Background: Given the high risk of COVID-19 mortality, patients with cancer may be vulnerable to fear of COVID-19, adverse psychological outcomes, and health care delays.Methods: This longitudinal study surveyed the pandemic's impact on patients with cancer (N= 1529) receiving Patient Advocate Foundation services during early and later pandemic. Generalized estimating equation with repeated measures was conducted to assess the effect of COVID-19 on psychological distress. Logistic regression with repeated measures was used to assess the effect of COVID-19 on any delays in accessing health care (e.g., specialty care doctors, laboratory, or diagnostic testing, etc.).Results: Among 1199 respondents, 94% considered themselves high risk for COVID-19. Respondents with more fear of COVID-19 had a higher mean psychological distress score (10.21; 95% confidence intervals [CI] 9.38-11.03) compared to respondents with less fear (7.55; 95% CI 6.75-8.36). Additionally, 47% reported delaying care. Respondents with more fear of COVID-19 had higher percentages of delayed care than those with less (56; 95% CI 39%-72% vs. 44%; 95% CI 28%-61%). These relationships persisted throughout the pandemic. For respondents with a COVID-19 diagnosis in their household (n = 116), distress scores were similar despite higher delays in care (58% vs. 27%) than those without COVID-19.Conclusions: Fear of COVID-19 is linked to psychological distress and delays in care among patients with cancer. Furthermore, those who are personally impacted see exacerbated cancer care delays. Timely psychosocial support and health care coordination are critical to meet increased care needs of patients with cancer during the COVID-19 pandemic.
Diabetes and its comorbidities are leading causes of morbidity and mortality in the United States and disproportionately in Louisiana. Chronic care management (CCM) efforts, such as care coordination models, are important initiatives in mitigating the impact of diabetes, such as poorer health outcomes and increased costs. This study examined one such effort, the Centers for Medicare & Medicaid Services' non-face-to-face CCM reimbursement program, for patients with diabetes and at least 1 other chronic condition in Louisiana. This qualitative study included interviews with patients in this program and health care providers and system leaders implementing the program. Results include lessons learned from health system leadership relating to CCM design and implementation, challenges experienced, overlapping initiatives, perceived benefits, performance, billing, and health information technology. Another key finding is that co-pays seem to be a barrier to patient interest in participation in non-face-to-face CCM, especially given that the value of the program is not completely clear to patients. A common strategy to address this co-pay barrier is to target dual eligibles, as Medicaid will cover the co-pay. However, widespread use of such strategies may indirectly exclude individuals who need and may also benefit from non-face-to-face CCM.
Background:Patient-centered research requires a focus on the needs and priorities of patients. Because patient engagement can result in the discovery of important topics not currently prioritized by research programs, topic generation, and prioritization activities conducted with patients, caregivers, and other stakeholders are essential. To develop patient-centered research agendas for obesity and diabetes, the Research Action for Health Network conducted topic generation and prioritization activities with multistakeholder research advisory groups.Objectives:The purpose of this case study was to demonstrate how methods for engaging patients in topic generation and prioritization can be implemented in practice for the development of a patient-centered research agenda.Research Design:Four multistakeholder groups comprising patients, clinicians, and researchers met 4–5 times between November 2014 and July 2015 to generate and prioritize topics for obesity and diabetes research. Topics were prioritized using an iterative engagement process, in which themes were identified and resulting topics were refined and ranked over multiple meetings.Participants:Sixty-four patients, clinicians, and researchers participated in 2 obesity and 2 diabetes advisory groups. The majority of participants (64.0%) were patients, followed by clinicians (23.4%), researchers (9.4%), and parents of children with diabetes (3.1%).Results:Ten and 12 priority topics were identified for obesity and diabetes, respectively. The resulting research agendas were disseminated to patients, researchers, and clinicians.Conclusions:Patient engagement has the potential to enrich our understanding of patient priorities for research. The results from this process suggest that convening in-person multistakeholder groups can be an effective way to generate research topics that reflect patients’ priorities. Engagement strategies should be focused not only on the development of patient-centered research topics but also on the implementation of these topics into research studies.
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