Through the Lens of Patient Partners: Challenges in Accrual of Older Adults to NCI Clinical Trials.

The workshop "Engaging Older Adults in Cancer Clinical Trials Conducted in the NCI Clinical Trials Network: Challenges and Opportunities" included a Patient Stakeholder Workgroup that explored the needs and concerns of older adults with cancer regarding clinical trials. To accomplish this, the workgroup conducted patient focus groups in which participants were interviewed, recorded conversations were analyzed and coded, and salient themes were identified. The focus groups identified general barriers to accrual such as complex consent forms, general communication, restrictive eligibility, nonreferrals, patient costs, cultural insensitivity, limited accessibility in community settings, and transportation issues. They also identified the influence of knowledgeable information presenters, improved care, family or caregiver support, and the desire to help others as drivers or reasons to participate in clinical trials. The workshop concluded that multi-level interventions could be used to increase the accrual of older adults to National Cancer Institute clinical trials as well as others.

The National Cancer Institute and Cannabis and Cannabinoids Research.

The landscape of both recreational and medicinal cannabis use has changed dramatically over the past decade; however, research examining the risks and benefits of cannabis and cannabinoid use has lagged significantly behind the increased media promotion and their use by the general public and cancer patients. The National Cancer Institute (NCI) has supported cannabis-related research projects and funding opportunity announcements. In addition, NCI organized a virtual symposium on December 15-18, 2020, to discuss recent research findings on the use of cannabis and cannabinoids in relationship to cancer risk, prevention, and care. Specifically, the symposium sought to highlight the state of the science regarding cannabis, including the chemical constituents of cannabis (eg, cannabinoids), and cancer research involving cannabis, including cancer epidemiology, use in cancer patients, cancer biology and prevention, and preclinical and clinical cancer symptom and treatment side effect management with cannabis and cannabinoids as therapeutics. The symposium identified promising areas of future study, current barriers to conducting the research, and strategies to overcome those barriers. The series of papers in this special edition provide a summary of the symposium sessions as well as a synopsis of opportunities and challenges related to conducting research in this area.

Reported Importance and Access to Health Care Providers Who Understand or Share Cultural Characteristics With Their Patients Among Adults, by Race and Ethnicity.

Objective-This report examines racial and ethnic differences in the reported importance and frequency of seeing culturally competent health care providers among U.S. adults. Methods-Using the 2017 National Health Interview Survey, estimates of the importance and frequency of seeing health care providers who shared or understood respondents' culture were examined by race and Hispanic ethnicity, and stratified by other demographic characteristics. Results-Among adults who had seen a health care professional in the past 12 months, the percentage of non-Hispanic white adults who thought it was very important to have a health care provider who shared or understood their culture was significantly lower than that among all other race and Hispanic-ethnicity groups. Among those who thought it was at least slightly important to have a health care provider who shared or understood their culture, minority groups were generally more likely to report never being able to see a culturally similar health care provider compared with non-Hispanic white adults, and this pattern persisted regardless of sex, age group, or urbanicity.

Using social determinants of health to link health workforce diversity, care quality and access, and health disparities to achieve health equity in nursing.

It is widely accepted that diversifying the nation's health-care workforce is a necessary strategy to increase access to quality health care for all populations, reduce health disparities, and achieve health equity. In this article, we present a conceptual model that utilizes the social determinants of health framework to link nursing workforce diversity and care quality and access to two critical population health indicators-health disparities and health equity. Our proposed model suggests that a diverse nursing workforce can provide increased access to quality health care and health resources for all populations, and is a necessary precursor to reduce health disparities and achieve health equity. With this conceptual model as a foundation, we aim to stimulate the conceptual and analytical work-both within and outside the nursing field-that is necessary to answer these important but largely unanswered questions.

A blueprint for genomic nursing science.

PURPOSE: This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. ORGANIZING CONSTRUCTS: A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. FINDINGS: The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. CONCLUSIONS: The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the federal government. CLINICAL RELEVANCE: This genomic nursing science blueprint targets research to build the evidence base to inform integration of genomics into nursing practice and regulation (such as nursing licensure requirements, institutional accreditation, and academic nursing school accreditation).

The Continuing Umbrella of Research Experiences (CURE): a model for training underserved scientists in cancer research.

Mentoring is a critical aspect of research and training; and the adoption of a successful mentoring model for guiding researchers through the educational pipeline is lacking. The Continuing Umbrella of Research Experiences (CURE) program was established in the Comprehensive Minority Biomedical Branch; which is part of the National Cancer Institute. This program offers unique training and career development opportunities to enhance diversity in cancer research. The CURE initiative focuses on broadening the cadre of underserved investigators engaging in cancer research. CURE begins with high school students and fosters scientific, academic and research excellence throughout the trainee's educational progression. The program supports students throughout the entirety of their training career. During this period, the trainee matures into a competitive early stage investigator; capable of securing advanced research project funding in academic and industry workforces. Thus, the CURE program provides a comprehensive vehicle for training and reinforces the critical mass of underserved investigators conducting cancer research.

Race, ethnicity, and pain among the U.S. adult population.

INTRODUCTION: There is reliable evidence that racial/ethnic minorities suffer disproportionately from unrelieved pain compared with Whites. Several factors may contribute to disparities in pain management. Understanding how these factors influence effective pain management among racial/ethnic minority populations would be helpful for developing tailored interventions designed to eliminate racial/ethnic disparities in pain management. We conducted a review of the literature to explore the interaction between race/ethnicity, cultural influences; pain perception, assessment, and communication; provider and patient characteristics; and health system factors and how they might contribute to racial/ethnic disparities in receipt of effective pain management. METHODS: The published literature from 1990-2008 was searched for articles with data on racial/ethnic patterns of pain management as well as racially, ethnically, and culturally-specific attitudes toward pain, pain assessment, and communication; provider prescribing patterns; community access to pain medications; and pain coping strategies among U.S. adults. RESULTS: The literature suggests that racial/ethnic disparities in pain management may operate through limited access to health care and appropriate analgesics; patient access to or utilization of pain specialists; miscommunication and/or misperceptions about the presence and/or severity of pain; patient attitudes, beliefs, and behaviors that influence the acceptance of appropriate analgesics and analgesic doses; and provider attitudes, knowledge and beliefs about patient pain.

BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience.

BACKGROUND: When women from families with a known BRCA1 or BRCA2 mutation test negative for the family mutation, it is assumed that they will transition their personal cancer risk perception from high to average risk. However, there are scant data regarding the experience of mutation-negative women after genetic testing disclosure, particularly related to the shift of risk perception from assumed mutation-positive to actual mutation-negative. This study was designed to explore cancer risk perception and the experience of being a mutation-negative woman within a known BRCA1/2 mutation-positive family. METHODS: We employed a qualitative descriptive design and convened a sample of 13 women who contributed in-depth, semi-structured telephone interviews (audio-recorded and transcribed verbatim) and performed qualitative content analysis with NVivo 2.0 software. RESULTS: Six major content areas emerged from interview data: (i) rationale for initial involvement in the breast imaging study, (ii) rationale for continued participation, (iii) experience of living in a multiple-case family, (iv) risk perception: the personal meaning of mutation-negative status, (v) opinions regarding cancer aetiology and (vi) communication patterns between mutation-negative and mutation-positive family members. CONCLUSIONS: Living in a hereditary breast and ovarian cancer family is a complex experience that affects cognitive, emotional and social functioning. Our findings indicate that mutation-negative women may have unmet psychosocial needs that must be addressed by health-care professionals, particularly in the primary-care setting following genetic disclosure of a potentially reassuring result regarding their lack of the very high cancer risks associated with BRCA1/2 mutations.

Information needs and sources of information among cancer patients: a systematic review of research (1980-2003).

Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to ensuring quality care. We reviewed 112 articles published from 1980 to 2003 and developed a typology summarizing cancer patients' information needs and the sources from which they receive information. The majority of articles focused on information needs and sources during the diagnosis and treatment phase. Thus, the most frequent information need was treatment-related (38.1%). The most frequent information source was health professionals (27.3%). We examined patients' information needs and sources along the continuum of care and found that during diagnosis and treatment, information needs about the stage of disease, treatment options, and side-effects of treatment were prominent; during post-treatment, patients continued to need information about treatment, and information about recovery was also important. Future research should examine cancer patients' information needs and sources throughout their cancer journey.

Storytelling as a method to teach African American women breast health information.

BACKGROUND: The purpose of this study was to explore the use of storytelling as a method to teach breast health information to older African American women. METHODS: A qualitative design utilizing the focus-group method. RESULTS: Six story types (categories) emerged from the focus-group data and were integrated into the breast health education class. Categories were: 1) loss, 2) pain, 3) suffering, 4) fear and worry/stress, 5) death, and 6) faith in God and prayer. Three major outcomes resulted from the storytelling format: 1) peer teaching enhanced learning, 2) incorrect information was identified and clarified, and 3) personal experiences were validated. CONCLUSIONS: Integration of African American women's self-identified issues and concerns with breast health messages through storytelling resulted in a meaningful teaching-learning experience.