Financial hardship and neighborhood socioeconomic disadvantage in long-term childhood cancer survivors.

BACKGROUND: Long-term survivors of childhood cancer face elevated risk for financial hardship. We evaluate whether childhood cancer survivors live in areas of greater deprivation and the association with self-reported financial hardships. METHODS: We performed a cross-sectional analysis of data from the Childhood Cancer Survivor Study between 1970 and 1999 and self-reported financial information from 2017 to 2019. We measured neighborhood deprivation with the Area Deprivation Index (ADI) based on current zip code. Financial hardship was measured with validated surveys that captured behavioral, material and financial sacrifice, and psychological hardship. Bivariate analyses described neighborhood differences between survivors and siblings. Generalized linear models estimated effect sizes between ADI and financial hardship adjusting for clinical factors and personal socioeconomic status. RESULTS: Analysis was restricted to 3475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 years (interquartile range [IQR] = 33-46 years and 47 years (IQR = 39-59 years), respectively. Survivors resided in areas with greater deprivation (ADI ≥ 50: 38.7% survivors vs 31.8% siblings; P < .001). One quintile increases in deprivation were associated with small increases in behavioral (second quintile, P = .017) and psychological financial hardship (second quintile, P = .009; third quintile, P = .014). Lower psychological financial hardship was associated with individual factors including greater household income (≥$60 000 income, P < .001) and being single (P = .048). CONCLUSIONS: Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Neighborhood-level disadvantage and personal socioeconomic circumstances should be evaluated when trying to assist childhood cancer survivors with financial hardships.

Understanding quality and equity: patient experiences with care in older adults diagnosed with hematologic malignancies.

BACKGROUND: Oncology settings increasingly use patient experience data to evaluate clinical performance. Given that older patients with hematologic malignancies are a high-risk population, this study examined factors associated with patient-reported health care experiences during the first year of their cancer diagnosis. METHODS: Cross-sectional study using the 2000-2015 SEER-CAHPS® data to examine patient experiences of Medicare enrollees with a primary diagnosis of leukemia or lymphoma. The primary outcomes were three CAHPS assessments: overall care, personal doctor, and health plan overall. We estimated case-mix adjusted and fully adjusted associations between factors (i.e., clinical and sociodemographic) and the CAHPS outcomes using bivariate statistical tests and multiple linear regression. RESULTS: The final sample included 1,151 patients, with 431 diagnosed with leukemia and 720 diagnosed with lymphoma (median time from diagnosis to survey 6 months). Patients who completed the survey further apart from the diagnosis date reported significantly higher adjusted ratings of care overall (ß .39, p = .008) than those closer to diagnosis. American Indian/Alaska Native, Asian, and Pacific Islander patients had lower adjusted ratings of care overall (ß - .73, p = .003) than Non-Hispanic white patients. Multimorbidity was significantly associated with higher adjusted personal doctor ratings (ß .26, p = .003). CONCLUSIONS: Unfavorable patient experiences among older adults diagnosed with hematologic malignancies warrant targeted efforts to measure and improve care quality. Future measurement of experiences of cancer care soon after diagnosis, coupled with careful sampling of high-priority populations, will inform oncology leaders and clinicians on strategies to improve care for high-risk, high-cost populations.

Health care experiences for older adults diagnosed with leukemia and lymphoma: Factors associated with emergency department use, timeliness and access of health care.

OBJECTIVES: This study examined the association of ED use in the first year of diagnosis and patient experiences in care among older adults with hematologic malignancies. MATERIALS AND METHODS: Cross-sectional design using SEER-CAHPS® data from 2002 to 2015 to study Medicare fee-for-service enrollees with a primary diagnosis of leukemia or lymphoma. We linked the CAHPS survey data (patient-reported experiences with health services) to patients' cancer registry information and Medicare outpatient claims from the SEER-CAHPS resource. We estimated associations of ED use and clinical characteristics with two CAHPS outcomes - "getting care quickly" (timeliness) and "getting needed care" (access) - with bivariate and multivariate analyses. RESULTS: The analytic sample included 751 patients, 125 of whom had an ED claim in the first year of cancer diagnosis. The most frequent ED diagnosis clusters were fever and infection (n = 17, 13.6%), orthopedic and injury (16, 12.8%) and pain (16, 12.8%). Significantly more enrollees with an ED claim were diagnosed with lymphoma (p < 0.01), lived in rural areas (p < 0.01), and lived in areas with many families living in poverty (p < 0.01). In adjusted models, enrollees with an ED claim reported significantly worse access to care (ß - 4.83; 95%CI -9.29,-0.38; p = 0.03). CONCLUSION: The management of urgent care concerns for adults with hematologic malignancies remains an important clinical and quality improvement imperative. Further study is warranted to enhance the management of emergent complications in older adults receiving care for hematologic malignancies, with efforts that enhance coordination of ambulatory oncology care.

340B Drug Pricing Program: The Expansion and Its Effect on Cancer Care.

The 340B Drug Pricing Program is a complex federal program that is intended to provide financial relief to hospitals that provide care to greater volumes of low-income, uninsured, and underinsured patients. The body of literature is growing on how cancer care has transformed since freestanding cancer hospitals became eligible for the 340B program. Currently, community oncology practices are not eligible for the 340B program.

Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.

PURPOSE: We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on ClinicalTrials.gov (NCT03161665; NCT02409121). METHODS: BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models. RESULTS: BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04). CONCLUSIONS: BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.