Patricia A. Grady

El automanejo de las enfermedades crónicas: un método integral de atención

For both clinical and economic reasons, the increasing number of persons living with chronic conditions represents a public health issue of growing importance. Emphasizing patient responsibility, and acting in concert with the provider community, self-management represents a promising strategy for treating chronic conditions-moving beyond education to teaching individuals to actively identify challenges and solve problems associated with their illness. Self-management also shows potential as an effective paradigm across the prevention spectrum (primary, secondary, and tertiary) by establishing a pattern for health early in life and providing strategies for mitigating illness and managing it in later life. We suggest ways to advance research methods and practical applications of self-management as steps in its future development and implementation.For both clinical and economic reasons, the increasing number of persons living with chronic conditions represents a public health issue of growing importance. Emphasizing patient responsibility, and acting in concert with the provider community, self-management represents a promising strategy for treating chronic conditions-moving beyond education to teaching individuals to actively identify challenges and solve problems associated with their illness. Self-management also shows potential as an effective paradigm across the prevention spectrum (primary, secondary, and tertiary) by establishing a pattern for health early in life and providing strategies for mitigating illness and managing it in later life. We suggest ways to advance research methods and practical applications of self-management as steps in its future development and implementation.

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).

Translational research and nursing science

B asic research seeks to increase or advance knowledge through systematic investigation of a subject or phenomenon. In the healthcare sciences, basic research typically involves an exploration into physiologic processes at the level of the molecule, cell, tissue, or organism, and pathophysiologic mechanisms of injury or illness. Still, science does not thrive in a vacuum. As Louis Pasteur noted generations ago, there is a link between ‘‘science, and the application of science.’’ In a recent interview with The New York Times, National Institutes of Health (NIH) Director Dr. Francis S. Collins acknowledged the importance of disciplines such as biochemistry and genetics, but stated, ‘‘We are not the National Institutes of Basic Sciences.’’ He urged scientists to consider the clinical or therapeutic applications in their work, saying, ‘‘We have to make the case for what biomedical research has to offer the public.’’ The findings from basic studies in healthcare science drive progress toward deeper discoveries about the mechanisms of both health and disease, but their usefulness and impact may not be readily apparent. Improving how we apply these findings in real world settings promises to advance the capacity of science to address the increasingly complex health care challenges in our world today. The application of scientific findings to clinical practice is the function of a rapidly expanding field of science known as ‘‘translational research.’’ Nurse scientists are adept at studying how individuals respond to illness or adapt to changes, using data and observations derived from clinical settings to the design and development of their basic and applied research. Thus, the perspective of nurse scientists is vital to

Advancing Symptom Science Through Symptom Cluster Research: Expert Panel Proceedings and Recommendations

An overview of proceedings, findings, and recommendations from the workshop on “Advancing Symptom Science Through Symptom Cluster Research” sponsored by the National Institute of Nursing Research (NINR) and the Office of Rare Diseases Research, National Center for Advancing Translational Sciences, is presented. This workshop engaged an expert panel in an evidenced-based discussion regarding the state of the science of symptom clusters in chronic conditions including cancer and other rare diseases. An interdisciplinary working group from the extramural research community representing nursing, medicine, oncology, psychology, and bioinformatics was convened at the National Institutes of Health. Based on expertise, members were divided into teams to address key areas: defining characteristics of symptom clusters, priority symptom clusters and underlying mechanisms, measurement issues, targeted interventions, and new analytic strategies. For each area, the evidence was synthesized, limitations and gaps identified, and recommendations for future research delineated. The majority of findings in each area were from studies of oncology patients. However, increasing evidence suggests that symptom clusters occur in patients with other chronic conditions (eg, pulmonary, cardiac, and end-stage renal disease). Nonetheless, symptom cluster research is extremely limited and scientists are just beginning to understand how to investigate symptom clusters by developing frameworks and new methods and approaches. With a focus on personalized care, an understanding of individual susceptibility to symptoms and whether a “driving” symptom exists that triggers other symptoms in the cluster is needed. Also, research aimed at identifying the mechanisms that underlie symptom clusters is essential to developing targeted interventions.

Advancing Symptom Science Through Use of Common Data Elements.

BACKGROUND Use of common data elements (CDEs), conceptually defined as variables that are operationalized and measured in identical ways across studies, enables comparison of data across studies in ways that would otherwise be impossible. Although healthcare researchers are increasingly using CDEs, there has been little systematic use of CDEs for symptom science. CDEs are especially important in symptom science because people experience common symptoms across a broad range of health and developmental states, and symptom management interventions may have common outcomes across populations. PURPOSES The purposes of this article are to (a) recommend best practices for the use of CDEs for symptom science within and across centers; (b) evaluate the benefits and challenges associated with the use of CDEs for symptom science; (c) propose CDEs to be used in symptom science to serve as the basis for this emerging science; and (d) suggest implications and recommendations for future research and dissemination of CDEs for symptom science. DESIGN The National Institute of Nursing Research (NINR)-supported P20 and P30 Center directors applied published best practices, expert advice, and the literature to identify CDEs to be used across the centers to measure pain, sleep, fatigue, and affective and cognitive symptoms. FINDINGS We generated a minimum set of CDEs to measure symptoms. CONCLUSIONS The CDEs identified through this process will be used across the NINR Centers and will facilitate comparison of symptoms across studies. We expect that additional symptom CDEs will be added and the list will be refined in future work. CLINICAL RELEVANCE Symptoms are an important focus of nursing care. Use of CDEs will facilitate research that will lead to better ways to assist people to manage their symptoms.

Advancing the health of our aging population: a lead role for nursing science.

Today, people are living longer than ever before, and as the baby boomers age, the number of older adults is expected to increase exponentially over the coming decades. Combined, these 2 demographic shifts will lead to enormous challenges for society. They will require us to identify strategies to allow older adults to live independently for as a long as possible; provide health care and education for older adults who are selfmanaging multiple chronic illnesses; ensure that older adults in long-term care settings receive high-quality care; and support family members and friends who are caring for an older loved one with dementia and/or a disability.

The National Institutes of Health/National Institutes of Nursing Research intramural research program and the development of the National Institutes of Health Symptom Science Model.

The National Institute of Nursing Research (NINR) intramural research program conducts basic and biobehavioral symptom science research and provides training opportunities to the next generation of scientists. Recently, the NINR developed the Symptom Science Model to guide research. The model begins by identifying a complex symptom, which is then characterized into a phenotype with biological and clinical data, followed by the application of genomic and other discovery methodologies to illuminate targets for therapeutic and clinical interventions. Using the Symptom Science Model, the intramural program organizes and implements biobehavioral, symptom management, and tissue injury research. The model is also used as a framework for training and career development opportunities including on-campus trainings and research fellowship. The scientific goal of the intramural program is to enhance patient outcomes including health-related quality of life. Achieving this goal requires a long-term vision, continued resource investments, and a commitment to mentoring our next generation of scientists.

The national institute of nursing research explores opportunities in genetics research

Abstract Genetics offers many opportunities for nursing research, ranging from basic biologic and behavioral investigations to clinical and population studies, and nurse researchers offer a unique perspective and special expertise that is not otherwise found in genetics research. Nurse researchers can take leadership roles and contribute to basic genetic studies with their biologic, environmental, and behavioral linkages; the genetic determination of physiologic responses; and applied studies aimed at translating basic science findings into interventions to solve clinical problems.

Incorporating environmental sciences and nursing research: An NINR initiative

Abstract The environment is a pivotal determinant of human health and well-being, and understanding its impact is essential to improving public health. This article reflects the deliberations of a panel convened by the National Institute of Nursing Research to identify gaps in environmental sciences, along with research opportunities and challenges that could be explored through investigator-initiated clinical studies.

Recommendations of Common Data Elements to Advance the Science of Self‐Management of Chronic Conditions

PURPOSE Common data elements (CDEs) are increasingly being used by researchers to promote data sharing across studies. The purposes of this article are to (a) describe the theoretical, conceptual, and definition issues in the development of a set of CDEs for research addressing self-management of chronic conditions; (b) propose an initial set of CDEs and their measures to advance the science of self-management; and (c) recommend implications for future research and dissemination. DESIGN AND METHODS Between July 2014 and December 2015 the directors of the National Institute of Nursing Research (NINR)-funded P20 and P30 centers of excellence and NINR staff met in a series of telephone calls and a face-to-face NINR-sponsored meeting to select a set of recommended CDEs to be used in self-management research. A list of potential CDEs was developed from examination of common constructs in current self-management frameworks, as well as identification of variables frequently used in studies conducted in the centers of excellence. FINDINGS The recommended CDEs include measures of three self-management processes: activation, self-regulation, and self-efficacy for managing chronic conditions, and one measure of a self-management outcome, global health. CONCLUSIONS The self-management of chronic conditions, which encompasses a considerable number of processes, behaviors, and outcomes across a broad range of chronic conditions, presents several challenges in the identification of a parsimonious set of CDEs. This initial list of recommended CDEs for use in self-management research is provisional in that it is expected that over time it will be refined. Comment and recommended revisions are sought from the research and practice communities. CLINICAL RELEVANCE The use of CDEs can facilitate generalizability of research findings across diverse population and interventions.