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Background: The purpose of this manuscript is to describe health-related quality of life (HRQoL) outcomes in a United States (US)-based sample of multiple myeloma (MM) patients and identify characteristics associated with poor HRQoL., Patients and Methods: MM patients identified through the Tumor Registry of a Southeastern US medical center were mailed surveys assessing patient characteristics and HRQoL outcomes. HRQoL outcomes were measured using PROMIS short form instruments which included measures of global health (global physical health and global mental health), physical function, and ability to participate in social roles and activities (social function). HRQoL domain scores were summarized, and best subset linear regression was used to identify predictors of HRQoL., Results: A total of 690 patients completed and returned surveys for a response rate of 64.7%. Respondents reported global physical health (44.9), global mental health (47.5), and physical function (44.1) significantly worse than the general population mean of 50 (p < .0001). Social function (49.5) did not differ significantly (p = .09). Worse socioeconomic status, higher comorbidities, not being in remission, and past receipt of radiation therapy were significantly associated with worse HRQoL. Treatment status and time since diagnosis were not associated with HRQoL outcomes., Conclusions: Patients with MM have significantly worse HRQoL than the general population. These findings warrant increased attention from clinicians and researchers. More research is needed to better describe the relationship between treatment patterns and HRQoL in patients with MM, and to identify effective interventions., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: Patients (≥60 years) with acute myeloid leukemia (AML) often receive intense health care utilization at the end of life (EOL). However, factors associated with their health care use at the EOL are unknown. Methods: We conducted a secondary analysis of 168 deceased patients with AML within the United States. We assessed quality of life (QOL) (Functional-Assessment-Cancer-Therapy-Leukemia), and psychological distress (Hospital-Anxiety-and-Depression Scale [HADS]; Patient-Health-Questionnaire-9 [PHQ-9]) at diagnosis. We used multivariable logistic regression models to examine the association between patient-reported factors and the following outcomes: (1) hospitalizations in the last 7 days of life, (2) receipt of chemotherapy in the last 30 days of life, and (3) hospice utilization. Results: About 66.7% (110/165) were hospitalized in the last 7 days of life, 51.8% (71/137) received chemotherapy in the last 30 days of life, and 40.7% (70/168) utilized hospice. In multivariable models, higher education (odds ratio [OR] = 1.54, p  = 0.006) and elevated baseline depression symptoms (PHQ-9: OR = 1.09, p  = 0.028) were associated with higher odds of hospitalization in the last seven days of life, while higher baseline QOL (OR = 0.98, p  = 0.009) was associated with lower odds of hospitalization at the EOL. Higher baseline depression symptoms were associated with receipt of chemotherapy at the EOL (HADS-Depression: OR = 1.10, p  = 0.042). Higher education was associated with lower hospice utilization (OR = 0.356, p  = 0.024). Conclusions: Patients with AML who are more educated, with higher baseline depression symptoms and lower QOL, were more likely to experience high health care utilization at the EOL. These populations may benefit from interventions to optimize the quality of their EOL care.

Context: The prevalence of venous thromboembolism (VTE) in patients with cancer is particularly high at disease progression and during relapse. Patients cared for in specialized palliative care units (SPCU) are rarely included in VTE studies. Objective: We sought to study the prevalence, clinical characteristics, and survival of individuals with VTE in an SPCU setting., Methods: We retrospectively included 2707 consecutive individuals with active cancer managed at a SPCU. Data were summarized using descriptive statistics and frequency for categorical variables. Overall survival was estimated by Kaplan-Meier and comparisons by log-rank test. Thrombotic events were confirmed by imaging., Results: We studied 1984(73.3%) women and 723 (26.7%) men. The overall prevalence of thrombosis was 22.2% with only 6.2% occurring after initiating SPCU care, and was higher in women (24.6% vs 15.8%), particularly with gynecological tumors (cervical: 30.5%, ovarian: 29.2%). Median survival was slightly longer for patients without VTE (80 days [IQR21-334] and 69 days [IQR 25-235]; p = 0.03)., Conclusions: Prevalence of VTE was high and varied by tumor origin. VTE may impact survival. Though median survival is short, some patients are followed over months, suggesting that in the absence of high bleeding risk, treatment for thrombosis in an attempt to decrease the morbidity of re-thrombosis should be considered. On the other hand, few patients developed symptomatic VTE during SPCU care, making generalized primary prophylaxis probably unwarranted. Customizing anticoagulation for the risk of hemorrhage and physical performance is essential.

Background and Aims: Acute myeloid leukemia (AML) prognosis is poor, with sustained remission occurring in <35% of young adults and <15% of older adults. This descriptive study examined the potential benefit of prolonged remission on the economic burden of AML., Methods: Using the IBM MarketScan Commercial and Medicare Supplemental databases, we identified newly diagnosed patients with AML without hematopoietic stem cell transplantation from January 1, 2012 to December 31, 2018; AML diagnosis was the index date. Patients had 6 months of pre-index eligibility and were followed until the end of continuous eligibility, study data, or death. Active treatment and supportive care cohorts were defined; duration-of-remission subgroups (0 to <3, 3 to <6, 6 to <12, and ≥12 months) were established among active treatment patients with remission. Healthcare service utilization and costs were reported over follow-up and mutually exclusive treatment, remission, and post-relapse periods., Results: This study included 1,558 active treatment and 1,127 supportive care patients who were followed for a median of 232 and 62 days, respectively. Over follow-up, active treatment and supportive care patients incurred mean ± standard deviation all-cause healthcare costs of $55,723 ± $61,994 and $68,596 ± $100,375 per-patient-per-month (PPPM), respectively. Decreasing PPPM costs were observed with increased remission duration (0 to <3 months: $71,823 ± $62,635; 3 to <6 months: $54,262 ± $44,734; 6 to <12 months: $35,287 ± $23,699; and ≥12 months: $15,615 ± $10,560). Although median follow-up varied by up to 5-fold, total costs were largely similar across duration-of-remission subgroups (0 to <3 months: $438,569 ± $332,675; 3 to <6 months: $590,411 ± $598,245; 6 to <12 months: $482,902 ± $369,115; and ≥12 months: $448,867 ± $316,133)., Conclusions: The economic burden of AML is substantial, even among untreated patients. Further, among patients with remission, longer durations in remission are associated with reduced PPPM healthcare costs, suggesting that remission-prolonging treatments could help mitigate healthcare costs.

Background: Limited English proficiency (LEP) is associated with adverse clinical outcomes. The clinical impact of LEP in hematopoietic stem cell transplant (HSCT) has not been studied. The objectives of this study were to compare HSCT outcomes and health care utilization of Hispanic pediatric patients with and without parental LEP., Methods: We conducted a retrospective review of Hispanic/Latino pediatric patients receiving HSCT at a single institution. Families were identified as LEP or English proficient (EP) based on clinicians' notes, social work documentation, or the signature of a Spanish interpreter on treatment consents., Results: A total of 83 Hispanic/Latino patients were identified with 53 (65.1%) having parental LEP. More patients in the LEP group had a documented financial burden at pretransplant psychosocial evaluation (72.2% vs. 41.4%, p = .009). LEP patients were more likely to have health insurance coverage through government-sponsored Medicaid (76.9% vs. 27.6%, p < .001). LEP patients were hospitalized on average 13 days longer than EP patients, and LEP patients were more likely to have pretransplant cytomegalovirus (CMV) reactivity (67.3%) than EP patients (p = .001). Overall survival was lower in LEP than EP, but was not statistically significant (p = .193). Multivariable Cox modeling suggested a potentially higher risk of death in LEP versus EP (hazard ratio = 1.56, 95% CI: 0.38, 6.23)., Conclusions: Parental LEP in HSCT is associated with prolonged hospitalization and pretransplant CMV reactivity. These factors are associated with posttransplant complications and death. Our results suggest parental LEP is a risk factor for poor HSCT outcomes. Further study is warranted in a larger cohort., (© 2021 Wiley Periodicals LLC.)

Purpose: Chemotherapy-induced nausea and vomiting (CINV) contributes to avoidable acute care, a metric now tracked in Medicare's oncology outcome measure. CINV is preventable, yet guidelines are often not followed. We sought to quantify acute care involving CINV and other avoidable toxicities after highly emetogenic chemotherapy (HEC) to identify excess risk and assess clinician adherence to antiemesis guidelines for HEC., Materials and Methods: We retrospectively evaluated U.S. electronic health records (2012-2018) using Medicare's OP-35 outcome measure to identify avoidable acute care involving any of 10 toxicities, including CINV, after HEC regimens relative to non-HEC. Antiemetic guideline adherence was defined as use ofneurokinin-1 (NKl) receptor antagonists Q5 (RAs) plus 5-hydroxytryptamine type 3 RA+ dexamethasone at HEC initiation., Results: Among 17,609 patients receiving HEC, acute care rates associated with HEC chemotherapy included 32% cisplatin, 31% carboplatin, and 21% anthracycline/cyclosphospharnide (AC), with 76% meeting the criteria as avoidable events. Oxaliplatin rates were 29%. Avoidable acute care occurred 1.83 times (95% confidence interval, 1.76-1.91, p < .0001) as often after HEC versus non-HEC excluding oxaliplatin; CINV-related acute care occurred 2.29 times as often. Nonadherence to antiemesis guidelines occurred in 34% and 24% of cisplatin and AC courses, respectively, because of omission of a NKl RA., Conclusions: Patients treated with HEC regimens experienced high avoidable acute care use, 1.8 times the risk seen for other chemotherapy. Nonadherence to guideline-directed antiemetic prophylaxis highlights the need to ensure adherence to antiemetic guidelines, including the use of NKl RA in HEC., Implications for Practice: After survival, perhaps the most important goal in oncology is limiting avoidable acute care, a goal now used by Medicare to impact cancer reimbursement. This study found that patients treated with highly emetogenic chemotherapy (HEC) regimens had high rates of avoidable acute care use, 1.8 times the risk seen for other chemotherapy. A substantial proportion of the avoidable acute care involved chemotherapy-induced nausea and vomiting. Results showed that incomplete adherence to national antiemetic guidelines for HEC regimens primarily driven by omission of upfront neurokinin-1 receptor antagonist use, suggesting that improved adherence can meaningfully resolve this gap in quality and cost of care., (© 2020 AlphaMed Press.)

Background: Patients with hematologic malignancies (HM) often receive aggressive care at the end of life (EOL). Early palliative care (PC) has been shown to improve EOL care outcomes, but its benefits are less established in HM than in solid tumors. Objectives: We sought to describe the use of billed PC services among Medicare beneficiaries with HM. We hypothesized that receipt of early PC services (rendered >30 days before death) may be associated with less aggressive EOL care. Design: Retrospective cohort analysis Setting/Subjects: Using the Surveillance, Epidemiology, and End Results-Medicare registry, we studied patients with leukemia, lymphoma, myeloma, myelodysplastic syndrome, or myeloproliferative neoplasm who died between 2001 and 2015. Measurements: We described trends in the use of PC services and evaluated the association between early PC services and metrics of EOL care aggressiveness. Results: Among 139,191 decedents, the proportion receiving PC services increased from 0.4% in 2001 to 13.3% in 2015. Median time from first encounter to death was 10 days and 84.3% of encounters occurred during hospitalizations. In patients who survived >30 days from diagnosis ( N  = 120,741), the use of early PC services was more frequent in acute leukemia, women, and black patients, among other characteristics. Early PC services were associated with increased hospice use and decreased health care utilization at the EOL. Conclusion: Among patients with HM, there was an upward trend in PC services, and early PC services were associated with less aggressive EOL care. Our results support the need for prospective trials of early PC in HM.

Background: There are limited data on the treatment patterns, health care resource utilization (HRU), survival outcomes, and medical costs among Medicare beneficiaries newly diagnosed with peripheral T-cell lymphoma (PTCL)., Patients and Methods: This was a retrospective analysis of data from the Medicare Fee-For-Service claims database using the 100% sample of the Medicare research identifiable files. Patients identified for analysis were aged ≥ 65 years and had received a PTCL diagnosis between January 2011 and December 2017. Outcomes included patient characteristics, HRU, direct all-cause and PTCL-specific health care costs, treatment patterns, and overall survival. Patients were followed until disenrollment, death, or end of the study period., Results: Overall, 2551 patients with PTCL were included, among whom 37% had ≥ 1 emergency department visit and 42% had ≥ 1 hospitalization during the pre-index period. During follow-up (median, 2.0 years), 70% of patients were hospitalized at least once (mean length of stay, 1.34 days); 22% advanced to hospice care. A total of 1593 patients received ≥ 1 identifiable treatment regimen post index, of whom 26% received CHOP (cyclophosphamide, doxorubicin, vincristine, prednisone) and 3% CHOEP (CHOP plus etoposide), whereas 71% received other regimens. The median overall survival among patients receiving identifiable therapy was 4.6 years. The mean adjusted per-person-per-month all-cause costs among the overall PTCL cohort during follow-up were $5930; the mean disease-related costs were $2384. Costs were driven primarily by hospitalizations (38%) and outpatient services (28%)., Conclusions: Medicare beneficiaries newly diagnosed with PTCL have high HRU and cost burden, with no evident standard of care in real-world practice., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Patients with hematologic malignancies are thought to receive more aggressive end-of-life (EOL) care and have suboptimal hospice use compared with patients with solid tumors, but descriptions of EOL outcomes from comprehensive cohorts have been lacking. We used the population-based Surveillance, Epidemiology, and End Results-Medicare dataset to describe hospice use and indicators of aggressive EOL care among Medicare beneficiaries who died of hematologic malignancies in 2008-2015. Overall, 56.5% of decedents used hospice services for median 9 days (interquartile range, 3-27), 33.0% died in an acute hospital setting, 36.8% had an intensive care unit (ICU) admission in the last 30 days of life, and 13.3% received chemotherapy within the last 14 days of life. Hospice use was associated with 96% lower probability of inpatient death (adjusted risk ratio [aRR], 0.038; 95% confidence interval [CI], 0.035-0.042), 44% lower probability of an ICU stay in the last 30 days of life (aRR, 0.56; 95% CI, 0.54-0.57), and 62% decrease in chemotherapy use in the last 14 days of life (aRR, 0.38; 95% CI, 0.35-0.41). Hospice enrollees spent on average 41% fewer days as inpatient during the last month of life (adjusted means ratio, 0.59; 95% CI, 0.57-0.60) and had 38% lower mean Medicare spending in the last month of life (adjusted means ratio, 0.62; 95% CI, 0.61-0.64). These associations were consistent across histologic subgroups. In conclusion, EOL care quality outcomes and hospice enrollment were suboptimal among older decedents with hematologic cancers, but hospice use was associated with a consistent decrease in aggressive care at EOL., (© 2020 by The American Society of Hematology.)

Background: Older adults with acute myeloid leukemia (AML) represent a vulnerable population in whom disease-based and clinical risk factors, patient goals, prognosis, and practitioner- and patient-perceived treatment risks and benefits influence treatment recommendations., Objective: These evidence-based guidelines of the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in their decisions about management of AML in older adults., Methods: ASH formed a multidisciplinary guideline panel that included specialists in myeloid leukemia, geriatric oncology, patient-reported outcomes and decision-making, frailty, epidemiology, and methodology, as well as patients. The McMaster Grading of Recommendations Assessment, Development and Evaluation (GRADE) Centre supported the guideline-development process, including performing systematic evidence reviews (up to 24 May 2019). The panel prioritized clinical questions and outcomes according to their importance to patients, as judged by the panel. The panel used the GRADE approach, including GRADE's Evidence-to-Decision frameworks, to assess evidence and make recommendations, which were subject to public comment., Results: The panel agreed on 6 critical questions in managing older adults with AML, mirroring real-time practitioner-patient conversations: the decision to pursue antileukemic treatment vs best supportive management, the intensity of therapy, the role and duration of postremission therapy, combination vs monotherapy for induction and beyond, duration of less-intensive therapy, and the role of transfusion support for patients no longer receiving antileukemic therapy., Conclusions: Treatment is recommended over best supportive management. More-intensive therapy is recommended over less-intensive therapy when deemed tolerable. However, these recommendations are guided by the principle that throughout a patient's disease course, optimal care involves ongoing discussions between clinicians and patients, continuously addressing goals of care and the relative risk-benefit balance of treatment.

Objectives: To identify factors limiting and facilitating patient-centered communication (PCC) in the United States hematology-oncology setting, with a focus on multiple myeloma (MM), given the limited attention to PCC and rapid pace of change that has taken place in this setting., Methods: A literature search was performed from 2007 to 2017 to identify published articles and congress abstracts related to clinician-patient communication and treatment decision-making in oncology. Search results were evaluated by year of publication and disease area. A thematic assessment was performed to identify factors limiting and promoting PCC for patients with MM and other hematologic malignancies., Results: Of the 6673 publications initially retrieved, 18 exclusively reported findings in patients with hematologic malignancies and were included in this review. We identified three critical, but modifiable, barriers to PCC in the hematologic malignancy setting, including insufficient information exchange, treatment goal misalignment, and discordant role preferences in treatment decision-making. Factors that enhanced interaction quality included educational programs for clinicians and patients., Conclusions: Patients with MM and other hematologic malignancies experience a distinct set of challenges that may affect PCC., Practice Implications: Clinicians have the opportunity to improve patient care by proactively addressing the identified barriers and implementing strategies demonstrated to improve PCC., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Acute myeloid leukemia (AML) is the most common form of acute leukemia among adults and accounts for the largest number of annual deaths due to leukemias in the United States. Recent advances have resulted in an expansion of treatment options for AML, especially concerning targeted therapies and low-intensity regimens. This portion of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for AML focuses on the management of AML and provides recommendations on the workup, diagnostic evaluation and treatment options for younger (age <60 years) and older (age ≥60 years) adult patients.

Background: Place of death is an essential component of high quality cancer care and comprehensive national trends and disparities in place of death are unknown., Methods: Deidentified death certificate data were obtained via the National Center for Health Statistics. All cancer deaths from 1999 through 2015 were included. Multivariate logistic regression was used to test for disparities in place of death associated with sociodemographic variables., Results: From 1999 through 2015, a total of 9,646,498 cancer deaths occurred. Hospital deaths decreased (from 36.6% to 24.6%), whereas the rate of home deaths (38.4% to 42.6%) and hospice facility deaths (0% to 14.0%) both increased (all P<.001). On multivariate logistic regression, all assessed variables were found to be associated with place of death. Specifically, younger age (age birth-14 years: odds ratio [OR], 2.39; age 25-44 years: OR, 1.62), black (OR, 1.83) or Asian (OR, 1.74) race, and Hispanic ethnicity (OR, 1.41) were associated with hospital death. Being married (OR, 2.17) or widowed (OR, 1.56) was associated with home death whereas increasing educational level (OR, 1.15-1.19) was associated with hospice death (all P<.001). Despite overall improvements, certain disparities were found to increase. For young patients, the likelihood of a hospital death increased from 2.3 times to 3.4 times that of older patients (50.9% for those aged 15-24 years vs 15.0% for those aged ≥85 years in 2015). For black patients, the likelihood of a hospital death increased from 1.29 times to 1.42 times that of white patients (32.8% for black patients vs 23.1% for white patients in 2015)., Conclusions: Hospital cancer deaths decreased by approximately one-third with commensurate increases in home and hospice facility deaths. Many sociodemographic groups experience significant disparities with regard to place of death and may benefit from targeted efforts to improve goal-concordant care., (© 2018 American Cancer Society.)

Importance: Although many patients with end-stage cancer are offered chemotherapy to improve quality of life (QOL), the association between chemotherapy and QOL amid progressive metastatic disease has not been well-studied. American Society for Clinical Oncology guidelines recommend palliative chemotherapy only for solid tumor patients with good performance status., Objective: To evaluate the association between chemotherapy use and QOL near death (QOD) as a function of patients' performance status., Design, Setting, and Participants: A multi-institutional, longitudinal cohort study of patients with end-stage cancer recruited between September 2002 and February 2008. Chemotherapy use (n = 158 [50.6%]) and Eastern Cooperative Oncology Group (ECOG) performance status were assessed at baseline (median = 3.8 months before death) and patients with progressive metastatic cancer (N = 312) following at least 1 chemotherapy regimen were followed prospectively until death at 6 outpatient oncology clinics in the United States., Main Outcomes and Measures: Patient QOD was determined using validated caregiver ratings of patients' physical and mental distress in their final week., Results: Chemotherapy use was not associated with patient survival controlling for clinical setting and patients' performance status. Among patients with good (ECOG score = 1) baseline performance status, chemotherapy use compared with nonuse was associated with worse QOD (odds ratio [OR], 0.35; 95% CI, 0.17-0.75; P = .01). Baseline chemotherapy use was not associated with QOD among patients with moderate (ECOG score = 2) baseline performance status (OR, 1.06; 95% CI, 0.51-2.21; P = .87) or poor (ECOG score = 3) baseline performance status (OR, 1.34; 95% CI, 0.46-3.89; P = .59)., Conclusions and Relevance: Although palliative chemotherapy is used to improve QOL for patients with end-stage cancer, its use did not improve QOD for patients with moderate or poor performance status and worsened QOD for patients with good performance status. The QOD in patients with end-stage cancer is not improved, and can be harmed, by chemotherapy use near death, even in patients with good performance status.

Objective: With increasing exposure, medical students may forget that technical jargon is unfamiliar to laypeople. To investigate this possibility, authors assessed student perceptions of patient understanding across different years in medical school., Methods: 533 students at 4 U.S. medical schools rated the proportion of patients likely to understand each of twenty-one different jargon terms. Students were either in the first month of their first year, the middle of their first year, or the middle of their fourth year of medical school., Results: Fourth-year students were slightly more pessimistic about patients' understanding compared to new first-year students (mean percent understanding of 55.1% vs. 58.6%, p=0.004). Students both over- and under-estimated patient understanding of specific words compared to published estimates. In a multivariate model, other factors did not explain these differences., Conclusion: Students do not generally presume that patients understand medical jargon. In many cases they actually underestimate patients' understanding, and these estimates may become more pessimistic longitudinally. Jargon use in communication with patients does not appear to stem from unrealistic presumptions about patients' understanding or from desensitization to jargon during medical school., Practice Implications: Training about patient knowledge of medical jargon may be a useful addition to communication skills curricula., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Background: A physician's obligations to deliver compassionate care do not end with a patient's death. When a patient dies there remains a responsibility to assist grieving family members. Unfortunately, many physicians feel ill prepared to assist in the bereavement process, not knowing what to say or how to say it. Although underutilized, the medical autopsy can play an important role in families' grief processes, particularly in those cases wherein uncertainties exist regarding the ultimate cause of death., Discussion: Here we postulate a role for the medical autopsy in assisting families through the grief process, which we demonstrate via an illustrative case. Effective communication of these results to family members is the key to its therapeutic effect.