COVID-19 vaccination perspectives among patients with Long COVID: A qualitative study.

Individuals who have Long COVID may have unique perspectives about COVID-19 vaccination due to the significant impact that COVID-19 has had on their lives. However, little is known about the specific vaccination perspectives among this patient population. The goal of our study was to improve our understanding of perspectives about COVID-19 vaccines among individuals with Long COVID. Interviews were conducted with patients receiving care at a post-COVID recovery clinic. Deductive thematic analysis was used to characterize participant perspectives according to the vaccine acceptance continuum framework, which recognizes a spectrum from vaccine acceptance to refusal. From interviews with 21 patients, we identified perspectives across the continuum of vaccine acceptance. These perspectives included acceptance of vaccines to prevent future illness, concerns about vaccine side effects on Long COVID symptoms, and refusal of vaccines due to perceived natural immunity. A limitation of our study is that these perspectives are specific to individuals receiving care at one post-COVID recovery clinic. In conclusion, our study demonstrates that some patients with Long COVID are uncertain about COVID-19 vaccines and boosters but may also be amenable to conversations that impact future vaccination acceptance. Patient perspectives should be considered when communicating recommendations for COVID-19 vaccinations to this population.

Patient Experiences Navigating Care Coordination For Long COVID: A Qualitative Study.

BACKGROUND: Little is known about how to best evaluate, diagnose, and treat long COVID, which presents challenges for patients as they seek care. OBJECTIVE: Understand experiences of patients as they navigate care for long COVID. DESIGN: Qualitative study involving interviews with patients about topics related to seeking and receiving care for long COVID. PARTICIPANTS: Eligible patients were at least 18 years of age, spoke English, self-identified as functioning well prior to COVID infection, and reported long COVID symptoms continued to impact their lives at 3 months or more after a COVID infection. APPROACH: Patients were recruited from a post-COVID recovery clinic at an academic medical center from August to September 2022. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis. KEY RESULTS: Participants (n=21) reported experiences related to elements of care coordination: access to care, evaluation, treatment, and ongoing care concerns. Some patients noted access to care was facilitated by having providers that listened to and validated their symptoms; other patients reported feeling their access to care was hindered by providers who did not believe or understand their symptoms. Patients reported confusion around how to communicate their symptoms when being evaluated for long COVID, and they expressed frustration with receiving test results that were normal or diagnoses that were not directly attributed to long COVID. Patients acknowledged that clinicians are still learning how to treat long COVID, and they voiced appreciation for providers who are willing to try new treatment approaches. Patients expressed ongoing care concerns, including feeling there is nothing more that can be done, and questioned long-term impacts on their aging and life expectancy. CONCLUSIONS: Our findings shed light on challenges faced by patients with long COVID as they seek care. Healthcare systems and providers should consider these challenges when developing strategies to improve care coordination for patients with long COVID.

Gaps in Patient-Centered Decision-Making Related to Complex Surgery: A Mixed-Methods Study.

INTRODUCTION: We sought to understand the perceptions of surgeons around patient preferred roles in decision-making and their approaches to patient-centered decision-making (PCDM). METHODS: A concurrent embedded mixed-methods design was utilized among a cohort of surgeons performing complex surgical procedures. Data were collected through online surveys. Associations between perceptions and PCDM approaches were examined. RESULTS: Among 241 participants, most respondents were male (67.2%) with an average age of 47.6 y (standard deviation = 10.3); roughly half (52.4%) had practiced medicine for 10 or more years. Surgeons most frequently agreed (94.2%) with the statement, "Patients prefer to make health decisions on their own after seriously considering their physician's opinion." Conversely, surgeons most frequently disagreed (73.0%) with the statement, "Patients prefer that their physician make health decisions for them." Nearly one-third (30.4%) of surgeon qualitative responses (n = 115) indicated that clinical/biological information would help them tailor their approach to PCDM. Only 12.2% of respondents indicated that they assess patient preferences regarding both decision-making and information needs. CONCLUSIONS: Surgeons most frequently agree that patients want to make their own health decisions after seriously considering their physicians opinion. A greater focus on what information surgeons should know before treatment decision-making may help optimize patient experience and outcomes related to complex surgical procedures.

Short-term and long-term financial toxicity from breast cancer treatment: a qualitative study.

PURPOSE: The rising cost of breast cancer treatment has increased patients' financial burden, intensifying an already stressful treatment process. Although researchers increasingly recognize the harmful impact of medical and nonmedical costs associated with cancer treatment, understanding patients' perspectives of financial toxicity is limited. We aimed to explore the topic of financial toxicity through the lived experiences of patients with breast cancer from groups at risk of social and economic marginalization. METHODS: We conducted semi-structured interviews with 50 women with breast cancer from four specific groups: Black women, Medicaid enrollees, rural residents, and women age ≤ 40. We transcribed, coded, and analyzed the data using deductive and inductive approaches. RESULTS: Two overarching themes captured patients' experiences of financial toxicity: short-term and long-term impacts. Short-term stressors included direct medical (e.g., co-pays, premiums), nonmedical (e.g., transportation, lodging), and indirect (e.g., job loss, reduced work hours) costs. Early in their treatments, patients' focus on survival took precedence over financial concerns. However, as the treatment course progressed, fear of consequences from compounding costs of care and financial distress negatively impacted patients' lifestyles and outlooks for the future. CONCLUSION: Programs addressing financial toxicity that look beyond early-phase interventions are needed. Specifically, patients struggling with the accumulation of treatment costs and the resultant stress require ongoing support. Long-term support is especially needed for groups vulnerable to financial instability and social marginalization.

Turning the Page on Breast Cancer in Ohio: Lessons learned from implementing a multilevel intervention to reduce breast cancer mortality among Black women.

BACKGROUND: Turning the Page on Breast Cancer (TPBC) uses a multilevel approach to reduce breast cancer (BC) mortality among Black women. TPBC intervenes by (1) improving health care facilities' ability to conduct effective BC screening, follow-up, and treatment; (2) involving community-based organizations; and (3) providing education and personal risk information through a culturally relevant website. Ohio has among the worst BC mortality rates in the United States for Black women. TPBC is in its third year of providing targeted interventions in 12 Ohio counties with particularly high BC rates among Black women. METHODS: TPBC enrolls health care facilities, collects organizational and patient data, and conducts key informant interviews to inform the provision of appropriate evidence-based interventions. TPBC engages Black communities through community-based organizations and social media advertising. The TPBC website offers BC information, connects Black women to community BC resources, and provides access to a risk-assessment tool. RESULTS: TPBC has provided tailored information packets, evidence-based interventions, and systematic support for improving the tracking and follow-up of breast health care among patients in 10 clinical partnerships. The project has provided education at community events monthly since mid-2021. The TPBC website (http://endbreastcancerohio.org) is promoted through social media (primarily Facebook) and community events to reach Black women aged 25-70 years. To date, 4108 unique users have visited the website, of whom 15.9% completed the risk assessment. CONCLUSIONS: Novel strategies are needed to address persistent disparities in BC outcomes among Black women. TPBC demonstrates the potential effectiveness of multiple methods of community-based, clinic-based, and web-based engagement. PLAIN LANGUAGE SUMMARY: Turning the Page on Breast Cancer (TPBC) aims to reduce breast cancer mortality among Black women in Ohio by conducting multilevel, community-engaged interventions in 12 counties. Women are provided risk information and education at virtual and in-person community events and through a community-friendly website that was launched in November 2020. Almost 4000 women have visited the website, which offers community-targeted information, urges screening for individuals at elevated risk, and offers access to patient navigation services; 655 users have used a breast cancer risk-assessment tool on the site. Community-based organizations conduct educational efforts. TPBC partners with health care facilities, which are taught to improve their ability to conduct effective breast cancer screening, follow-up, and treatment. So far, TPBC has provided educational information, evidence-based intervention lists, tailored information packets, and ongoing quarterly support to partners in 10 counties. Evaluation will focus on aggregated data for screening and genetic testing referral at the clinic level.

Understanding Concerns about COVID-19 and Vaccination: Perspectives from Kidney Transplant Recipients.

The COVID-19 pandemic poses a significant risk for immunosuppressed groups such as transplant patients. The purpose of this study was to improve our understanding of the impact of the COVID-19 pandemic on kidney transplant recipients, including their views on COVID-19 vaccination. Semi-structured interviews were conducted from December 2021 to August 2022 with 38 kidney transplant recipients who had an appointment with their transplant care team within the previous 6 months. We used qualitative thematic analysis to characterize the perspectives of interviewees. Regardless of COVID-19 vaccination status, most interviewees reported utilizing public health measures such as masking, hand washing, and avoiding crowds to protect themselves against COVID-19. Vaccinated interviewees (n = 31) noted that they chose to receive a COVID-19 vaccine because of their increased risk due to their immunocompromised state. For unvaccinated interviewees (n = 7), reasons for not receiving a COVID-19 vaccine included concerns about the safety and efficacy of the vaccine. Both vaccinated and unvaccinated interviewees expressed concerns about the lack of adequate testing of the vaccine in transplant patients and questioned if the vaccine might have unknown side effects for transplant recipients. Regardless of the vaccination status, most interviewees noted having trust in their healthcare team. Interviewees also described interpersonal tensions that arose during the pandemic, many of which surrounded vaccination and other preventive measures that were important to participants to protect their health. Together, these data demonstrate differing concerns and experiences related to the COVID-19 pandemic for vaccinated and unvaccinated transplant recipients. These findings highlight the unique needs of transplant recipients and reveal opportunities to support this vulnerable patient population in efforts to protect their health as the COVID-19 pandemic evolves.

Perspectives on Challenges and Opportunities for Interoperability: Findings From Key Informant Interviews With Stakeholders in Ohio.

BACKGROUND: Interoperability-the exchange and integration of data across the health care system-remains a challenge despite ongoing policy efforts aimed at promoting interoperability. OBJECTIVE: This study aimed to identify current challenges and opportunities to advancing interoperability across stakeholders. METHODS: Primary data were collected through qualitative, semistructured interviews with stakeholders (n=24) in Ohio from July to October 2021. Interviewees were sampled using a stratified purposive sample of key informants from 4 representative groups as follows: acute care and children's hospital leaders, primary care providers, behavioral health providers, and regional health information exchange networks. Interviews focused on key informant perspectives on electronic health record implementation, the alignment of public policy with organizational strategy, interoperability implementation challenges, and opportunities for health information technology. The interviews were transcribed verbatim followed by rigorous qualitative analysis using directed content analysis. RESULTS: The findings illuminate themes related to challenges and opportunities for interoperability that align with technological (ie, implementation challenges, mismatches in interoperability capabilities across stakeholders, and opportunities to leverage new technology and integrate social determinants of health data), organizational (ie, facilitators of interoperability and strategic alignment of participation in value-based payment programs with interoperability), and environmental (ie, policy) domains. CONCLUSIONS: Interoperability, although technically feasible for most providers, remains challenging for technological, organizational, and environmental reasons. Our findings suggest that the incorporation of end user considerations into health information technology development, implementation, policy, and standard deployment may support interoperability advancement.

Diversity of Participation in Clinical Trials and Influencing Factors: Findings from the Health Information National Trends Survey 2020.

BACKGROUND: Clinical trial diversity is critical to advance health and health equity. Research addressing the discrepancy between goals of achieving clinical trial diversity and realities of study enrollment remains underdeveloped. OBJECTIVE: This study aims to examine the association between race/ethnicity and clinical trial invitation, participation, knowledge, and sources of influence on clinical trial participation. DESIGN AND PARTICIPANTS: A cross-sectional, observational study using nationally representative data from 3689 US adults (≥ 18 years of age) who responded to the Health Information National Trends Survey fielded from February 24 to June 15, 2020. MAIN MEASURES: Primary outcomes included clinical trial invitation, participation, knowledge, and sources of influence on participation. The independent variable of interest is self-reported race/ethnicity. KEY RESULTS: Respondents identifying as non-Hispanic Black (relative to non-Hispanic White) had higher odds of being invited into a clinical trial (adjusted odds ratio: 2.0, 95% confidence interval (CI): 1.1, 3.7), but no differences in odds of participation were observed by race/ethnicity. Respondents from all races/ethnicities reported that personal healthcare providers were the most trusted source of clinical trial information. Hispanic (marginal effect (ME): - 0.09; 95% CI: - 0.16, - 0.03), non-Hispanic Black (ME: - 0.11; 95% CI: - 0.18, - 0.04), and non-Hispanic other (ME: - 0.11; 95% CI: - 0.19, - 0.02) respondents had lower odds than non-Hispanic White respondents of saying they would be influenced "a lot" by their doctor encouraging participation. Non-Hispanic Black respondents had significantly lower odds (relative to non-Hispanic White) of indicating family encouragement would influence their clinical trial participation decision "a lot" (ME: - 0.09; 95%: CI: - 0.14, - 0.03). CONCLUSION: While personal healthcare providers were trusted sources of information, racial/ethnic minority populations noted lower odds of clinical trial participation influence from providers and family. Thus, it is imperative for the healthcare, government, and industry organizations to build trust in medicine and science.