Facilitators and barriers to reducing chemotherapy for early-stage breast cancer: a qualitative analysis of interviews with patients and patient advocates.

BACKGROUND: As the combination of systemic and targeted chemotherapies is associated with severe adverse side effects and long-term health complications, there is interest in reducing treatment intensity for patients with early-stage breast cancer (EBC). Clinical trials are needed to determine the feasibility of reducing treatment intensity while maintaining 3-year recurrence-free survival of greater than 92%. To recruit participants for these trials, it is important to understand patient perspectives on reducing chemotherapy. METHODS: We collected qualitative interview data from twenty-four patients with Stage II-III breast cancer and sixteen patient advocates. Interviews explored potential barriers and facilitators to participation in trials testing reduced amounts of chemotherapy. As the COVID-19 pandemic struck during data collection, seventeen participants were asked about the potential impact of COVID-19 on their interest in these trials. Interviews were audio-recorded and transcribed, and researchers used qualitative content analysis to code for dominant themes. RESULTS: Seventeen participants (42.5%) expressed interest in participating in a trial of reduced chemotherapy. Barriers to reducing chemotherapy included (1) fear of recurrence and inefficacy, (2) preference for aggressive treatment, (3) disinterest in clinical trials, (4) lack of information about expected outcomes, (5) fear of regret, and (6) having young children. Facilitators included (1) avoiding physical toxicity, (2) understanding the scientific rationale of reducing chemotherapy, (3) confidence in providers, (4) consistent monitoring and the option to increase dosage, (5) fewer financial and logistical challenges, and (6) contributing to scientific knowledge. Of those asked, nearly all participants said they would be more motivated to reduce treatment intensity in the context of COVID-19, primarily to avoid exposure to the virus while receiving treatment. CONCLUSIONS: Among individuals with EBC, there is significant interest in alleviating treatment-related toxicity by reducing chemotherapeutic intensity. Patients will be more apt to participate in trials testing reduced amounts of chemotherapy if these are framed in terms of customizing treatment to the individual patient and added benefit-reduced toxicities, higher quality of life during treatment and lower risk of long-term complications-rather than in terms of taking treatments away or doing less than the standard of care. Doctor-patient rapport and provider support will be crucial in this process.

Effect of COVID-19 on patient access to health services for noncommunicable diseases in Latin America: a perspective from patient advocacy organizations.

BACKGROUND: The COVID-19 pandemic has been felt acutely in Latin America with several countries having among the highest numbers of SARS-CoV-2 cases and related deaths. Individuals living with underlying health conditions have an increased risk of severe disease or death from COVID-19. Patient advocacy organizations often provide supportive services to these individuals and can offer a unique perspective of the patient experience. The objective of this study was to assess the effects of COVID-19 on access to health services in Latin America, as reported by patient advocacy organizations representing individuals living with autoimmune, chronic, and noncommunicable diseases. METHODS: A cross-sectional study was conducted in August 2020 with patient advocacy organizations in Latin America to measure perceived effects from COVID-19 and reported access to health services among individuals living with autoimmune, chronic, and noncommunicable diseases. An original, online survey was developed and deployed in Spanish and Portuguese. Univariate and bivariate analysis was conducted across two main subject areas: perceived patient effects from COVID-19 and patient access to health services. The main outcomes of analysis considered patient access to care during COVID-19 based on type of chronic illness and geographical region in Latin America. RESULTS: A total of 81 survey responses were analyzed. A majority (83%) of patient advocacy organizations reported their patients experienced delays receiving their treatment and care services; 52% experienced delays of 30 days or more. Telemedicine was considered available, but not accessible to patients (37%) and a majority (76%) of patients faced challenges with electronic prescriptions. Patients were not likely to receive a multi-month prescription from their doctor (38%) or successfully fill it at the pharmacy (26%). CONCLUSIONS: According to responses from patient advocacy organizations, individuals living with noncommunicable diseases in Latin America have faced unique challenges during the COVID-19 pandemic. As countries re-evaluate their health systems, it is critical that chronic diseases are considered so that all can fully realize the right to health.

Post-acute COVID-19 syndrome.

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the pathogen responsible for the coronavirus disease 2019 (COVID-19) pandemic, which has resulted in global healthcare crises and strained health resources. As the population of patients recovering from COVID-19 grows, it is paramount to establish an understanding of the healthcare issues surrounding them. COVID-19 is now recognized as a multi-organ disease with a broad spectrum of manifestations. Similarly to post-acute viral syndromes described in survivors of other virulent coronavirus epidemics, there are increasing reports of persistent and prolonged effects after acute COVID-19. Patient advocacy groups, many members of which identify themselves as long haulers, have helped contribute to the recognition of post-acute COVID-19, a syndrome characterized by persistent symptoms and/or delayed or long-term complications beyond 4 weeks from the onset of symptoms. Here, we provide a comprehensive review of the current literature on post-acute COVID-19, its pathophysiology and its organ-specific sequelae. Finally, we discuss relevant considerations for the multidisciplinary care of COVID-19 survivors and propose a framework for the identification of those at high risk for post-acute COVID-19 and their coordinated management through dedicated COVID-19 clinics.

Patient engagement in melanoma research: from bench to bedside.

Advances in research have transformed the management of melanoma in the past decade. In parallel, patient advocacy has gained traction, and funders are increasingly prioritizing patient and public involvement. Here we discuss the ways in which patients and the public can be engaged in different stages of the research process, from developing, prioritizing and refining the research question to preclinical studies and clinical trials, then finally to ongoing research in the clinic. We discuss the challenges and opportunities that exist at each stage in order to ensure that a representative population of patients and the public contribute to melanoma research both now and in the future.

Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses.

The COVID-19 pandemic has impacted the education of children around the world, forcing a large proportion of teaching to be carried out remotely. The implications of this disruption have yet to be fully elucidated, but initial assessments suggest that COVID-19-related school closures and reliance on virtual learning may have a long-term negative impact on educational attainment and future earnings as well as life expectancy of children in the United States. Among children with neurodegenerative disorders, such as neuronopathic mucopolysaccharidoses (MPS disorders), the effects of the pandemic are likely to be even greater. We aim to shine a spotlight on the impact of COVID-19 on the education, treatment and general wellbeing of children and families affected by MPS disorders by highlighting the important role that educators and therapists play in supporting the neurocognitive function and quality of life of children with neuronopathic MPS disorders. This article will serve as a resource that caregivers, educators, clinicians and therapists can use when considering how best to advocate for children with neuronopathic MPS disorders in circumstances where in-school teaching or in-clinic treatment is compromised or not possible. Given that the current pandemic is likely to have a prolonged course and impact and that similar epidemics and pandemics are a near certainty in the future, it is essential that steps are taken to support the learning and care of children with neuronopathic MPS disorders. We must prioritize strategies to safely resume this fragile community's access to in-person education and supportive care, and to address gaps that have emerged during prolonged pauses in access, whenever possible.

Prevalence and Characteristics of Advocacy Curricula in U.S. Medical Schools.

PURPOSE: Recent national events, including the COVID-19 pandemic and protests of racial inequities, have drawn attention to the role of physicians in advocating for improvements in the social, economic, and political factors that affect health. Characterizing the current state of advocacy training in U.S. medical schools may help set expectations for physician advocacy and predict future curricular needs. METHOD: Using the member school directory provided by the Association of American Medical Colleges, the authors compiled a list of 154 MD-granting medical schools in the United States in 2019-2020. They used multiple search strategies to identify online course catalogues and advocacy-related curricula using variations of the terms "advocacy," "policy," "equity," and "social determinants of health." They used an iterative process to generate a preliminary coding schema and to code all course descriptions, conducting content analysis to describe the structure of courses and topics covered. RESULTS: Of 134 medical schools with any online course catalogue available, 103 (76.9%) offered at least 1 advocacy course. Required courses were typically survey courses focused on general content in health policy, population health, or public health/epidemiology, whereas elective courses were more likely to focus specifically on advocacy skills building and to feature field experiences. Of 352 advocacy-specific courses, 93 (26.4%) concentrated on a specific population (e.g., children or persons with low socioeconomic status). Few courses (n = 8) focused on racial/ethnic minorities and racial inequities. CONCLUSIONS: Findings suggest that while most U.S. medical schools offer at least 1 advocacy course, the majority are elective rather than required, and the structure and content of advocacy-related courses vary substantially. Given the urgency to address social, economic, and political factors affecting health and health equity, this study provides an important and timely overview of the prevalence and content of advocacy curricula at U.S. medical schools.