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

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14036-e14036
Author(s):  
Izumi Okado ◽  
Ian Pagano ◽  
Tracey Hewitt ◽  
Kelnia Azevedo ◽  
Cherie Guillermo ◽  
...  

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.

2020 ◽  
Vol 16 (8) ◽  
pp. e726-e733
Author(s):  
Izumi Okado ◽  
Kevin Cassel ◽  
Ian Pagano ◽  
Randall F. Holcombe

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.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6543-6543
Author(s):  
Izumi Okado ◽  
Kevin Cassel ◽  
Ian Pagano ◽  
Erin Fukaya ◽  
Timothy Kelleher ◽  
...  

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.


2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 114-114
Author(s):  
Izumi Okado ◽  
Michelle Hashimoto ◽  
Randall F. Holcombe

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.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 280-280
Author(s):  
Izumi Okado ◽  
Kevin Cassel ◽  
Ian Pagano ◽  
Randall F. Holcombe

280 Background: Effective care coordination (CC) is a critical component of high-quality cancer care; however, efforts to improve cancer care coordination are hampered by limited patient-centered measures. This mixed-methods research reports on patients’ feedback and the utility of a novel care coordination instrument (CCI) designed to assess cancer care coordination. Methods: 7 focus group discussions were conducted with 68 cancer patients receiving active therapy to evaluate validity of the CCI. Subsequently, the CCI was modified and administered to additional 200 cancer patients derived from community-based private and hospital clinics. The CCI is a 29-item, multiple-choice questionnaire and includes subscales that evaluate CC in 3 domains (Communication, Navigation, Operational) across 4 areas of CC (patient-physician; between providers; during inpatient-to-ambulatory care transitions; during transitions across phases of care). Results: Qualitative analysis of focus group discussions demonstrated that the CCI has good face and content validity. Content analysis identified the following themes: Survey, Education/Knowledge, Navigator, Communication, Support, Access, Providers, and Team. Questions with unclear wording or high proportions of not applicable or missing responses were refined or removed. Results of the revised survey indicated that the CCI is able to distinguish patient- and practice characteristics associated with optimal/poor CC. Specifically, cancer types (leukemia, myeloma) and having a patient navigator predicted high overall patients’ ratings of CC ( p < .05). Marginally significant differences were found for practice setting ( p = .085). A multiple regression model with all predictors entered simultaneously revealed that the presence of a family/friend caregiver significantly predicted better CC ( p < .001); however, the benefits of a patient navigator were no longer significant. Conclusions: This study demonstrates the utility of the CCI for assessing patients’ perspectives of cancer CC. Use and integration of this instrument in oncology practices/clinics can identify areas of potential interventions for CC improvement and lead to a better quality of care.


2021 ◽  
Author(s):  
Nicolas Francone ◽  
Jonathan Alhalel ◽  
Will Dunne ◽  
Sankirtana Danner ◽  
Nihmotallahi Adebayo ◽  
...  

2019 ◽  
Vol 20 (2) ◽  
Author(s):  
Julia Trosman ◽  
Christine Weldon ◽  
Sheetal Kircher ◽  
William Gradishar ◽  
Al Benson

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6522-6522
Author(s):  
Manali I. Patel ◽  
David Ramirez ◽  
Richy Agajanian ◽  
Hilda H. Agajanian ◽  
Jay Bhattacharya ◽  
...  

6522 Background: To curb rising expenditures and improve patient-reported outcomes (PROs), we designed an intervention with patient, caregiver, provider, and payer input. The intervention is based on prior work using a lay health worker (LHW) to assess advanced cancer patients' symptoms. In this study, we trained the LHW to refer patients to palliative care and/or behavioral health services in response to positive assessments and expanded the intervention to all cancer stages. We implemented the intervention with a health plan and a community oncology group serving elderly racially/ethnically diverse patients to test the effect on symptoms, healthcare use, and total costs. Methods: We enrolled all newly diagnosed health plan beneficiaries with solid and hematologic malignancies from 10/2016 to 11/2017 and compared outcomes to all cancer patients diagnosed in the year prior to the intervention (control arm). Our primary outcome was change in patient-reported symptoms using the Edmonton Symptom Assessment Scale and Personal Health Questionnaire-9 at baseline, 6 and 12 months post-enrollment. Secondarily, we compared 12 month healthcare use and costs. All generalized linear regression models were adjusted for age, stage, comorbidities, diagnosis, and follow-up. Results: 425 patients were in the intervention; 407 in the control. In both groups, mean age was 79 years; 48% were non-Hispanic White, 43% Hispanic, 3% Black, 6% Asian/Pacific Islander; 60% had advanced stages; 28% had breast, 28% had gastrointestinal, and 10% had thoracic cancers. Intervention patients had significantly decreased symptom burden over time as compared with the control (Mean Difference: intervention (-0.77 +/- 0.28 p = 0.01) vs. control: (0.45 +/- 0.25 p = 0.06)); difference in difference: (-0.68 +/- 0.25 p = 0.007)). Depression scores also significantly decreased over time among intervention patients as compared with the control (Mean Difference: intervention (-1.10 +/- 0.38 p = 0.04)) vs control: (1.21 +/- 0.34 p = 0.01); (difference in difference: -2.03 +/- 0.3 p < 0.001)). As compared to the control arm, intervention patients had lower inpatient admissions (0.7 vs. 0.5 p = 0.01) and emergency department visits per thousand patients per year (0.6 vs. 0.42 p = 0.02), and lower median total healthcare costs ($32,270 versus $25,512 p = 0.01). Conclusions: An LHW intervention significantly improved patient-reported outcomes and the value of cancer care delivery and may be a solution to improve burdensome and costly care for patients.


PLoS ONE ◽  
2021 ◽  
Vol 16 (9) ◽  
pp. e0257420
Author(s):  
Rhiannon Edge ◽  
Josh Meyers ◽  
Gabriella Tiernan ◽  
Zhicheng Li ◽  
Alexandra Schiavuzzi ◽  
...  

The COVID-19 pandemic has dramatically impacted cancer care worldwide. Disruptions have been seen across all facets of care. While the long-term impact of COVID-19 remains unclear, the immediate impacts on patients, their carers and the healthcare workforce are increasingly evident. This study describes disruptions and reorganisation of cancer services in Australia since the onset of COVID-19, from the perspectives of people affected by cancer and healthcare workers. Two separate online cross-sectional surveys were completed by: a) cancer patients, survivors, carers, family members or friends (n = 852) and b) healthcare workers (n = 150). Descriptive analyses of quantitative survey data were conducted, followed by inductive thematic content analyses of qualitative survey responses relating to cancer care disruption and perceptions of telehealth. Overall, 42% of cancer patients and survivors reported experiencing some level of care disruption. A further 43% of healthcare workers reported atypical delays in delivering cancer care, and 50% agreed that patient access to research and clinical trials had been reduced. Almost three quarters (73%) of patients and carers reported using telehealth following the onset of COVID-19, with high overall satisfaction. However, gaps were identified in provision of psychological support and 20% of participants reported that they were unlikely to use telehealth again. The reorganisation of cancer care increased the psychological and practical burden on carers, with hospital visitation restrictions and appointment changes reducing their ability to provide essential support. COVID-19 has exacerbated a stressful and uncertain time for people affected by cancer and healthcare workers. Service reconfiguration and the adoption of telehealth have been essential adaptations for the pandemic response, offering long-term value. However, our findings highlight the need to better integrate psychosocial support and the important role of carers into evolving pandemic response measures. Learnings from this study could inform service improvements that would benefit patients and carers longer-term.


2021 ◽  
Author(s):  
Jennifer R. Sedgewick ◽  
Anum Ali ◽  
Andreea Badea ◽  
Tracey Carr ◽  
Gary Groot

Abstract Background: In Saskatchewan, Canada, Indigenous cancer care services at the municipal, provincial, and federal levels are intended to improve quality care but can result in a complex, fragmented, and multi-jurisdictional health care system. A multi-phase needs assessment project was initiated to document Indigenous cancer care needs. Guided by Indigenous patient partners, clinicians, academics, and policy makers, the present study reflects a needs assessment of Indigenous cancer supports from the perspectives of cancer care service providers.Methods: Qualitative data were collected through three group interviews with 20 service providers for cancer patients and their families at three Saskatchewan cities. Participants included chemotherapy and radiation nurses, social workers, a patient navigator, dieticians, and practicum students. A semi-structured interview guide was used to conduct the sessions to allow for freedom of responses. Data were recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Service providers’ perspectives were categorized into five themes: 1) addressing travel-related issues, 2) logistical challenges, 3) improvements to Indigenous-specific health care supports, 4) cultural sensitivity in health care, and 5) consistency in care. Supports differed for the two Indigenous groups, First Nations and Métis. Service providers made recommendations regarding how needs could be met. They saw language translation providers and Elder supports as important. Travel recommendations included medical taxis accommodating for more breaks to alleviate the uncomfortable side effects of cancer treatment and Indigenous-specific accommodations be provided. These recommendations aligned with supports that are available in four other Canadian provinces.Conclusions: These results identified gaps in supports and outlined recommendations to address barriers to cancer care from the perspectives of service providers. These recommendations may inform evidence-based health system interventions for Indigenous cancer patients and ultimately aim to improve cancer care services, quality of life, and health outcomes of Indigenous patients throughout their cancer journey.


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