Utilization of Autologous Hematopoietic Cell Transplantation Over Time in Multiple Myeloma: A Population-Based Study.

PURPOSE: Autologous hematopoietic cell transplantation (autoHCT) is associated with survival benefits in multiple myeloma (MM), but utilization remains low and differs by sociodemographic factors. Prior population-based studies have not fully captured autoHCT utilization or examined relationships between sociodemographic factors and autoHCT trends over time. PATIENTS AND METHODS: We used a novel data linkage between the California Cancer Registry, Center for International Blood and Marrow Transplant Research, and hospitalizations to capture autoHCT in a population-based MM cohort (n = 29, 109; 1991-2016). Due to interactions by treatment era, stratified multivariable Cox proportional hazards regression models determined factors associated with autoHCT. RESULTS: The frequency of MM patients who received autoHCT increased from 5.7% (1991-1995) to 27.4% (2011-2016). In models by treatment era, patients with public/no (vs. private) health insurance were less likely to receive autoHCT (2011-2016 Medicare hazard ratio (HR) 0.70, 95% confidence interval (CI): 0.63-0.78; Medicaid HR 0.81, CI: 0.72-0.91; no insurance HR 0.56, CI: 0.32-0.99). In each treatment era, Black/African American (vs. non-Hispanic White) patients were less likely to receive autoHCT (2011-2016 HR 0.83, CI: 0.72-0.95). Hispanic patients were less likely to undergo autoHCT, most prominently in the earliest treatment era (1991-1995 HR 0.58, 95% CI: 0.37-0.90; 2011-2016 HR 1.07, CI: 0.96-1.19). Patients in lower socioeconomic status neighborhoods were less likely to utilize autoHCT, but differences decreased over time. CONCLUSIONS: Despite increases in autoHCT utilization, sociodemographic disparities remain. Identifying and mitigating barriers to autoHCT is essential to ensuring more equitable access to this highly effective therapy.

Linking the Center for International Blood and Marrow Transplant Research Registry to the California Cancer Registry and California Hospital Patient Discharge Data.

Advances in hematopoietic cell transplantation (HCT) have substantially improved patient survival, increasing the importance of studying outcomes and long-term adverse effects in the rapidly growing population of HCT survivors. Large-scale registry data from the Center for International Blood and Marrow Transplant Research (CIBMTR) are a valuable resource for studying mortality and late effects after HCT, providing detailed data reported by HCT centers on transplantation-related factors and key outcomes. This study was conducted to evaluate the robustness of CIBMTR outcome data and assess health-related outcomes and healthcare utilization among HCT recipients. We linked data from the CIBMTR for California residents with data from the population-based California Cancer Registry (CCR) and hospitalization information from the California Patient Discharge Database (PDD). In this retrospective cohort study, probabilistic and deterministic record linkage used key patient identifiers, such as Social Security number, ZIP code, sex, birth date, hematologic malignancy type and diagnosis date, and HCT type and date. Among 22,733 patients registered with the CIBMTR who underwent autologous or allogeneic HCT for hematologic malignancy between 1991 and 2016, 89.0% were matched to the CCR and/or PDD (n = 17,707 [77.9%] for both, n = 1179 [5.2%] for the CCR only, and n = 1342 [5.9%] for the PDD only). Unmatched patients were slightly more likely to have undergone a first autologous HCT than an allogeneic HCT (12.6% versus 9.0%), to have a larger number of missing linkage identifiers, and to have undergone HCT prior to 2010. Among the patients reported to the CIBMTR who matched to the CCR, 85.7% demonstrated concordance of both hematologic malignancy type and diagnosis date across data sources. This linkage presents unparalleled opportunities to advance our understanding of HCT practices and patient outcomes.

Impact of COVID-19 on Hematology-Oncology Trainees: A Quantitative and Qualitative Assessment.

PURPOSE: Graduate medical and research training has drastically changed during the COVID-19 pandemic, with widespread implementation of virtual learning, redeployment from core rotations to the care of patients with COVID-19, and significant emotional and physical stressors. The specific experience of hematology-oncology (HO) fellows during the COVID-19 pandemic is not known. METHODS: We conducted a mixed-methods study using a survey of Likert-style and open-ended questions to assess the training experience and well-being of HO fellows, including both clinical and postdoctoral trainee members of the American Society of Hematology and ASCO. RESULTS: A total of 2,306 surveys were distributed by e-mail; 548 (23.8%) fellows completed the survey. Nearly 40% of fellows felt that they had not received adequate mental health support during the pandemic, and 22% reported new symptoms of burnout. Pre-existing burnout before the pandemic, COVID-19-related clinical work, and working in a primary research or nonclinical setting were associated with increased burnout on multivariable logistic regression. Qualitative thematic analysis of open-ended responses revealed significant concerns about employment after training completion, perceived variable quality of virtual education and board preparation, loss of clinical opportunities to prepare for independent clinical practice, inadequate grant funding opportunities in part because of shifting research priorities, variable productivity, and mental health or stress during the pandemic. CONCLUSION: HO fellows have been profoundly affected by the pandemic, and our data illustrate multiple avenues for fellowship programs and national organizations to support both clinical and postdoctoral trainees.

Stage at diagnosis and survival among adolescents and young adults with lymphomas following the Affordable Care Act implementation in California.

Adolescents and young adults (AYAs, 15-39 years) are the largest uninsured population in the Unites States, increasing the likelihood of late-stage cancer diagnosis and poor survival. We evaluated the associations between the Affordable Care Act (ACA), insurance coverage, stage at diagnosis and survival among AYAs with lymphoma. We used data from the California Cancer Registry linked to Medicaid enrollment files on AYAs diagnosed with a primary non-Hodgkin (NHL; n = 5959) or Hodgkin (n = 5378) lymphoma pre-ACA and in the early and full ACA eras. Health insurance was categorized as continuous Medicaid, discontinuous Medicaid, Medicaid enrollment at diagnosis/uninsurance, other public and private. We used multivariable regression models for statistical analyses. The proportion of AYAs uninsured/Medicaid enrolled at diagnosis decreased from 13.4% pre-ACA to 9.7% with full ACA implementation, while continuous Medicaid increased from 9.3% to 29.6% during this time (P < .001). After full ACA, AYAs with NHL were less likely to be diagnosed with Stage IV disease (adjusted odds ratio [aOR] = 0.84, 95% confidence interval [CI] = 0.73-0.97). AYAs with lymphoma were more likely to receive care at National Cancer Institute-Designated Cancer Centers (aOR = 1.42, 95% CI = 1.28-1.57) and had lower likelihood of death (adjusted hazard ratio = 0.54, 95% CI = 0.46-0.63) after full ACA. However, AYAs from the lowest socioeconomic neighborhoods, racial/ethnic minority groups and those with Medicaid continued to experience worse survival. In summary, AYAs with lymphomas experienced increased access to healthcare and better clinical outcomes following Medicaid expansion under the ACA. Yet, socioeconomic and racial/ethnic disparities remain, calling for additional efforts to decrease health inequities among underserved AYAs with lymphoma.

Impact of insurance type and timing of Medicaid enrollment on survival among adolescents and young adults with cancer.

BACKGROUND: Adolescents and young adults (AYAs) with public or no insurance experience later stage at diagnosis and worse overall survival compared with those with private insurance. However, prior studies have not distinguished the survival impact of continuous Medicaid coverage prior to diagnosis compared with gaining Medicaid coverage at diagnosis. METHODS: We linked a cohort of AYAs aged 15-39 who were diagnosed with 13 common cancers from 2005 to 2014 in the California Cancer Registry with California Medicaid enrollment files to ascertain Medicaid enrollment, with other insurance determined from registry data. We used Cox proportional hazards regression to evaluate the impact of insurance on survival, adjusting for clinical and demographic characteristics. RESULTS: Among 62 218 AYAs, over 65% had private/military insurance, 10% received Medicaid at diagnosis, 13.2% had continuous Medicaid, 4.1% had discontinuous Medicaid, 1.7% had other public insurance, 3% were uninsured, and 2.6% had unknown insurance. Compared with those with private/military insurance, individuals with Medicaid insurance had significantly worse survival regardless of when coverage began (received Medicaid at diagnosis: hazard ratio [95% confidence interval]: 1.51 [1.42-1.61]; continuously Medicaid insured: 1.42 [1.33-1.52]; discontinuous Medicaid: 1.64 [1.49, 1.80]). Analyses of those with Medicaid insurance only demonstrated slightly worse cancer-specific survival among those with discontinuous Medicaid or enrollment at diagnosis compared with those with continuous enrollment, but results were not significant stratified by cancer site. CONCLUSIONS AND RELEVANCE: AYAs with Medicaid insurance experience worse cancer-specific survival compared with those with private/military insurance, yet continuous enrollment demonstrates slight survival improvements, providing potential opportunities for future policy intervention.

Impact of Health Insurance on Stage at Cancer Diagnosis Among Adolescents and Young Adults.

BACKGROUND: Uninsured adolescents and young adults (AYAs) and those with publicly funded health insurance are more likely to be diagnosed with cancer at later stages. However, prior population-based studies have not distinguished between AYAs who were continuously uninsured from those who gained Medicaid coverage at the time of cancer diagnosis. METHODS: AYA patients (ages 15-39 years) with nine common cancers diagnosed from 2005 to 2014 were identified using California Cancer Registry data. This cohort was linked to California Medicaid enrollment files to determine continuous enrollment, discontinuous enrollment, or enrollment at diagnosis, with other types of insurance determined from registry data. Multivariable logistic regression was used to evaluate factors associated with later stages at diagnosis. RESULTS: The majority of 52 774 AYA cancer patients had private or military insurance (67.6%), followed by continuous Medicaid (12.4%), Medicaid at diagnosis (8.5%), discontinuous Medicaid (3.9%), other public insurance (1.6%), no insurance (2.9%), or unknown insurance (3.1%). Of the 13 069 with Medicaid insurance, 50.1% were continuously enrolled. Compared to those who were privately insured, AYAs who enrolled in Medicaid at diagnosis were 2.2-2.5 times more likely to be diagnosed with later stage disease, whereas AYAs discontinuously enrolled were 1.7-1.9 times and AYAs continuously enrolled were 1.4-1.5 times more likely to be diagnosed with later stage disease. Males, those residing in lower socioeconomic neighborhoods, and AYAs of Hispanic or black race and ethnicity (vs non-Hispanic white) were more likely to be diagnosed at a later stage, independent of insurance. CONCLUSIONS: Our findings suggest that access to continuous medical insurance is important for decreasing the likelihood of late stage cancer diagnosis.

Sociodemographic disparities in the occurrence of medical conditions among adolescent and young adult Hodgkin lymphoma survivors.

PURPOSE: Hodgkin lymphoma (HL) survivors experience high risks of second cancers and cardiovascular disease, but no studies have considered whether the occurrence of these and other medical conditions differ by sociodemographic factors in adolescent and young adult (AYA) survivors. METHODS: Data for 5,085 patients aged 15-39 when diagnosed with HL during 1996-2012 and surviving ≥ 2 years were obtained from the California Cancer Registry and linked to hospitalization data. We examined the impact of race/ethnicity, neighborhood socioeconomic status (SES), and health insurance on the occurrence of medical conditions (≥ 2 years after diagnosis) and the impact of medical conditions on survival using multivariable Cox proportional hazards regression. RESULTS: Twenty-six percent of AYAs experienced at least one medical condition and 15% had ≥ 2 medical conditions after treatment for HL. In multivariable analyses, Black HL survivors had a higher likelihood (vs. non-Hispanic Whites) of endocrine [hazard ratio (HR) = 1.37, 95% confidence interval (CI) 1.05-1.78] and circulatory system diseases (HR = 1.58, CI 1.17-2.14); Hispanics had a higher likelihood of endocrine diseases [HR = 1.24 (1.04-1.48)]. AYAs with public or no insurance (vs. private/military) had higher likelihood of circulatory system diseases, respiratory system diseases, chronic kidney disease/renal failure, liver disease, and endocrine diseases. AYAs residing in low SES neighborhoods (vs. high) had higher likelihood of respiratory system and endocrine diseases. AYAs with these medical conditions or second cancers had an over twofold increased risk of death. CONCLUSION: Strategies to improve health care utilization for surveillance and secondary prevention among AYA HL survivors at increased risk of medical conditions may improve outcomes.

The Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS): reliability and validity.

Emergency department (ED) management of adults with sickle cell disease (SCD) is complex and frustrating. The Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS) is a research-based decision support and quality improvement (QI) tool to guide management of individual patients with SCD and can also be used to guide the development of ED protocols and other QI initiatives for this population. The study evaluated ED-SCANS' inter-rater reliability, face and utility validity among clinicians, and construct validity of anxiety, depression, and psychiatric or social service needs among patients. ED nurses and physicians found the ED-SCANS to be useful, relevant, and easy to use. Nurse practitioners can use the ED-SCANS to assess and manage individual patients. Clinical nurse specialists can use the ED-SCANS as a framework to guide departmental QI efforts.

A method to identify California's sickle-cell disease population and its linkage to the California Cancer Registry.

The primary purpose of this study was to develop methods to estimate cancer risk among those with sickle-cell disease (SCD) in California. SCD is an inherited disorder of hemoglobin. Increased hematopoietic cell turnover, chronic inflammation, and reduced immune function have led to speculation that cancer risk may be higher in this group. Despite this conjecture, there is a dearth of population-based studies on cancer risk among those with SCD. In this study, we utilized California's Office of Statewide Health Planning and Development (OSHPD) hospital patient discharge (PD) and emergency department utilization (ED) data systems to identify individuals with SCD. Cases coded as ICD-9-CM 282.60, 282.61, 282.62, 282.63, 282.68, 282.69, 282.41, or 282.42 from any of the 25 diagnostic fields were captured, from 1991-2007 from the PD or 2005-2007 from the ED data systems. A case was excluded if the patient's Social Security number was deemed nonsense; SCD was coded as a comorbid condition for a single visit; or the patient's age was less than 2 years. The resulting SCD case cohort was linked to the California Cancer Registry (CCR). Disease prevalence was estimated for 2006 mathematically using a formula consisting of the cohort sum; SCD live births and deaths from 2005-2007. We identified 152,369 SCD-related admissions to California hospitals and/or emergency departments from 1991-2007. Of those, 9,066 admissions were among patients whose SSN was deemed nonsense and 3,047 among children less than 2 years old. Of the remaining patients, 1,370 had only 1 admission with a comorbid SCD diagnostic code. The final cohort consisted of 7,144 persons, which was linked to the CCR, 1988-2007. We found 203 patients with 216 tumors. We estimated the prevalence of SCD in California, for 2006, at 3,633 individuals. This is the first study to use both California OSHPD PD and ED data systems in concert for SCD case finding and to estimate SCD prevalence in California based on healthcare utilization. It is also the first time that a SCD case cohort has been linked to the CCR to ultimately determine cancer risk in this population.

Risk assessment models for cancer-associated venous thromboembolism.

Venous thromboembolism (VTE) is common in cancer patients, and is associated with significant morbidity and mortality. Several factors, including procoagulant agents secreted by tumor cells, immobilization, surgery, indwelling catheters, and systemic treatment (including chemotherapy), contribute to an increased risk of VTE in cancer patients. There is growing interest in instituting primary prophylaxis in high-risk patients to prevent incident (first-time) VTE events. The identification of patients at sufficiently high risk of VTE to warrant primary thromboprophylaxis is essential, as anticoagulation may be associated with a higher risk of bleeding. Current guidelines recommend the use of pharmacological thromboprophylaxis in postoperative and hospitalized cancer patients, as well as ambulatory cancer patients receiving thalidomide or lenalidomide in combination with high-dose dexamethasone or chemotherapy, in the absence of contraindications to anticoagulation. However, the majority of cancer patients are ambulatory, and currently primary thromboprophylaxis is not recommended for these patients, even those considered at very high risk. In this concise review, the authors discuss risk stratification models that have been specifically developed to identify cancer patients at high risk for VTE, and thus might be useful in future studies designed to determine the potential benefit of primary thromboprophylaxis.

Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS), a focus group and decision support tool development project.

OBJECTIVES: A decision support tool may guide emergency clinicians in recognizing assessment, analgesic and overall management, and health service delivery needs for patients with sickle cell disease (SCD) in the emergency department (ED). We aimed to identify data and process elements important in making decisions regarding evaluation and management of adult patients in the ED with painful episodes of SCD. METHODS: Qualitative methods using a series of focus groups and grounded theory were used. Eligible participants included adult clients with SCD and emergency physicians and nurses with a minimum of 1 year of experience providing care to patients with SCD in the ED. Patients were recruited in conjunction with annual SCD meetings, and providers included clinicians who were and were not affiliated with sickle cell centers. Groups were conducted until saturation was reached and included a total of two patient groups, three physician groups, and two nurse groups. Focus groups were held in New York, Durham, Chicago, New Orleans, and Denver. Clinician participants were asked the following three questions to guide the discussion: 1) what information would be important to know about patients with SCD in the ED setting to effectively care for them and help you identify patient analgesic, treatment, and referral needs? 2) What treatment decisions would you make with this information? and 3) What characteristics would a decision support tool need to have to make it meaningful and useful? Client participants were asked the same questions with rewording to reflect what they believed providers should know to provide the best care and what they should do with the information. All focus groups were audiotaped and transcribed. The constant comparative method was used to analyze the data. Two coders independently coded participant responses and identified focal themes based on the key questions. An investigator and assistant independently reviewed the transcripts and met until the final coding structure was determined. RESULTS: Forty-seven individuals participated (14 persons with SCD, 16 physicians, and 17 nurses) in a total of seven different groups. Two major themes emerged: acute management and health care utilization. Major subthemes included the following: physiologic findings, diagnostics, assessment and treatment of acute painful episodes, and disposition. The most common minor subthemes that emerged included past medical history, presence of a medical home (physician or clinic), individualized analgesic treatment plan for treatment of painful episodes, history of present illness, medical home follow-up available, patient-reported analgesic treatment that works, and availability of analgesic prescription at discharge. Additional important elements in treatment of acute pain episodes included the use of a standard analgesic protocol, need for fluids and nonpharmacologic interventions, and the assessment of typicality of pain presentation. The patients' interpretation of the need for hospital admission also ranked high. CONCLUSIONS: Participants identified several areas that are important in the assessment, management, and disposition decisions that may help guide best practices for SCD patients in the ED setting.

Overcoming barriers to cancer clinical trial accrual: impact of a mass media campaign.

BACKGROUND: Annually, only 3% of adult patients participate in cancer clinical trials (CCT). Accrual barriers include lack of CCT awareness and uncertain third-party coverage. In 2002, a California law (SB37) required all insurers to reimburse costs related to CCT. The objective of the current study was to increase awareness of CCT and SB37 through a mass multimedia campaign (MMC) in the University of California (UC) Davis (UCD) Cancer Center catchment area. The authors assessed willingness to participate in and accrual to CCT. METHODS: Changes in CCT/SB37 awareness and willingness to participate were investigated before the MMC versus after the MMC and in UCD respondents versus UC San Diego (UCSD) catchment respondents-a control group that was not exposed to the MMC-by Pearson chi-square and logistic regression analyses. RESULTS: Of 1081 post-MMC respondents, 957 were from UCD, and 124 from UCSD. UCD respondents had a greater awareness of CCT (59% vs 65%; P < .01) and SB37 (17% vs 32%; P < .01) compared with UCSD respondents. Willingness to participate did not change in either cohort. Awareness level predicted willingness (odds ratio, 2.3; P < .01). Blacks, Asians, and lowest income (<$25 K per year) groups were the least willing to participate (P < .01, P < .04, and P < .02, respectively). The CCT accrual rate at UCD was unchanged. CONCLUSIONS: CCT and SB37 awareness increased significantly in the UCD cohort after the MMC. However, it was unclear whether this increase was attributable entirely to the MMC or to varying demographic variables. Enhancing patient willingness and accrual will require targeting other variables, such as physician or resource barriers, rather than just CCT and reimbursement awareness.