) to calculate treatment burden. Treatment burden was defined as the number of hospital visits on unique days. After data clearance, data were analysed using descriptive statistics comparing treatment burden between different types of visits, age groups, years since diagnosis, and between MM and CLL patients. Results: Reimbursement data of 176 MM and 173 CLL patients were included in the analysis, which showed i) highest treatment burden in the first year immediately after diagnosis, ii) small differences between age groups (total visits year 0: 68.2 ≤ 65/63.8>65 years in MM and 21.7 ≤ 65/25.6>65 years in CLL), iii) higher treatment rates with more treatment burden in MM patients compared to CLL. Conclusion: EHR reimbursement data provided useful information to measure treatment burden and showed higher burden in MM patients compared to CLL patients. With improving survival, measuring burden of treatment in clinical practice in patients with MM contributes to decreasing treatment burden and more patient-centred care. Conclusion: EHR reimbursement data provided useful information to measure treatment burden and showed higher burden in MM patients compared to CLL patients. With improving survival, measuring burden of treatment in clinical practice in patients with MM contributes to decreasing treatment burden and more patient-centred care. Public interest summary: As in other malignant diseases, new treatment options dramatically improved survival in patients with multiple myeloma (MM). As a consequence, MM patients undergo intensive and intermittent periods of treatment, which causes a considerable burden of treatment. In this study we used data retrieved from Electronic Health Records (EHR) from 176 patients with MM and 173 patients with chronic lymphoid leukaemia (CLL) (both haematological diseases), to measure and analyse patients’ burden of undergoing treatment. The results showed that EHR-data provided useful information to determine treatment burden in patients and that treatment burden is considerably higher in patients with MM compared to CLL patients. Further development of this method makes it possible to frequently monitor and evaluate treatment burden. Eventually, this may help health care professionals to provide more patient-centred care and improve quality of life by reducing treatment burden

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) se

Mechanical testing of electrospun PCL fibers

Poly(ε-caprolactone) (PCL) fibers ranging from 250 to 700 nm in diameter were produced by electrospinning a polymer tetrahydrofuran/N,N-dimethylformamide solution. The mechanical properties of the fibrous scaffolds and individual fibers were measured by different methods. The Young’s moduli of the scaffolds were determined using macro-tensile testing equipment, whereas single fibers were mechanically tested using a nanoscale three-point bending method, based on atomic force microscopy and force spectroscopy analyses. The modulus obtained by tensile-testing eight different fiber scaffolds was 3.8 ± 0.8 MPa. Assuming that PCL fibers can be described by the bending model of isotropic materials, a Young’s modulus of 3.7 ± 0.7 GPa was determined for single fibers. The difference of three orders of magnitude observed in the moduli of fiber scaffolds vs. single fibers can be explained by the lacunar and random structure of the scaffolds

AFM-based mechanical testing of electrospun PCL fibers

Poly(ε-caprolactone)(PCL forms a part of the aliphatic polyesters; the biodegradable and biocompatible character of these polymers makes them outstanding candidates for short-to medium-term biomedical applications, especially in the form of nanometric fibers,as their assembly mimics the extracellular matrix structure. However, a prerequisite to their application as nanofibrous biomaterial scaffolds is the investigation of their mechanical strength. In the present study, PCL fibers produced by electrospinning were individually tested using an AFM-based nano-scale three-point bending technique

Chitosan nanofiber membranes for tissue engineering - synthesis, characterization and properties

This poster was presented by Natalia Tonchev

Improving Outcome‑Driven Care in Multiple Myeloma Using Patient‑Reported Outcomes: A Qualitative Evaluation Study

Background and Objective: Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients’ quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the three objectives of outcome-driven care, which are defined as (1) providing information for shared decision making in individual patient care, (2) supporting the learning capacity of healthcare professionals and healthcare institutions through benchmarking and (3) developing outcome-driven and patient-centred contracting by health insurers. Methods: In this qualitative study, semi-structured interviews about experiences with patient-reported outcomes were conducted with patients, healthcare professionals and other stakeholders 2 years after implementation. Data were thematically analysed, and emerging topics were clustered around the three objectives of outcome-driven care. Results: A total of 46 interviews were held (15 with patients, 16 with professionals and 15 with other stakeholders) that showed patients with multiple myeloma were willing to complete patient-reported outcomes, although integration of patient-reported outcomes in shared decision making fell short in clinical practice. Aggregated patient-reported outcomes were considered important for improving quality of care; however, data collection and data exchange are hindered by privacy legislation, limitations of IT systems and a lack of data standards. Patient-reported outcomes were expected to contribute to cost-effective multiple myeloma treatment, yet outcome-driven reimbursement is still lacking. Conclusions: Outcome-driven multiple myeloma care using patient-reported outcomes is feasible, provided that (1) patient-reported outcomes and shared decision making are integrated into clinical practice, (2) legal and technical obstacles hindering data collection are removed and (3) health insurers adjust their reimbursement plans to facilitate outcome-driven care