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

PurposeCommon 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 selfâ management of chronic conditions; (b) propose an initial set of CDEs and their measures to advance the science of selfâ management; and (c) recommend implications for future research and dissemination.Design and MethodsBetween July 2014 and December 2015 the directors of the National Institute of Nursing Research (NINR)â funded P20 and P30 centers of excellence and NINR staff met in a series of telephone calls and a faceâ toâ face NINRâ sponsored meeting to select a set of recommended CDEs to be used in selfâ management research. A list of potential CDEs was developed from examination of common constructs in current selfâ management frameworks, as well as identification of variables frequently used in studies conducted in the centers of excellence.FindingsThe recommended CDEs include measures of three selfâ management processes: activation, selfâ regulation, and selfâ efficacy for managing chronic conditions, and one measure of a selfâ management outcome, global health.ConclusionsThe selfâ 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 selfâ 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 RelevanceThe use of CDEs can facilitate generalizability of research findings across diverse population and interventions.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/134268/1/jnu12233_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/134268/2/jnu12233.pd

Biomarkers as Common Data Elements for Symptom and Selfâ Management Science

PurposeBiomarkers as common data elements (CDEs) are important for the characterization of biobehavioral symptoms given that once a biologic moderator or mediator is identified, biologically based strategies can be investigated for treatment efforts. Just as a symptom inventory reflects a symptom experience, a biomarker is an indicator of the symptom, though not the symptom per se. The purposes of this position paper are to (a) identify a â minimum setâ of biomarkers for consideration as CDEs in symptom and selfâ management science, specifically biochemical biomarkers; (b) evaluate the benefits and limitations of such a limited array of biomarkers with implications for symptom science; (c) propose a strategy for the collection of the endorsed minimum set of biologic samples to be employed as CDEs for symptom science; and (d) conceptualize this minimum set of biomarkers consistent with National Institute of Nursing Research (NINR) symptoms of fatigue, depression, cognition, pain, and sleep disturbance.Design and MethodsFrom May 2016 through January 2017, a working group consisting of a subset of the Directors of the NINR Centers of Excellence funded by P20 or P30 mechanisms and NINR staff met bimonthly via telephone to develop this position paper suggesting the addition of biomarkers as CDEs. The full group of Directors reviewed drafts, provided critiques and suggestions, recommended the minimum set of biomarkers, and approved the completed document. Best practices for selecting, identifying, and using biological CDEs as well as challenges to the use of biological CDEs for symptom and selfâ management science are described. Current platforms for sample outcome sharing are presented. Finally, biological CDEs for symptom and selfâ management science are proposed along with implications for future research and use of CDEs in these areas.FindingsThe recommended minimum set of biomarker CDEs include proâ and antiâ inflammatory cytokines, a hypothalamicâ pituitaryâ adrenal axis marker, cortisol, the neuropeptide brainâ derived neurotrophic factor, and DNA polymorphisms.ConclusionsIt is anticipated that this minimum set of biomarker CDEs will be refined as knowledge regarding biologic mechanisms underlying symptom and selfâ management science further develop. The incorporation of biological CDEs may provide insights into mechanisms of symptoms, effectiveness of proposed interventions, and applicability of chosen theoretical frameworks. Similarly, as for the previously suggested NINR CDEs for behavioral symptoms and selfâ management of chronic conditions, biological CDEs offer the potential for collaborative efforts that will strengthen symptom and selfâ management science.Clinical RelevanceThe use of biomarker CDEs in biobehavioral symptoms research will facilitate the reproducibility and generalizability of research findings and benefit symptom and selfâ management science.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/143764/1/jnu12378.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/143764/2/jnu12378_am.pd

The Use of Technology to Support Precision Health in Nursing Science

PurposeThis article outlines how current nursing research can utilize technology to advance symptom and self‐management science for precision health and provides a roadmap for the development and use of technologies designed for this purpose.ApproachAt the 2018 annual conference of the National Institute of Nursing Research (NINR) Research Centers, nursing and interdisciplinary scientists discussed the use of technology to support precision health in nursing research projects and programs of study. Key themes derived from the presentations and discussion were summarized to create a proposed roadmap for advancement of technologies to support health and well‐being.ConclusionsTechnology to support precision health must be centered on the user and designed to be desirable, feasible, and viable. The proposed roadmap is composed of five iterative steps for the development, testing, and implementation of technology‐based/enhanced self‐management interventions. These steps are (a) contextual inquiry, focused on the relationships among humans, and the tools and equipment used in day‐to‐day life; (b) value specification, translating end‐user values into end‐user requirements; (c) design, verifying that the technology/device can be created and developing the prototype(s); (d) operationalization, testing the intervention in a real‐world setting; and (e) summative evaluation, collecting and analyzing viability metrics, including process data, to evaluate whether the technology and the intervention have the desired effect.Clinical RelevanceInterventions using technology are increasingly popular in precision health. Use of a standard multistep process for the development and testing of technology is essential.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/151985/1/jnu12518.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/151985/2/jnu12518_am.pd

Using item response theory to develop and refine patient-reported outcome measures

There is a long tradition of incorporating patient-reported outcomes (PROs) into nursing research and practice. Classical Test Theory (CTT) has been the traditional approach used to develop and refine PROs. Item response theory (IRT) offers promise for addressing measurement problems that have been difficult to solve using CTT. This paper presents foundational concepts in IRT to illustrate how it can be used to improve the development and refinement of PRO measures, with emphasis on interpreting key IRT parameters

Preference for Patient–provider Ethnic Concordance in Asian Americans

Objectives: The present study examined factors associated with the preference for patient–provider ethnic concordance in Asian Americans. Design: With data drawn from the 2015 Asian American Quality of Life Survey (N = 2535), a logistic regression model of the preference for patient–provider ethnic concordance was tested with demographic (age, gender, ethnicity, marital status, education), health and access (chronic medical conditions, self-rated health, health insurance coverage), immigration-related (place of birth, length of stay in the US, English proficiency, acculturation), and adverse experience (perceived discrimination, communication problems in healthcare settings) variables. Results: Over half (52.4%) of those in the sample preferred to be treated by a healthcare provider from their own ethnic background. In a multivariate model, the odds for preferring ethnic concordance were 1.52–1.64 times higher among individuals in earlier stages of immigration, language acquisition, and acculturation. Individuals who had experienced communication problems in healthcare settings presented 3.74 times higher odds for preferring ethnic concordance than did counterparts without such experience. Conclusions: The results emphasized the value of paying attention to patient–provider concordance when treating Asian Americans either relatively new to the country or who have had previous problems communicating with health professionals. The findings also provide implications for improving workforce diversity in healthcare delivery and medical education

EFFECTS OF STRESSFUL LIFE EVENTS IN YOUNG BLACK MEN WITH HIGH BLOOD PRESSURE

Objectives: 1) To describe stressful life events as experienced by a sample of young Black men with high blood pressure (HBP) living in inner-city Baltimore, Maryland; and 2) to examine the effect of cumulative stressful life events on substance use, depression, and quality of life. Methods: Data were obtained over 48 months by interview from 210 men in an HBP management study. Results: Stressors repeatedly occurring over time included death of family member or close friend (65.2%), having a new family member (32.9%), change in residence (31.4%), difficulty finding a job (24.3%), and fired or laid off from work (17.6%). Involvement with crime or legal matters was reported at least twice during the 48 months by 33.3% of men. When a cumulative stressful life events score was calculated by summing the number of events experienced at 6-month points over 48 months and tested for its relationship with the health outcomes, the findings of multivariate analyses revealed significant associations between cumulative life stressors and depression and quality of life. No significant relationship was found between stressful life events and substance use. Conclusions: The results suggest that cumulative stressful life events have a negative effect on mental health and quality of life in young Black men with HBP. Future study should focus on developing interventions to assist individuals in managing distress related to stressful events with necessary community resources

Factors Associated with Dental Service Use of Older Korean Americans

Objectives: Based on Andersen\u27s healthcare utilization model, the present study examined factors associated with dental service use in older Korean Americans. Focus was on predisposing characteristics (age, gender, marital status, education and region), oral health needs (problems with teeth or gums and self-rated oral health) and enabling factors (dental health insurance, length of stay in the United States, acculturation and family network). Methods: Using data from surveys with Korean Americans aged 60 or older (N = 2128), a Poisson regression model examined predictors of dental visit in the past 12 months. Findings: More than 21% of the sample reported having a problem with teeth or gums, and over half rated their oral health as either fair or poor. Approximately 71% lacked dental health insurance. The number of dental visits in the past 12 months averaged 1.40 (SD = 1.74), with about 38% having no dental visits at all. Multivariate analyses showed that higher levels of education, the presence of a problem with teeth or gums, dental health insurance coverage, longer length of stay in the United States, and larger family networks were associated with 1.01-1.35 times higher number of dental visits. Conclusion: The findings not only confirmed the critical role of dental health insurance as a service enabler but also highlighted the importance of considering older ethnic immigrants’ oral health and dental care from the perspectives of culture and family