Differences in rural versus urban cancer patients’ perception of care coordination.

114 Background: Although advances in anticancer treatment have improved survival of patients with cancer overall, cancer mortality rates remain disproportionately high in rural areas. Disparities in rural cancer health outcomes are partially attributed to challenges with care coordination in rural areas. However, little is known about rural-urban differences in patients’ perception of cancer care coordination. In this exploratory study, we compared rural and urban cancer patients’ perception of care coordination (CC) using a Care Coordination Instrument (CCI), a validated self-report measure. Methods: We conducted a secondary analysis of cross-sectional survey data from two community-based cancer care delivery studies from 2018 and 2019 focused on cancer patients’ perception of CC. Patients receiving active therapy for any cancer completed a 29-item CCI. The CCI assesses overall perceptions of CC (Total) and across 3 domains: Communication, Navigation, and Operational. The rural patient cohort was derived from the American Cancer Society Hope Lodge Hawaii, which provides lodging for patients from neighbor islands (rural) receiving cancer care on Oahu (urban). The urban comparison group included patients residing on Oahu. Multivariate regression analyses were conducted to compare rural and urban patients’ perception of CC with adjustment for age, gender, and cancer type. Results: Data from 243 patients were analyzed; 23 (9.5%) were rural and 220 (90.5%) were urban. The rural and urban groups were similar with respect to patient demographics (age, gender) and clinical status. Rural patients reported significantly lower overall mean CCI scores than urban patients (54.7 vs 61.6; p = .02). Rural-urban differences in patients’ perception of CC were found for Communication (29.5 vs 35.1; p = .004) and Operational (19.7 vs 22.0; p = .02) domains. There were no rural-urban differences for Navigation. Conclusions: Our results demonstrate that rural patients had significantly poorer perception of care coordination overall than urban patients. Specifically, the observed rural vs urban differences in patients’ perception of care coordination were related to communication and operational challenges. Required coordination with a patient navigator to facilitate access to Hope Lodge may have confounded analysis in the Navigation domain. These findings highlight the need for interventions to address communication and operational CC challenges for rural patients in order to improve the quality of cancer care and reduce health disparities for rural cancer patients.

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Perceptions of cancer care coordination in patient-family caregiver dyads.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e14036 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e14036-e14036

Author(s):

Izumi Okado ◽

Ian Pagano ◽

Tracey Hewitt ◽

Kelnia Azevedo ◽

Cherie Guillermo ◽

...

Keyword(s):

Cancer Patients ◽

Care Coordination ◽

Family Caregiver ◽

Cancer Care ◽

Care Delivery ◽

Bimodal Distribution ◽

Self Report ◽

Patient Navigator ◽

Cross Sectional ◽

Caregiver Involvement

e14036 Background: Family caregivers (FCGs) can play a key role in coordinating care for cancer patients. However, little is known about FCGs’ perspectives of care coordination (CC). In this cross-sectional study, we evaluated perceptions of CC in cancer patient-family caregiver dyads using the Care Coordination Instrument (CCI), a validated self-report measure with excellent psychometric properties. Methods: Patients receiving active treatment for cancer and their primary FCGs ( N = 54 dyads) completed the 29-item CCI (patient) and the CCICG (a parallel FCG version) at private oncology practices or hospital-based facilities from June to Sept. 2019. The CCI and CCICG assess overall perceptions of CC (Total) and across 3 domains: Communication, Navigation, and Operational. The CCICG includes a supplemental questionnaire that assesses the degree of caregiver CC involvement on a 4-point Likert scale. Mixed regression models were used to examine differences between patients and FCGs’ perceptions of CC and to identify predictors of dyadic differences on the CCI scores. Pearson’s correlation was used to evaluate associations between FCGs’ perceptions of CC and the degree of caregiver involvement. Results: CCICG Total scores demonstrated a bimodal distribution, representing FCGs’ perceptions of CC in distinct high and low subgroups; thus, all analyses were conducted by subgroups (highCG, lowCG). Overall, no dyadic differences were found in the highCG group on the CCI scores. However, in the lowCG group, FCGs reported poorer Total ( p < .01), Communication ( p < .01), Navigation ( p < .01), and Operational ( p < .05) scores than patients. Provider setting (private practices) and the absence of an identified patient navigator significantly predicted poorer FCG Total scores compared to patients’ perceptions ( p < .05). FCGs’ Total scores were inversely associated with the degree of caregiver involvement among FCGs in the lowCG group ( p < .05) but not among FCGs in the highCG group. Conclusions: Our findings demonstrate that a subgroup of FCGs has poorer perceptions of CC that differ significantly from patient perceptions and is most apparent for patients receiving treatment in a private practice setting and in the absence of a patient navigator. These FCGs report a high degree of caregiver involvement and may be providing additional CC support that is not recognized by cancer patients. These findings underscore the need for interventions to support FCG CC involvement as a member of the care team in order to improve the quality and value of patient-centered cancer care delivery.

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Validation of an oncology-specific instrument to measure cancer patients’ perception of care coordination.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.6543 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 6543-6543

Author(s):

Izumi Okado ◽

Kevin Cassel ◽

Ian Pagano ◽

Erin Fukaya ◽

Timothy Kelleher ◽

...

Keyword(s):

Cancer Patients ◽

Care Coordination ◽

Cancer Care ◽

Care Delivery ◽

Care Transitions ◽

Patient Navigator ◽

Cancer Type ◽

Practice Setting ◽

Health Providers ◽

Perceptions Of Care

6543 Background: According to the IOM, effective coordination of care (CC) is a critical component of high-quality cancer care; however, lack of a reliable and validated measure limits our current understanding of cancer care coordination. We examined psychometric properties and utility of a Care Coordination Instrument (CCI), a survey developed to assess cancer patients’ perceptions of care coordination. Methods: The 29-item CCI was administered to 200 patients receiving active treatment for cancer at private oncology practices and hospital-based facilities from Oct. 2018 to Jan. 2019. The CCI includes subscales that evaluate CC in 3 domains (Communication, Navigation, Operational) across 4 areas of CC (patient-physician; between health providers; during inpatient-to-ambulatory care transitions; during transitions across different phases of care). All items were rated on a 4-point Likert scale. Results: Psychometric analyses of the CCI demonstrated that it has good internal consistency reliability (α = .917) and the three-factor solution was an acceptable fit (CFI = .853, SRMR = .065). Overall, cancer types (leukemia, myeloma) and having an identified patient navigator significantly predicted higher patients’ ratings of CC ( p < .05). Similar trends were found for Communication and Operation subscale scores ( p < .05). Having an identified navigator predicted higher Navigation scores ( p < .05). Marginally significant differences were found for practice setting, with patients receiving care in hospital-based facilities reporting better CC ( p = .085). Item-level analyses revealed significant differences in specific aspects of CC (e.g., physician-patient communication) across cancer type, presence/absence of a patient navigator, and practice setting. Conclusions: The results demonstrate that the CCI is a reliable and valid instrument for measuring cancer patients’ perceptions of care coordination. Perception of CC correlated with the presence of a navigator, underlying cancer type and (trending) practice setting. Use of this instrument may reveal important information about cancer care coordination and may identify areas of targets for improvement in patient-centered cancer care delivery.

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Impact of rural/urban residence on relative survival (RS) in patients with kidney cancer: An analysis of 14576 patients from the Austrian National Cancer Registry (ANCR).

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.6_suppl.491 ◽

2017 ◽

Vol 35 (6_suppl) ◽

pp. 491-491 ◽

Cited By ~ 1

Author(s):

Martin Marszalek ◽

Henrike E Karim-Kos ◽

Stephan Madersbacher ◽

Monika Hackl ◽

Michael Rauchenwald

Keyword(s):

Cancer Patients ◽

Kidney Cancer ◽

Rural Areas ◽

Relative Survival ◽

Medical Diagnostics ◽

Rural Residence ◽

Rural And Urban ◽

Medical Health Care ◽

Urban Rural ◽

Rural Patients

491 Background: Access to medical diagnostics and treatment might be limited for patients living in rural areas compared to urban residents. To evaluate the potential impact of urban/rural residence, we analyzed trends in RS for patients diagnosed with kidney cancer between 1998 and 2009 in Austria. Methods: All patients with kidney cancer aged ≥18 years, diagnosed from 1998-2009 were derived from the ANCR (n=14,576). Patients were categorized into two groups: rural (n=7,537) and urban (n=7,039) based on a complex algorithm considering infrastructure, commuter interrelations, accessibility of centers, and tourism at the time of diagnosis. Relative survival was calculated based on complete follow-up until December 31st, 2014. Poisson regression modeling was used to evaluate survival differences between the two groups and to calculate the relative excess risk of dying (RER). Analyses were performed for the total patient population and primary metastatic patients (M+). Results: Distribution of sex, age, stage of disease, year of diagnosis, and surgical treatment did not differ between rural and urban patients. Five-year RS was 74% for rural compared to 73% for urban patients (RER for rural: 0.88, 95% CI 0.81-0.95). In M+ patients, 5-year RS was 14% for both residence groups. On multivariate analysis, residence remained as an independent predictor for survival in the overall kidney cancer population (RER of rural patients 0.87, 95% CI 0.81-0.94). For M+ patients the RER was 0.90 ( 95% CI 0.81-1.00). For patients without surgery, rural patients were even stronger benefited in their survival than urban patients (overall population: RER 0.81, 95% CI 0.74-0.89; M+ patients: RER 0.84, 95% CI 0.73-0.97) wherereas in surgical patients RS did not differ between rural and urban patients. Conclusions: An advantage in RS was observed for kidney cancer patients living in rural areas. This advantage was evident in metastatic and non-metastatic patients, especially in patients who did not undergo surgery for (metastatic) kidney cancer. These results suggest that access to medical health care for kidney cancer patients in Austria is not limited by rural residence.

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Assessing cancer programs' financial resources for rural cancer patients.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.27_suppl.165 ◽

2019 ◽

Vol 37 (27_suppl) ◽

pp. 165-165

Author(s):

Victoria Marie Petermann ◽

Robin C. Vanderpool ◽

Jan Marie Eberth ◽

Catherine Rohweder ◽

Randall Teal ◽

...

Keyword(s):

Cancer Patients ◽

Rural Areas ◽

Insurance Coverage ◽

Cancer Control ◽

Financial Resources ◽

Financial Toxicity ◽

Cancer Care Facilities ◽

Rural And Urban ◽

Housing Costs ◽

Rural Patients

165 Background: The National Cancer Institute (NCI) has identified rural cancer control as a research priority. Rural patients may have greater cancer-related financial burdens due to high travel costs, low insurance coverage, and less flexible work schedules. To better understand geographic differences in cancer-related financial toxicity from an organizational perspective, we interviewed staff from a range of cancer treatment settings in counties across the rural-urban continuum. The goal was to qualitatively assess the financial resources available to cancer patients, particularly those residing in rural areas. Methods: Seven research teams within the Cancer Prevention and Research Control Network interviewed personnel providing financial navigation services across four types of cancer care facilities and three urban/rural classifications. Interviews were audio-recorded and transcribed. We identified themes using inductive content analysis. A total of 28 interviews were collected across 7 states and preliminary results have been generated from 20 interviews. Results: Study participants identified transportation and housing costs as primary financial stressors for rural patients. A few personnel from centers in urban counties did not observe clear differences in experiences of financial toxicity between rural and urban patients. No personnel mentioned resources that are long-term or specifically for rural patients. Gas cards and temporary housing are often provided to help rural and urban patients access treatment. Insufficient staffing is a barrier to addressing patients’ financial concerns in rural and urban centers. Urban institutions, particularly NCI-designated facilities, employ more cancer-specific financial navigators than rural institutions. Conclusions: Patients across the rural-urban continuum experience financial hardship, but rural patients may be disproportionately affected by transportation and housing costs. Improving transportation and housing support may improve their ability to access treatment. Financial navigation practices within states vary; thus, patients and cancer centers may benefit from more streamlined approaches to address financial needs for all cancer patients.

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Impact of rural/urban residence on relative survival (RS) in patients with kidney cancer: An analysis of 14576 patients from the Austrian National Cancer Registry (ANCR).

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e16072 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e16072-e16072

Author(s):

Martin Marszalek ◽

Henrike E Karim-Kos ◽

Stephan Madersbacher ◽

Michael Rauchenwald ◽

Monika Hackl

Keyword(s):

Cancer Patients ◽

Kidney Cancer ◽

Rural Areas ◽

Relative Survival ◽

Medical Diagnostics ◽

Rural Residence ◽

Rural And Urban ◽

Medical Health Care ◽

Urban Rural ◽

Rural Patients

e16072 Background: Access to medical diagnostics and treatment might be limited for patients living in rural areas compared to urban residents. To evaluate the potential impact of urban/rural residence, we analyzed trends in RS for patients diagnosed with kidney cancer between 1998 and 2015 in Austria. Methods: All patients with kidney cancer aged ≥18 years, diagnosed between 1998 and 2015 were derived from the ANCR (N = 22,041). Patients were categorized into two groups: rural (N = 7,53) and urban (N = 10,552) based on a complex algorithm considering infrastructure, commuter interrelations, accessibility of centers and tourism at the time of diagnosis. Relative survival was calculated based on complete follow-up until December 31st, 2016. Poisson regression modeling was used to evaluate survival differences between the two groups and to calculate the relative excess risk of dying (RER). Analyses were performed for the total patient population and primary metastatic patients (M+, N = 2,490). Results: Distribution of age and surgical treatment did not differ between rural and urban patients. Five-year RS was 75% for rural patients compared to 73% for urban patients (RER for rural: 0.85, 95%CI 0.80-0.91). In M+ patients, 5-year RS was 14% for urban patients and 15% for rural patients (p = .02) Multivariate analysis showed that residence remained as an independent predictor for survival in the overall kidney cancer population (RER of rural patients 0.84, 95%CI 0.78-0.89). For M+ patients the RER of rural patients was 0.86 ( 95%CI 0.79-0.94) compared to urban M+ patients. For patients without surgery, rural patients were even stronger benefited in their survival than urban patients (overall population: RER 0.77, 95% CI 0.71-0.83; M+ patients: RER 0.81, 95%CI 0.72-0.91) wherereas in surgical patients RS did not differ between rural and urban patients. Conclusions: An advantage in RS was observed for kidney cancer patients living in rural areas. This advantage was evident in metastatic and non-metastatic patients, especially in patients who did not undergo surgery for (metastatic) kidney cancer. These results suggest that access to medical health care for kidney cancer patients in Austria is not limited by rural residence.

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Rural challenges in a decade of crowdfunding for cancer care.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e14013 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e14013-e14013

Author(s):

Ahmed Khalil ◽

Sheetal L. Higbee ◽

Khalid Khasawinah

Keyword(s):

Social Network ◽

Rural Areas ◽

Cancer Care ◽

Urban Areas ◽

Metastatic Cancer ◽

Cancer Type ◽

Treatment Type ◽

Significant Difference ◽

The Us ◽

Rural Patients

e14013 Background: Improving access and affordability to oncology care for patients in rural America is a national imperative given growing health disparities in cancer morbidity and mortality. Crowdfunding has emerged as a rescue tool for cancer patients facing difficulties paying for treatment costs. While such platforms present opportunities to increase access, patients who live in rural areas face increased challenges compared to those in urban areas. Methods: We crawled the pages of GoFundMe fundraising campaigns from 2010 – 2020 using a custom Python script. We then indexed these pages for campaigns focused on cancer treatment in the US and identified variables of interest using text analysis, including cancer type, demographics, clinical characteristics, and social network features, resulting in 151,051 campaigns. Rural status was identified by analyzing zip codes against the database provided by the US Census. Descriptive statistics, χ2, and t-tests were used to compare variables by rural status using R 3.6.3 software. Results: The 10 most prevalent types of cancer in our data were metastatic (26.8%), breast (17.0%), lung (12.4%), colorectal (6.6%), brain (6.3%), liver (4.2%), leukemia (3.2%), stomach (2.7%), pancreas (2.6%), and bone (2.1%). We found a statically significant difference between urban and rural areas in key variables including unemployment rate, insurance status, metastatic cancer rate, treatment type, social network reach, and fundraising totals. Conclusions: Since the 2011 launch of (ASCO) task force for improving cancer care of rural patients, a tremendous effort has been directed towards that. In our study of 151,051 patients over a 10-year period, we found that disparities between rural and urban America in cancer are not just limited to clinical management, but also in an era of crowdfunding, rural patients are still struggling to get the attention they need. We must increase efforts to raise awareness and find solutions to improve access to cancer care. [Table: see text]

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Urban–rural disparity in cancer incidence in China, 2008–2012: a cross-sectional analysis of data from 36 cancer registers

BMJ Open ◽

10.1136/bmjopen-2020-042762 ◽

2021 ◽

Vol 11 (4) ◽

pp. e042762

Author(s):

Shuai Yuan ◽

Shao-Hua Xie

Keyword(s):

Cancer Incidence ◽

Rural Areas ◽

Urban Areas ◽

Incidence Rates ◽

Cancer Type ◽

Anatomic Site ◽

Cross Sectional ◽

Rural And Urban Areas ◽

Rural And Urban ◽

Urban Rural

ObjectiveThe substantial differences in socioeconomic and lifestyle exposures between urban and rural areas in China may lead to urban–rural disparity in cancer risk. This study aimed to assess the urban–rural disparity in cancer incidence in China.MethodsUsing data from 36 regional cancer registries in China in 2008–2012, we compared the age-standardised incidence rates of cancer by sex and anatomic site between rural and urban areas. We calculated the rate difference and rate ratio comparing rates in rural versus urban areas by sex and cancer type.ResultsThe incidence rate of all cancers in women was slightly lower in rural areas than in urban areas, but the total cancer rate in men was higher in rural areas than in urban areas. The incidence rates in women were higher in rural areas than in urban areas for cancers of the oesophagus, stomach, and liver and biliary passages, but lower for cancers of thyroid and breast. Men residing in rural areas had higher incidence rates for cancers of the oesophagus, stomach, and liver and biliary passages, but lower rates for prostate cancer, lip, oral cavity and pharynx cancer, and colorectal cancer.ConclusionsOur findings suggest substantial urban–rural disparity in cancer incidence in China, which varies across cancer types and the sexes. Cancer prevention strategies should be tailored for common cancers in rural and urban areas.

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Abstract 2552: Adapting a novel cancer care delivery model: identifying barriers unique to care coordination for LGBTQ cancer survivors

10.1158/1538-7445.am2021-2552 ◽

2021 ◽

Author(s):

Nicolas Francone ◽

Jonathan Alhalel ◽

Will Dunne ◽

Sankirtana Danner ◽

Nihmotallahi Adebayo ◽

...

Keyword(s):

Cancer Survivors ◽

Care Coordination ◽

Cancer Care ◽

Care Delivery ◽

Delivery Model ◽

Care Delivery Model

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Assessing Patients’ Perceptions of Cancer Care Coordination in a Community-Based Setting

JCO Oncology Practice ◽

10.1200/jop.19.00509 ◽

2020 ◽

Vol 16 (8) ◽

pp. e726-e733

Author(s):

Izumi Okado ◽

Kevin Cassel ◽

Ian Pagano ◽

Randall F. Holcombe

Keyword(s):

Care Coordination ◽

Family Caregiver ◽

Cancer Care ◽

Care Delivery ◽

Disease Stage ◽

Patient Navigator ◽

Patient Questionnaire ◽

Cancer Disease ◽

Caregiver Support

PURPOSE: Effective care coordination (CC) is a hallmark of a high-quality cancer care. However, efforts to improve cancer care delivery are limited by the lack of a clinically useful tool to assess CC. In this study, we examined patients’ perceptions of cancer CC using a novel tool, the Care Coordination Instrument (CCI), and evaluated the quality of the CCI. METHODS: The CCI is a 29-item patient questionnaire that assesses CC across varied practice settings and patient populations overall and for three critical domains of CC: communication, navigation, and operational. We conducted univariable and multivariable regression analyses to identify patient clinical and practice characteristics associated with optimal versus suboptimal CC. RESULTS: Two hundred patients with cancer completed the CCI questionnaire between October 2018 and January 2019, of whom 189 were used for the analysis. The presence of a family caregiver and a diagnosis of a blood cancer were correlated with overall positive reports of CC ( P < .001 and P < .05, respectively). Poorer perceptions of CC were associated with having a head and neck cancer and the absence of family caregiver support. The effects of cancer disease stage and having access to a patient navigator on CC were not statistically significant. CONCLUSION: Integrating a patient-centered tool to assess cancer CC can be a strategy to optimize cancer care delivery. Understanding factors associated with effective and ineffective CC can help inform efforts to improve overall quality of care and care delivery.

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