Impact of the COVID-19 pandemic on cancer patients in western Pennsylvania: rural-urban disparities.

PURPOSE: Disparities in cancer care persist between patients living in rural versus urban areas. The COVID-19 pandemic may have impacted concerns related to care and personal health differently in rural cancer patients. Using survey data collected from cancer patients in western Pennsylvania, we examined pandemic-related distress, concerns related to cancer care, impact on personal health, and the extent to which these differed by urban-rural residence. METHODS: Patients filled out an initial survey in August-December 2020; a second survey was completed in March 2021. The following patient concerns related to the pandemic were evaluated: threat of COVID-19 to their health, pandemic-related distress, perceptions of cancer care, and vaccine hesitancy. Multivariable logistic regression models were used to examine relationships between these outcomes and urban-rural residence as well as patient-related factors, including anxiety symptoms and social support. RESULTS: The study sample included 1,980 patients, 17% resided in rural areas. COVID-19 represented a major or catastrophic threat to personal health for 39.7% of rural and 49.0% of urban patients (p = 0.0017). Patients with high general anxiety were 10-times more likely to experience pandemic-related distress (p < 0.001). In the follow-up survey (n = 983), vaccine hesitancy was twice as prevalent among rural patients compared to urban (p = 0.012). CONCLUSIONS: The extent to which perceptions of the threat of COVD-19 to personal health and vaccine hesitancy exacerbates rural-urban disparities in cancer care and prognosis warrants further study. Cancer patients may be vulnerable to heightened anxiety and distress triggered by the pandemic.

Re-scaling and small area estimation of behavioral risk survey guided by social vulnerability data.

BACKGROUND: Local governments and other public health entities often need population health measures at the county or subcounty level for activities such as resource allocation and targeting public health interventions, among others. Information collected via national surveys alone cannot fill these needs. We propose a novel, two-step method for rescaling health survey data and creating small area estimates (SAEs) of smoking rates using a Behavioral Risk Factor Surveillance System survey administered in 2015 to participants living in Allegheny County, Pennsylvania, USA. METHODS: The first step consisted of a spatial microsimulation to rescale location of survey respondents from zip codes to tracts based on census population distributions by age, sex, race, and education. The rescaling allowed us, in the second step, to utilize available census tract-specific ancillary data on social vulnerability for small area estimation of local health risk using an area-level version of a logistic linear mixed model. To demonstrate this new two-step algorithm, we estimated the ever-smoking rate for the census tracts of Allegheny County. RESULTS: The ever-smoking rate was above 70% for two census tracts to the southeast of the city of Pittsburgh. Several tracts in the southern and eastern sections of Pittsburgh also had relatively high (> 65%) ever-smoking rates. CONCLUSIONS: These SAEs may be used in local public health efforts to target interventions and educational resources aimed at reducing cigarette smoking. Further, our new two-step methodology may be extended to small area estimation for other locations and health outcomes.

Examining ACCURE's Nurse Navigation Through an Antiracist Lens: Transparency and Accountability in Cancer Care.

There are persistent disparities in the delivery of cancer treatment, with Black patients receiving fewer of the recommended cancer treatment cycles than their White counterparts on average. To enhance racial equity in cancer care, innovative methods that apply antiracist principles to health promotion interventions are needed. The parent study for the current analysis, the Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) intervention, was a system-change intervention that successfully eliminated the Black-White disparity in cancer treatment completion among patients with early-stage breast and lung cancer. The intervention included specially trained nurse navigators who leveraged real-time data to follow-up with patients during their treatment journeys. Community and academic research partners conducted thematic analysis on all clinical notes (n = 3,251) written by ACCURE navigators after each contact with patients in the specialized navigation arm (n = 162). Analysis was informed by transparency and accountability, principles adapted from the antiracist resource Undoing Racism and determined as barriers to treatment completion through prior research that informed ACCURE. We identified six themes in the navigator notes that demonstrated enhanced accountability of the care system to patient needs. Underlying these themes was a process of enhanced data transparency that allowed navigators to provide tailored patient support. Themes include (1) patient-centered advocacy, (2) addressing system barriers to care, (3) connection to resources, (4) re-engaging patients after lapsed treatment, (5) addressing symptoms and side effects, and (6) emotional support. Future interventions should incorporate transparency and accountability mechanisms and examine the impact on racial equity in cancer care.

'It's like you don't have a roadmap really': using an antiracism framework to analyze patients' encounters in the cancer system.

Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions.Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences.Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.

The role of patient-physician relationship on health-related quality of life and pain in cancer patients.

PURPOSE: Health-related quality of life (HRQOL) and pain are important supportive cancer care outcomes. The patient-provider relationship, a modifiable care experience, has been linked to healthcare outcomes; however, less is known about associations between patient-provider relationship and supportive care outcomes in cancer patients. We examined the role of multiple aspects of the patient-provider relationship in explaining patterns of HRQOL and pain among breast and lung cancer patients. METHODS: Our analysis included 283 breast and lung cancer patients from two cancer centers. Clinical data and survey data on patient sociodemographic factors, physical and mental HRQOL, pain, and patient-physician relationship (i.e., doctor's respectfulness, time spent with doctors, patient involvement in decision-making, satisfaction with care, and following doctor's advice/treatment plan) were collected at baseline and during treatment. We estimated adjusted modified Poisson regression models to assess associations between patient-physician relationship factors and physical and mental HRQOL and pain. RESULTS: Compared with patients reporting suboptimal respect from doctors, patients reporting optimal respect were less likely to report below average physical HRQOL (adjusted risk ratio (ARR), 0.73; 95%CI, 0.62-0.86), below average mental HRQOL (ARR, 0.71; 95%CI, 0.54-0.93), and moderate-to-severe pain (ARR, 0.53; 95%CI, 0.35-0.79). Patients reporting optimal involvement in care decision-making and patients who reported following their doctor's advice/treatment plan were less likely to report below average mental HRQOL than their respective counterparts (ARR, 0.64; 95%CI, 0.50-0.83; ARR, 0.65; 95%CI, 0.48-0.86). CONCLUSION: Multiple patient-physician relationship factors account for variations in HRQOL and pain in cancer patients. These findings provide insight into potential targets for improving the patient-provider relationship and supportive cancer care outcomes.

Examining Rural-Urban Differences in Fatalism and Information Overload: Data from 12 NCI-Designated Cancer Centers.

BACKGROUND: Rural populations experience a disproportionate cancer burden relative to urban populations. One possibility is that rural populations are more likely to hold counterproductive cancer beliefs such as fatalism and information overload that undermine prevention and screening behaviors. METHODS: Between 2016 and 2020, 12 U.S. cancer centers surveyed adults in their service areas using online and in-person survey instruments. Participants (N = 10,362) were designated as rural (n = 3,821) or urban (n = 6,541). All participants were 18 and older (M = 56.97, SD = 16.55), predominately non-Hispanic White (81%), and female (57%). Participants completed three items measuring cancer fatalism ("It seems like everything causes cancer," "There's not much you can do to lower your chances of getting cancer," and "When I think about cancer, I automatically think about death") and one item measuring cancer information overload ("There are so many different recommendations about preventing cancer, it's hard to know which ones to follow"). RESULTS: Compared with urban residents, rural residents were more likely to believe that (i) everything causes cancer (OR = 1.29; 95% CI, 1.17-1.43); (ii) prevention is not possible (OR = 1.34; 95% CI, 1.19-1.51); and (iii) there are too many different recommendations about cancer prevention (OR = 1.26; 95% CI, 1.13-1.41), and cancer is always fatal (OR = 1.21; 95% CI, 1.11-1.33). CONCLUSIONS: Compared with their urban counterparts, rural populations exhibited higher levels of cancer fatalism and cancer information overload. IMPACT: Future interventions targeting rural populations should account for higher levels of fatalism and information overload.

A Multi-faceted Intervention Aimed at Black-White Disparities in the Treatment of Early Stage Cancers: The ACCURE Pragmatic Quality Improvement trial.

BACKGROUND: Reports continue to show that Blacks with curable lung or breast cancer complete treatment less often than similar Whites contributing to worse survival. ACCURE is an intervention trial designed to address this problem. PATIENTS AND METHODS: A pragmatic, quality improvement trial comparing an intervention group to retrospective and concurrent controls. Patients with early stage breast or lung cancer aged 18 to 85 were enrolled (N = 302) at 2 cancer centers between April 2013 and March 2015 for the intervention component. Data from patients seen between January 2007 and December 2012 with these diagnoses were obtained to establish control completion rates. Concurrent data for non-study patients were used to identify secular trends. The intervention included: a real time registry derived from electronic health records of participants to signal missed appointments or unmet care milestones, a navigator, and clinical feedback. The primary outcome was "Treatment Complete", a composite variable representing completion of surgery, recommended radiation and chemotherapy for each patient. RESULTS: The mean age in the intervention group was 63.1 years; 37.1% of patients were Black. Treatment completion in retrospective and concurrent controls showed significant Black-White differences (Blacks (B) 79.8% vs. Whites (W) 87.3%, p < 0.001; 83.1% B vs. 90.1% W, p < 0.001, respectively). The disparity lessened within the intervention (B 88.4% and W 89.5%, p = 0.77). Multivariate analyses confirmed disparities reduction. OR for Black-White disparity within the intervention was 0.98 (95% CI 0.46-2.1); Black completion in the intervention compared favorably to Whites in retrospective (OR 1.6; 95% CI 0.90-2.9) and concurrent (OR 1.1; 95% CI 0.59-2.0) controls. CONCLUSION: A real time registry combined with feedback and navigation improved completion of treatment for all breast and lung cancer patients and narrowed disparities. Similar multi-faceted interventions could mitigate disparities in the treatment of other cancers and chronic conditions.

A system-based intervention to reduce Black-White disparities in the treatment of early stage lung cancer: A pragmatic trial at five cancer centers.

BACKGROUND: Advances in early diagnosis and curative treatment have reduced high mortality rates associated with non-small cell lung cancer. However, racial disparity in survival persists partly because Black patients receive less curative treatment than White patients. METHODS: We performed a 5-year pragmatic, trial at five cancer centers using a system-based intervention. Patients diagnosed with early stage lung cancer, aged 18-85 were eligible. Intervention components included: (1) a real-time warning system derived from electronic health records, (2) race-specific feedback to clinical teams on treatment completion rates, and (3) a nurse navigator. Consented patients were compared to retrospective and concurrent controls. The primary outcome was receipt of curative treatment. RESULTS: There were 2841 early stage lung cancer patients (16% Black) in the retrospective group and 360 (32% Black) in the intervention group. For the retrospective baseline, crude treatment rates were 78% for White patients vs 69% for Black patients (P < 0.001); difference by race was confirmed by a model adjusted for age, treatment site, cancer stage, gender, comorbid illness, and income-odds ratio (OR) 0.66 for Black patients (95% CI 0.51-0.85, P = 0.001). Within the intervention cohort, the crude rate was 96.5% for Black vs 95% for White patients (P = 0.56). Odds ratio for the adjusted analysis was 2.1 (95% CI 0.41-10.4, P = 0.39) for Black vs White patients. Between group analyses confirmed treatment parity for the intervention. CONCLUSION: A system-based intervention tested in five cancer centers reduced racial gaps and improved care for all.

Cancer-Related Beliefs and Perceptions in Appalachia: Findings from 3 States.

BACKGROUND: Appalachians experience increased rates of cancer incidence and mortality compared to non-Appalachians. Many factors may contribute to the elevated cancer burden, including lack of knowledge and negative beliefs about the disease. METHODS: Three National Cancer Institute (NCI)-designated cancer centers with Appalachian counties in their respective population-based geographic service areas-Kentucky, Ohio, and Pennsylvania-surveyed their communities to better understand their health profiles, including 5 items assessing cancer beliefs. Weighted univariate and bivariate statistics were calculated for each of the 3 state's Appalachian population and for a combined Appalachian sample. Weighted multiple linear regression was used to identify factors associated with a cancer beliefs composite score. Data from the combined Appalachian sample were compared to NCI's Health Information National Trends Survey (HINTS). RESULTS: Data from 1,891 Appalachian respondents were included in the analysis (Kentucky = 798, Ohio = 112, Pennsylvania = 981). Significant differences were observed across the 3 Appalachian populations related to income, education, marital status, rurality, perceptions of present income, and body mass index (BMI). Four of 5 cancer beliefs were significantly different across the 3 states. Education, BMI, perceptions of financial security, and Kentucky residence were significantly associated with a lower composite score of cancer beliefs. When comparing the combined Appalachian population to HINTS, 3 of 5 cancer belief measures were significantly different. CONCLUSIONS: Variations in cancer beliefs were observed across the 3 states' Appalachian populations. Interventions should be tailored to specific communities to improve cancer knowledge and beliefs and, ultimately, prevention and screening behaviors.

Novel method for benchmarking recruitment of African American cancer patients to clinical therapeutic trials.

PURPOSE: The National Cancer Institute (NCI) has historically evaluated the participation of underserved minorities within University of Pittsburgh Cancer Institute (UPCI) clinical trials in relation to the proportion of African Americans in the general population of the UPCI primary service area of Allegheny County (12%). This standard seemed to be unrealistically high as a result of a younger age distribution of African Americans within the county. METHODS: The proportions of African Americans within the following four separate county populations were compared using data from 2000 to 2004: general population; invasive cancer patients; invasive cancer patients diagnosed or treated at UPCI-affiliated facilities; and patients enrolled onto UPCI's clinical therapeutic trials. RESULTS: Although the proportion of African Americans within the general population was approximately 13%, only 9.8% of patients diagnosed with invasive cancers were African American. Approximately 9.5% of all cancer patients diagnosed or treated at UPCI facilities were African American, which is comparable to the county-wide percentage of African American cancer patients. Recruitment rate of African Americans to oncology clinical trials from within the UPCI patient population was 7.6%. The NCI benchmark did not reflect the actual invasive cancer incidence rate in African American patients. By comparing the percentage of African Americans contributing to cancer incidence with the percentage of African American cancer patients treated at research-affiliated institutions, a more appropriate benchmark was derived. CONCLUSION: The method developed by UPCI is recommended as a useful mechanism for benchmarking recruitment of African American cancer patients to clinical therapeutic trials at other cancer centers.