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Stephanie J. Lee

Multiple myeloma is an incurable malignancy of plasma cells. People with multiple myeloma may experience a variety of disease-related symptoms because of bony destruction, bone marrow infiltration, renal failure, immunodeficiency, and the psychosocial burden of a cancer diagnosis. Exciting new therapies and treatment approaches are becoming available but often bring unwanted side effects. Because the goal of treating multiple myeloma is still symptom palliation and prolongation of life rather than cure, it is important to consider the tradeoffs between treatment toxicity and disease control when caring for the person with myeloma. The traditional end-points of clinical trials are disease response, prolongation of disease-free and overall survival, and other objective criteria. However, subjective patient-reported measures, such as symptoms, quality of life, and functional status, are increasingly recognized as important dimensions by which to judge the impact of cancer and its treatment. In multiple myeloma, several patient-reported measures have been used to enrich our understanding of the disease's impact on patients' lives and the risks and benefits of specific treatments.

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Nandita Khera, Jessica Sugalski, Diana Krause, Richard Butterfield III, Nan Zhang, F. Marc Stewart, Robert W. Carlson, Joan M. Griffin, S. Yousuf Zafar and Stephanie J. Lee

Background: Financial distress from medical treatment is an increasing concern. Healthcare organizations may have different levels of organizational commitment, existing programs, and expected outcomes of screening and management of patient financial distress. Patients and Methods: In November 2018, representatives from 17 (63%) of the 27 existing NCCN Member Institutions completed an online survey. The survey focused on screening and management practices for patient financial distress, perceived barriers in implementation, and leadership attitudes about such practices. Due to the lack of a validated questionnaire in this area, survey questions were generated after a comprehensive literature search and discussions among the study team, including NCCN Best Practices Committee representatives. Results: Responses showed that 76% of centers routinely screened for financial distress, mostly with social worker assessment (94%), and that 56% screened patients multiple times. All centers offered programs to help with drug costs, meal or gas vouchers, and payment plans. Charity care was provided by 100% of the large centers (≥10,000 unique annual patients) but none of the small centers that responded (<10,000 unique annual patients; P=.008). Metrics to evaluate the impact of financial advocacy services included number of patients assisted, bad debt/charity write-offs, or patient satisfaction surveys. The effectiveness of institutional practices for screening and management of financial distress was reported as poor/very poor by 6% of respondents. Inadequate staffing and resources, limited budget, and lack of reimbursement were potential barriers in the provision of these services. A total of 94% agreed with the need for better integration of financial advocacy into oncology practice. Conclusions: Three-fourths of NCCN Member Institutions reported screening and management programs for financial distress, although the actual practices and range of services vary. Information from this study can help centers benchmark their performance relative to similar programs and identify best practices in this area.