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BackgroundThere is a growing body of academic literature focusing on the significant financial burdens placed on people living with cancer, but little evidence exists on the impact of rising costs of care in other vulnerable populations. This financial strain, also known as financial toxicity, can impact behavioral, psychosocial, and material domains of life for people diagnosed with chronic conditions and their care partners. New evidence suggests that populations experiencing health disparities, including those with dementia, face limited access to health care, employment discrimination, income inequality, higher burdens of disease, and exacerbating financial toxicity. ObjectiveThe three study aims are to (1) adapt a survey to capture financial toxicity in people living with dementia and their care partners; (2) characterize the degree and magnitude of different components of financial toxicity in this population; and (3) empower the voice of this population through imagery and critical reflection on their perceptions and experiences relating to financial toxicity. MethodsThis study uses a mixed methods approach to comprehensively characterize financial toxicity among people living with dementia and their care partners. To address aim 1, we will adapt elements from previously validated and reliable instruments, including the Comprehensive Score for Financial Toxicity and Patient-Reported Outcomes Measurement Information System, to develop a financial toxicity survey specific to dyads of people living with dementia and their care partners. A total of 100 dyads will complete the survey, and data will be analyzed using descriptive statistics and regression models to address aim 2. Aim 3 will be addressed using the process of “photovoice,” which is a qualitative, participatory research method that combines photography, verbal narratives, and critical reflection by groups of individuals to capture aspects of their environment and experiences with a certain topic. Quantitative results and qualitative findings will be integrated using a validated, joint display table mixed methods approach called the pillar integration process. ResultsThis study is ongoing, with quantitative findings and qualitative results anticipated by December 2023. Integrated findings will enhance the understanding of financial toxicity in individuals living with dementia and their care partners by providing a comprehensive baseline assessment. ConclusionsAs one of the first studies on financial toxicity related to dementia care, findings from our mixed methods approach will support the development of new strategies for improving the costs of care. While this work focuses on those living with dementia, this protocol could be replicated for people living with other diseases and serve as a blueprint for future research efforts in this space. International Registered Report Identifier (IRRID)DERR1-10.2196/47255

Introduction The COVID-19 pandemic spurred telehealth use in US oncological care but there remains limited data on the onco-primary cancer survivorship population. We investigated patterns of telehealth use during the pandemic and factors driving utilization.Methods and Materials Retrospective study of patients aged 21 years and older diagnosed with breast, colorectal, prostate or non-small lung cancer (stages 1–4). The study period evaluated was defined as during COVID-19: March 1, 2020–April 30, 2021. Patient cohorts were defined as “ever telehealth users” and “never telehealth users”. We tested between-cohort differences in baseline characteristics using Pearson's chi-square tests.Results We identified 4931 onco-primary patients. Of these patients 36.7% (n= 1812) were “ever cancer telehealth users” and 63.3% (n = 3119) patients were “never cancer telehealth users.” Among telehealth users, 44.6% were 65 years or older at cancer diagnosis, 24% were Black, 24.1% lived in rural settings and the most common cancer types were breast (40.4%) followed by prostate (30.4%). “Never telehealth user” had similar demographics. Increased telehealth use was seen in those patients with a higher baseline comorbidity burden (RR 1.14; 95% CI 1.06–1.23), prostate cancer (Prostate RR 1.33; 95% CI 1.16–1.54) and advanced stage cancer (RR 1.20; 95% CI 1.08–1.34).Conclusion Telehealth, while not as heavily utilized, remains an important care tool in marginalized rural and Black onco-primary care patients.Implications for Practice This paper highlights baseline use rates of telehealth in the onco-primary patients including more health disparate populations and helps guides future healthcare system investments in this technology.

Background: One out of five patients with muscle-invasive bladder cancer undergo radical cystectomy—a guideline-recommended treatment. Previous studies have primarily evaluated patient characteristics associated with the use of radical cystectomy, ignoring potential nesting of data. Objective: To determine the impact of patient, diagnosing urologist, and hospital characteristics on the variation in the use of radical cystectomy. Design, setting, and participants: This is a retrospective cohort study using the Surveillance, Epidemiology, and End Results Registry (SEER)-Medicare linked database. Outcome measurements and statistical analysis: A total of 7097 muscle-invasive bladder cancer patients and 4601 diagnosing urologists affiliated to 822 hospitals from January 1, 2002 to December 31, 2012 were analyzed. Multilevel logistic regression analyses were used to determine variation and factors associated with the use of radical cystectomy. Results and limitations: Of the 7097 patients, only 27% underwent radical cystectomy. The intraclass correlation coefficient for variation in the use of radical cystectomy attributed to the hospital level was 4.3%. Higher radical cystectomy volume by diagnosing urologists (more than five vs zero to one surgery: odds ratio [OR], 1.27; 95% confidence interval [CI], 1.00–1.62) and hospitals (more than five vs zero to four surgeries: OR,1.48; 95% CI, 1.14–1.93) was associated with increased use of radical cystectomy. Patients diagnosed by female rather than male urologists were more likely to undergo radical cystectomy (OR, 1.32; 95% CI, 1.07–1.62). Conclusions: We found that 4.3% variation in the use of radical cystectomy was attributed to the hospital level, leaving 95.7% variation in use unexplained. We identified significantly increased use among higher-volume and female diagnosing urologists. These findings support further investigation into measures beyond hospital volume, which largely impact the utilization of radical cystectomy. Patient summary: In this large population-based study, we found that 4.3% of variation in the use of radical cystectomy was attributed to the hospital level, leaving 95.7% variation in use unexplained. Higher radical cystectomy volume of diagnosing urologists and female urologists were independently associated with increased use of radical cystectomy. These findings support further investigation into measures beyond hospital volume, which largely impact the utilization of radical cystectomy.