Health and healthcare equity within the Canadian cancer care sector: a rapid scoping review.

BACKGROUND: Despite a publicly-funded healthcare system, alarming cancer-related health and healthcare inequities persist in Canada. However, it remains unclear how equity is being understood and taken up within the Canadian cancer context. Our objective was to identify how health and healthcare equity are being discussed as goals or aims within the cancer care sector in Canada. METHODS: A rapid scoping review was conducted; five biomedical databases, 30 multidisciplinary websites, and Google were searched. We included English-language documents published between 2008 and 2021 that discussed health or healthcare equity in the Canadian cancer context. RESULTS: Of 3860 identified documents, 83 were included for full-text analysis. The prevalence of published and grey equity-oriented literature has increased over time (2008-2014 [n = 20]; 2015-2021 [n = 62]). Only 25% of documents (n = 21) included a definition of health equity. Concepts such as inequity, inequality and disparity were frequently used interchangeably, resulting in conceptual muddling. Only 43% of documents (n = 36) included an explicit health equity goal. Although a suite of actions were described across the cancer control continuum to address equity goals, most were framed as recommendations rather than direct interventions. CONCLUSION: Health and healthcare equity is a growing priority in the cancer care sector; however, conceptual clarity is needed to guide the development of robust equity goals, and the development of sustainable, measurable actions that redress inequities across the cancer control continuum. If we are to advance health and healthcare equity in the cancer care sector, a coordinated and integrated approach will be required to enact transformative and meaningful change.

Occupational and Financial Setbacks in Caregivers of People with Colorectal Cancer: Considerations for Caregiver-Reported Outcomes.

Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.

To share or not to share: communication of caregiver-reported outcomes when a patient has colorectal cancer.

BACKGROUND: The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. RESULTS: From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. CONCLUSIONS: The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.

At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer.

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers' assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient's life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.

Attending to Methodological Challenges in Qualitative Research to Foster Participation of Individuals with Chronic Critical Illness and Communication Impairments.

Individuals with chronic critical illness experience multiple complex physiological disturbances including ongoing respiratory failure, requiring prolonged mechanical ventilation, and thus communication impairments. In conducting a qualitative interpretive description study, we sought to ensure that individuals with chronic critical illness themselves were included as participants. Our commitment to recruiting these individuals to the study and ensuring their data meaningfully informed the analysis and findings required us to reconsider and challenge some of the traditional notions of high-quality qualitative research and develop appropriate practical strategies. These strategies included: (1) centering participant abilities and preferences, (2) adopting a flexible approach to conducting interviews, (3) engaging in a therapeutic relationship, and (4) valuing "thin" data. In this article, we extend existing literature describing the complexities of conducting research with individuals with communication impairments and strategies to consider in the hopes of informing future research with other populations historically excluded from study participation.

Health-related expectations of the chronically critically ill: a multi-perspective qualitative study.

BACKGROUND: Those who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations. METHODS: In this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques. RESULTS: There was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family. CONCLUSIONS: The emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.

Impact of integrated translational research on clinical exome sequencing.

PURPOSE: Exome sequencing often identifies pathogenic genetic variants in patients with undiagnosed diseases. Nevertheless, frequent findings of variants of uncertain significance necessitate additional efforts to establish causality before reaching a conclusive diagnosis. To provide comprehensive genomic testing to patients with undiagnosed disease, we established an Individualized Medicine Clinic, which offered clinical exome testing and included a Translational Omics Program (TOP) that provided variant curation, research activities, or research exome sequencing. METHODS: From 2012 to 2018, 1101 unselected patients with undiagnosed diseases received exome testing. Outcomes were reviewed to assess impact of the TOP and patient characteristics on diagnostic rates through descriptive and multivariate analyses. RESULTS: The overall diagnostic yield was 24.9% (274 of 1101 patients), with 174 (15.8% of 1101) diagnosed on the basis of clinical exome sequencing alone. Four hundred twenty-three patients with nondiagnostic or without access to clinical exome sequencing were evaluated by the TOP, with 100 (9% of 1101) patients receiving a diagnosis, accounting for 36.5% of the diagnostic yield. The identification of a genetic diagnosis was influenced by the age at time of testing and the disease phenotype of the patient. CONCLUSION: Integration of translational research activities into clinical practice of a tertiary medical center can significantly increase the diagnostic yield of patients with undiagnosed disease.

Sources of Distress for Residents With Chronic Critical Illness and Ventilator Dependence in Long-Term Care.

Limited understanding of the psychological challenges experienced by individuals with chronic critical illness hampers efforts to deliver quality care. We used an interpretive description approach to explore sources of distress for individuals with chronic critical illness in residential care, wherein we interviewed six residents, 11 family members, and 21 staff. Rather than discuss physical symptoms, sources of distress for residents were connected to feeling as though they were a patient receiving medical care as opposed to an individual living in their home. The tension between medical care and the unmet need for a sense of home was related to care beyond the physical being overlooked, being dependent on others but feeling neglected, frustration with limited choice and participation in decision making, and feeling sad and alone. Efforts to refine health care for individuals with chronic critical illness must foster a sense of home while ensuring individuals feel safe and supported to make decisions.

Educational attainment predicts negative perceptions women have of their own climate change knowledge.

Education may encourage personal and collective responses to climate change, but climate education has proven surprisingly difficult and complex. Self-perception of knowledge and intelligence represent one factor that may impact willingness to learn about climate change. We explored this possibility with a case study in Raleigh, North Carolina in 2015 (n = 200). Our goal was to test how gender and ethnicity influenced perceptions people had of their own climate change knowledge. Survey respondents were asked how strongly they agreed with the statement "I feel knowledgeable about climate change" (1 = strongly disagree, and 5 = strongly agree). Our survey instrument also included demographic questions about race, age, income, gender, and education, as well as respondent's experience with natural disasters and drought. We observed an interaction between education and gender where women's self-perceived knowledge was higher than men among people with low levels of educational attainment, but was higher for men than women among people with high levels of educational attainment. In addition, minority respondents self-reported lower perceived climate change knowledge than white respondents, regardless of educational attainment. This study enhances our understanding of the gender gap in self-perceptions of climate knowledge by suggesting it is contingent on educational attainment. This could be the result of stereotype-threat experienced by women and minorities, and exacerbated by educational systems. Because people who question their knowledge are often more able to learn, particularly in ideologically charged contexts, highly educated women and minorities may be more successful learning about climate change than white men.

Experience with precision genomics and tumor board, indicates frequent target identification, but barriers to delivery.

BACKGROUND: The ability to analyze the genomics of malignancies has opened up new possibilities for off-label targeted therapy in cancers that are refractory to standard therapy. At Mayo Clinic these efforts are organized through the Center for Individualized Medicine (CIM). RESULTS: Prior to GTB, datasets were analyzed and integrated by a team of bioinformaticians and cancer biologists. Therapeutically actionable mutations were identified in 65% (92/141) of the patients tested with 32% (29/92) receiving genomically targeted therapy with FDA approved drugs or in an independent clinical trial with 45% (13/29) responding. Standard of care (SOC) options were continued by 15% (14/92) of patients tested before exhausting SOC options, with 71% (10/14) responding to treatment. Over 35% (34/92) of patients with actionable targets were not treated with 65% (22/34) choosing comfort measures or passing away. MATERIALS AND METHODS: Patients (N = 165) were referred to the CIM Clinic between October 2012 and December 2015. All patients received clinical genomic panel testing with selected subsets receiving array comparative genomic hybridization and clinical whole exome sequencing to complement and validate panel findings. A genomic tumor board (GTB) reviewed results and, when possible, developed treatment recommendations. CONCLUSIONS: Treatment decisions driven by tumor genomic analysis can lead to significant clinical benefit in a minority of patients. The success of genomically driven therapy depends both on access to drugs and robustness of bioinformatics analysis. While novel clinical trial designs are increasing the utility of genomic testing, robust data sharing of outcomes is needed to optimize clinical benefit for all patients.

Beyond Impervious: Urban Land-Cover Pattern Variation and Implications for Watershed Management.

Impervious surfaces degrade urban water quality, but their over-coverage has not explained the persistent water quality variation observed among catchments with similar rates of imperviousness. Land-cover patterns likely explain much of this variation, although little is known about how they vary among watersheds. Our goal was to analyze a series of urban catchments within a range of impervious cover to evaluate how land-cover varies among them. We then highlight examples from the literature to explore the potential effects of land-cover pattern variability for urban watershed management. High-resolution (1 m(2)) land-cover data were used to quantify 23 land-cover pattern and stormwater infrastructure metrics within 32 catchments across the Triangle Region of North Carolina. These metrics were used to analyze variability in land-cover patterns among the study catchments. We used hierarchical clustering to organize the catchments into four groups, each with a distinct landscape pattern. Among these groups, the connectivity of combined land-cover patches accounted for 40 %, and the size and shape of lawns and buildings accounted for 20 %, of the overall variation in land-cover patterns among catchments. Storm water infrastructure metrics accounted for 8 % of the remaining variation. Our analysis demonstrates that land-cover patterns do vary among urban catchments, and that trees and grass (lawns) are divergent cover types in urban systems. The complex interactions among land-covers have several direct implications for the ongoing management of urban watersheds.

Implementing individualized medicine into the medical practice.

There is increasing recognition that genomic medicine as part of individualized medicine has a defined role in patient care. Rapid advances in technology and decreasing cost combine to bring genomic medicine closer to the clinical practice. There is also growing evidence that genomic-based medicine can advance patient outcomes, tailor therapy and decrease side effects. However the challenges to integrate genomics into the workflow involved in patient care remain vast, stalling assimilation of genomic medicine into mainstream medical practice. In this review we describe the approach taken by one institution to further individualize medicine by offering, executing and interpreting whole exome sequencing on a clinical basis through an enterprise-wide, standalone individualized medicine clinic. We present our experience designing and executing such an individualized medicine clinic, sharing lessons learned and describing early implementation outcomes.

¿Qué es racismo?: awareness of racism and discrimination in Ecuador.

In the national consciousness, Ecuador is a mestizo nation. However, it is also an ethnically diverse nation with sizable minorities of indigenous and Afrodescended peoples. In national surveys, there is also a considerable minority who self-identify as blanco (white). Although there is strong evidence of continuing discrimination and prejudice toward both indigenous and Afro-descended peoples, there is little public discussion or political action addressing such issues. The emergence of a powerful and resilient indigenous movement in the late 1980s gained international interest and acclaim in the 1990s, in part because of the peaceful mobilization efforts and effective bargaining tactics of the movement. However, indigenous leaders usually have not engaged in a discourse of racismo and/or discriminación. There has been much less social movement solidarity and activism among Afro-Ecuadorians, but their leaders commonly employ a discourse of racismo and discriminación. In August and September 2004, a survey of more than eight thousand adult Ecuadorians was conducted in regard to racism and related topics. In this research, we use several measures from this survey that focus on awareness of and sensitivity to issues of racism, prejudice, and discrimination. Self-identification of respondents enables us to contrast the responses of whites, mestizos, Indians, and Afro-Ecuadorians to the measures. Other independent variables of interest are level of education, the region in which the respondent resides, and whether the respondent lives in an urban or rural area. Regression results show differences among the ethnic groups in levels of awareness of racism, but more powerful predictors are level of education and rural residence.

The Enterprise Data Trust at Mayo Clinic: a semantically integrated warehouse of biomedical data.

Mayo Clinic's Enterprise Data Trust is a collection of data from patient care, education, research, and administrative transactional systems, organized to support information retrieval, business intelligence, and high-level decision making. Structurally it is a top-down, subject-oriented, integrated, time-variant, and non-volatile collection of data in support of Mayo Clinic's analytic and decision-making processes. It is an interconnected piece of Mayo Clinic's Enterprise Information Management initiative, which also includes Data Governance, Enterprise Data Modeling, the Enterprise Vocabulary System, and Metadata Management. These resources enable unprecedented organization of enterprise information about patient, genomic, and research data. While facile access for cohort definition or aggregate retrieval is supported, a high level of security, retrieval audit, and user authentication ensures privacy, confidentiality, and respect for the trust imparted by our patients for the respectful use of information about their conditions.