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High-dose interleukin-2 is a therapy available for individuals with renal cell carcinoma; however, it can produce adverse effects, specifically depressive symptoms. There is limited information regarding the trajectory of depressive symptoms and measurement-based care assessment of depressive symptoms.The purpose was to describe the trajectory of depressive symptoms and compare 2 depression measures.A descriptive, mixed-method case study approach was used to describe the longitudinal trajectory of depressive symptoms The qualitative assessment included a journal entry and an interview. The quantitative depression symptom severity measures included the 8-item self-report Patient-Reported Outcomes Measurement Information System Depression and the 30-item Inventory of Depressive Symptomatology-Clinician Rated (IDS-C).Ten cases were enrolled. The maximum number of interleukin-2 doses that any patient received within a single hospitalization ranged from 4 to 12. Mean scores on the 8-item Patient-Reported Outcomes Measurement Information System Depression showed no changes in depressive symptoms from pretreatment to posttreatment, nor across hospitalizations. Mean total scores on the IDS-C increased from "normal" to "mild severity" depressive symptom range across all treatment cycles, suggesting transient depressive symptoms within hospitalizations. Qualitative data from the case supported the IDS-C increase, suggesting that the patient developed depressive symptoms pretreatment to posttreatment.Understanding the trajectory of depressive symptoms allows for the identification of critical time points when depressive symptoms present and change across treatment. It is critical to use measurement-based care using validated measures to assess for the presence and changes in depressive symptoms.Validated self-report or clinician-rated depression symptom measures should be used to document the presence or absence of depressive symptoms in this population.

The authors describe a family’s adaptive challenges and adaptive work during a family member’s treatment for Chronic Hepatitis C. We audiorecorded index and final clinical visits and interviewed participants (patients and providers) following the visits. We interviewed by telephone and reviewed medical records over the course of treatment. Transcripts were analyzed using directed content analysis. Three themes were identified: family adaptive challenges, patient-described aspects of family members’ adaptive challenges, and family adaptive work. There were four subthemes related to family adaptive work. The adaptive leadership framework for chronic illness provided direction for future family intervention.

Women living with HIV have a higher burden of non-AIDS comorbidities and prevalence of chronic conditions. The Adaptive Leadership Framework for Chronic Illness clarifies living with complex health challenges by delineating the technical work of health care providers as well as the adaptive work and leadership behaviors of patients and their providers. We conducted a descriptive, qualitative study of women residing in the Southern United States who were participating in the Women's Interagency HIV Study in North Carolina. Twenty-two participants (mean age = 52.2 years; 90.9% self-identifying as Black or African American) completed semi-structured qualitative interviews. We identified adaptive challenges (e.g., affective and disclosure challenges) and adaptive work and leadership behaviors. Women learned skills to care for their health and support their families and to work with their providers to manage their care. Findings support the importance of identifying leadership behaviors for the purpose of developing person-centered interventions.

Patients with gastrointestinal cancers experience diurnal variations in fatigue severity during chemotherapy that decrease their functional status and quality of life.Study purposes were to identify subgroups of patients with distinct co-occurring morning and evening fatigue profiles and evaluate for differences among these subgroups in demographic, clinical, stress, and symptom characteristics.Patients with gastrointestinal cancers (n = 405) completed questionnaires 6 times over 2 cycles of chemotherapy. The Lee Fatigue Scale was used to evaluate diurnal variations in fatigue severity. Latent profile analysis was used to identify subgroups of patients with distinct co-occurring morning AND evening fatigue profiles. Differences among the subgroups in demographic, clinical, stress, and symptom characteristics at enrollment were evaluated using parametric and nonparametric analyses.Two classes were identified, namely: low morning and moderate evening fatigue (ie, Low-Moderate, 60.0%) and high morning and high evening fatigue (ie, Both High, 40.0%). Compared with the Low-Moderate class, the Both High class was significantly younger, female, unmarried, and unemployed and lacked regular exercise. In addition, they had childcare responsibilities, lower annual income, lower functional status, higher comorbidity burden, and self-reported anemia and depression. Patients in the Both High class reported higher levels of anxiety, depressive symptoms, sleep disturbance, pain, and stress, and lower levels of energy and cognitive function.Findings provide new insights into the risk factors for higher levels of co-occurring morning and evening fatigue in patients with gastrointestinal cancers.Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Background and Objectives Social networks affect the health and well-being of older adults. Advancements in technology (e.g., digital devices and mHealth) enrich our ability to collect social networks and health data. The purpose of this scoping review was to identify and map the use of technology in measuring older adults’ social networks for health and social care. Research Design and Methods The Joanna Briggs Institute methodology was followed. PubMed (MEDLINE), Sociological Abstracts, SocINDEX, CINAHL, and Web of Science were searched for relevant articles. Conference abstracts and proceedings were searched via Conference Papers Index, the American Sociological Society, and The Gerontological Society of America. Studies published in English from January 2004 to March 2020 that aimed to improve health or social care for older adults and used technology to measure social networks were included. Data were extracted by 2 independent reviewers using an a priori extraction tool. Results The majority of the 18 reviewed studies were pilot or simulation research conducted in Europe that focused on older adults living in the community. The various types of technologies used can be categorized as environment-based, person-based, and data-based. Discussion and Implications Technology facilitates objective and longitudinal data collection on the social interactions and activities of older adults. The use of technology to measure older adults’ social networks, however, is primarily in an exploratory phase. Multidisciplinary collaborations are needed to overcome operational, analytical, and implementation challenges. Future studies should leverage technologies for addressing social isolation and care for older adults, especially during the coronavirus disease 2019 pandemic.

Systemic sclerosis is a rare and incurable autoimmune disease in which patients are challenged with self-managing their disease. Systematic evaluation of the essential self-management intervention components and self-management outcomes is necessary to assess the state of the science of self-management for patients with systemic sclerosis. As such, the purpose of this systematic review was to identify and describe self-management interventions and their impact on self-management outcomes in adults with systemic sclerosis. Studies were included if they contained a self-management intervention, incorporated at least one self-management outcome identified as a common data element by the National Institute of Nursing Research (i.e., patient activation, self-efficacy, self-regulation, global health), and were conducted in adults with systemic sclerosis. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines, PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Embase were searched from the inception of each database to March 2020, yielding a total of 215 studies. Of these reports, sixteen met the inclusion criteria for this review. There was notable variability in the types of self-management interventions and their effects on key self-management outcomes. Self-management interventions focused on improving physical function through rehabilitation programs were the most common interventions (n = 7). The poor methodological quality of the studies included in this systematic review, however, limited the synthesis of and recommendations for self-management interventions in adults with systemic sclerosis. Future research in systemic sclerosis should include key self-management outcomes in larger, more rigorously designed studies to allow for comparisons across studies and to advance the science of self-management.

Identify subgroups of gastrointestinal (GI) cancer patients with distinct multiple co-occurring symptom profiles and evaluate for differences among these subgroups in demographic and clinical characteristics and quality of life (QOL) outcomes. Patients with GI cancers (n = 399) completed the Memorial Symptom Assessment Scale (MSAS) that was used to assess for multiple co-occurring symptoms. Latent class analysis (LCA) was used to identify subgroups of patients with distinct symptom profiles using symptom occurrence ratings. Differences in demographic and clinical characteristics and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. All Low (36.6%), Moderate (49.4%), and All High (14.0%) classes were identified. Compared to the All Low class, patients in the other two classes were significantly younger and were more likely to report depression and back pain. Compared to the other two classes, patients in the All High class had fewer years of education and a higher number of comorbidities. Significant differences were found among the three classes for comorbidity burden and total number of MSAS symptoms (i.e., All Low Moderate > All High). A higher symptom burden was associated with poorer QOL outcomes. The first study to identify subgroups of patients with GI cancers based on distinct symptom profiles. LCA allowed for the identification of risk factors associated with a higher symptom burden. Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Black women living with HIV (WLWH) face individual and sociostructural challenges. Despite these challenges, many exemplify remarkable levels of resilience and coping. Yet, research on resilience and coping in this population is limited. Twenty Black WLWH in the Southern United States completed semi-structured interviews that explored challenges facing WLWH. We identified six themes related to resilience and coping: self-acceptance, disclosure, self-compassion, social support, will to live, and service. Of these, social support was a driving protective element and an essential component to building and sustaining resilience and coping. Women who experienced positive support often expressed a will to live as well as a desire to support other WLWH. Resilience and social support were characterized by patterns of reciprocity, in that they were mutually sustaining, stabilizing, and strengthening.

This article provides an overview of the process, development, and evaluation of the Symptom Science Colloquium sponsored by the National Institute of Nursing Research, Oncology Nursing Society (ONS), and National Cancer Institute. This colloquium was the first of its kind to leverage the common goals of these institutes to advance oncology symptom science. Specifically, this article will identify the goals of the agencies involved and synergy in forming this collaboration, review the ONS Research Agenda that provided the blueprint for the colloquium, and offer insights and lessons learned to be used for future planning. The colloquium engaged roughly 500 participants from all levels of clinical (RNs, advanced practice nurses), educational (undergraduate, master's, doctorate), and research (students, faculty, scientists) expertise. Six featured expert speakers and 115 poster presentations focused on the latest research in symptom science, cancer survivorship, palliative and end-of-life care, and hot topics (COVID-19, health disparities). Fourteen networking sessions fostered opportunities to engage with international experts. Special awards emphasized mentee-mentor relationships and exemplary midcareer faculty. Based on this emphasis, the authors provide themes from the successful award applications as exemplars. A summary of participant satisfaction and recommendations for future collaborations to enhance and advance oncology symptom science are provided.

There are an estimated 3 million people living with chronic hepatitis C, yet many have limited access to healthcare and treatment due to a variety of behavioral/lifestyle determinants of health. The aim of this literature review was to examine care models and innovations for people successfully treated from 2011 to 2018. We searched PubMed, PsycINFO, and CINAHL to identify care models for people undergoing treatment of chronic hepatitis C. Ten articles met criteria for inclusion and included multiple types of care models, including nurse initiated (n = 2), telemedicine care (n = 3), group visit (n = 1), concurrent treatment (n = 1), community health center care (n = 1), and integrated care (n = 2). Eight of the studies focused on people with mental health challenges and/or substance use disorder. Sustained virological response was the primary outcome of all studies; adherence was a secondary outcome measured in 8 studies.This search occurred during a period where treatment moved from interferon-based therapy to all-oral direct-acting antiviral medications, representing a paradigm shift in treatment of chronic hepatitis C. As new treatments offer cure for up to 95% of patients, these studies provided strong evidence of benefit for innovative care models for patients with mental health and substance use disorder to complete treatment.

Illness uncertainty is prevalent in patients awaiting liver transplant. We described high levels of illness uncertainty in these patients and examined relationships between uncertainty and person factors and the antecedents of uncertainty. Mishel uncertainty in illness scale was used to measure illness uncertainty. We used modes and interquartile range (IQR) to describe illness uncertainty levels in 115 patients. Multiple logistic and linear regression models estimated the associations of uncertainty with hypothesized antecedents. High total illness uncertainty score was reported by 15.6% of the patients. After adjusting for all variables, illness uncertainty was associated with two antecedents of uncertainty, low social well-being (OR = 0.816; p = .025) and low self-efficacy (OR = 0.931; p = .013). Complexity was negatively associated with social well-being; ambiguity and inconsistency were negatively associated with self-efficacy. One in seven patients experienced high illness uncertainty. Social well-being and self-efficacy were negatively related to illness uncertainty.

Problem identification Patients with gastric cancer experience multiple disease- and treatment-related symptoms. The purpose of this review was to describe the common and co-occurring symptoms experienced by patients with gastric cancer. Literature search Search terms, such as gastric cancer, symptoms, and experience, were used to search PubMed®, CINAHL®, and PsycINFO® for empirical papers published from January 1990 to July 2019. Data evaluation The search yielded 1,259 articles; 25 studies (21 observational and 4 interventional) were included in this review. Each study was systematically evaluated. Synthesis The most common symptoms were categorized into physical and affective/cognitive domains. Three to 17 (median = 7) symptoms occurred concurrently. The severity of most symptoms was reported as mild to moderate. However, patients experienced varying levels of symptom severity following treatment trajectories. Older age, female gender, advanced cancer stage, low socioeconomic status, and total gastrectomy were associated with a greater number and severity of symptoms. Implications for practice Future research of symptom clusters may clarify the phenotypes and relationship between multiple co-occurring symptoms in patients with gastric cancer to develop targeted interventions that support symptom self-management for this population.

BACKGROUND Patients with gastrointestinal cancers experience moderate to high levels of sleep disturbance during chemotherapy that decreases their functional status and quality of life (QOL). OBJECTIVE The objectives of this study were to identify subgroups of patients with gastrointestinal cancers with distinct sleep disturbance profiles and evaluate for differences among these subgroups in demographic, clinical, and sleep characteristics, as well as co-occurring symptoms and QOL outcomes. METHODS Patients (n = 405) completed questionnaires 6 times over 2 cycles of chemotherapy. Latent profile analysis was used to identify subgroups of patients with distinct sleep disturbance profiles. RESULTS Three distinct sleep disturbance profiles (ie, low, high, very high) were identified. Compared with the low class, patients in the other 2 classes were significantly younger and less likely to be married and to exercise on a regular basis and received a higher number of previous treatments. Compared with the low class, patients in the other 2 classes reported higher levels of anxiety, depressive symptoms, morning and evening fatigue, and pain and lower levels of attentional function and QOL scores at enrollment. CONCLUSIONS This study is the first to use latent profile analysis to identify subgroups of patients with gastrointestinal cancers with distinct sleep disturbance profiles. Findings provide new insights on the associations between sleep disturbance and multiple co-occurring symptoms in these patients. IMPLICATIONS FOR PRACTICE Clinicians can identify patients who are at the highest risk for sleep disturbance and recommend a variety of sleep hygiene interventions (eg, establishment of a bedtime routine), as well as initiate interventions for other co-occurring symptoms.

Contains fulltext : 237267.pdf (Publisher’s version ) (Closed access) Background: Pain is one of the most common symptoms affecting patients with systemic sclerosis; however, little is known about the relationship between self-efficacy and pain and changes in pain over time. Objectives The purpose of this study was to describe the relationships between self-efficacy and pain in patients with systemic sclerosis, as well as determine whether changes in self-efficacy mediate changes in pain. Methods: A prospective longitudinal study was conducted using data from the Scleroderma Patient-Centered Intervention Network Cohort. The baseline sample included 1,903 adults, with a trajectory subsample of 427 who completed 3-month assessments across 3 years. Hierarchical (sequential) forward multivariable regression, covarying for participant characteristics, was conducted to determine the association between self-efficacy and patient characteristics on pain outcomes. Trajectory models, covarying for participant characteristics, were used to examine changes in self-efficacy and pain outcomes across time and whether self-efficacy mediated the pain trajectories. Results: Mean time since diagnosis was 9.5 years, with 39.2% diagnosed with diffuse cutaneous systemic sclerosis. Greater self-efficacy was associated with less pain interference and intensity. Increasing age, female gender, finger ulcers, and small joint contractures were related to greater pain interference and intensity. Esophageal gastrointestinal symptoms were associated with more pain interference. Self-efficacy and pain trajectories remained stable across time, and self-efficacy did not mediate the pain trajectories. Discussion: This study identified self-efficacy, age, gender, finger ulcers, small joint contractures, and esophageal gastrointestinal symptoms as important correlates associated with pain in patients with systemic sclerosis. In addition, this study found that self-efficacy and pain outcomes remained stable over time, providing important insights into the longitudinal pain experiences of patients with systemic sclerosis. 10 p.

Background Precision health considers individual lifestyle, genetics, behaviors, and environment context and facilitates interventions aimed at helping individuals achieve well-being and optimal health. Purpose To present the Nursing Science Precision Health (NSPH) Model and describe the integration of precision health concepts within the domains of symptom and self-management science as reflected in the National Institute of Nursing Research P30 Centers of Excellence and P20 Exploratory Centers. Methods Center members developed the NSPH Model and the manuscript based on presentations and discussions at the annual NINR Center Directors Meeting and in follow-up telephone meetings. Discussion The NSPH Model comprises four precision components (measurement; characterization of phenotype including lifestyle and environment; characterization of genotype and other biomarkers; and intervention target discovery, design, and delivery) that are underpinned by an information and data science infrastructure. Conclusion Nurse scientist leadership is necessary to realize the vision of precision health as reflected in the NSPH Model.

PURPOSE: Survival improvements in multiple myeloma (MM) over the past fifteen years have been fueled by the introduction of new therapies and changes in treatment patterns. The purpose of this study was to explore the ways MM impacts a person’s life in the modern treatment era. PARTICIPANTS AND SETTING: Fifteen individuals with MM and ten clinicians were recruited from two academic medical centers in the Southeastern United States. METHODOLOGIC APPROACH: Semi-structured interviews were conducted with people with MM and clinicians to explore the impact of MM diagnosis and treatment on peoples’ lives. Transcribed interviews were analyzed using conventional content analysis. FINDINGS: Four themes emerged from our analysis: (1) Treatment without end (2) Social impacts and isolation (3) Ongoing financial pressure and (4) Relationship impacts. IMPLICATIONS FOR NURSING: The treatment journey for those with MM can be life-long, require frequent visits to the oncologist and potentially many successive lines of therapy. Life impacts are far reaching and long term. Nurses should be aware of the multidisciplinary resources to help meet these needs. With thorough assessment, care planning and education nurses can play a key role in mitigating the negative effects of MM and its treatment

Identify subgroups of gastrointestinal (GI) cancer patients with distinct multiple co-occurring symptom profiles and evaluate for differences among these subgroups in demographic and clinical characteristics and quality of life (QOL) outcomes.Patients with GI cancers (n = 399) completed the Memorial Symptom Assessment Scale (MSAS) that was used to assess for multiple co-occurring symptoms. Latent class analysis (LCA) was used to identify subgroups of patients with distinct symptom profiles using symptom occurrence ratings. Differences in demographic and clinical characteristics and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests.All Low (36.6%), Moderate (49.4%), and All High (14.0%) classes were identified. Compared to the All Low class, patients in the other two classes were significantly younger and were more likely to report depression and back pain. Compared to the other two classes, patients in the All High class had fewer years of education and a higher number of comorbidities. Significant differences were found among the three classes for comorbidity burden and total number of MSAS symptoms (i.e., All LowModerateAll High), as well as for performance status (i.e., All LowModerateAll High). A higher symptom burden was associated with poorer QOL outcomes.The first study to identify subgroups of patients with GI cancers based on distinct symptom profiles. LCA allowed for the identification of risk factors associated with a higher symptom burden. Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Precision health considers individual lifestyle, genetics, behaviors, and environment context and facilitates interventions aimed at helping individuals achieve well-being and optimal health. The purposes of this manuscript are to present the Nursing Science Precision Health (NSPH) Model and describe the integration of precision health concepts within the domains of symptom and self-management science as reflected in the National Institute of Nursing Research P30 Centers of Excellence and P20 Exploratory Centers. Center members developed the NSPH Model and the manuscript based on presentations and discussions at the annual NINR Center Directors Meeting and in follow-up telephone meetings. The NSPH Model comprises four precision components (measurement; characterization of phenotype including lifestyle and environment; characterization of genotype and other biomarkers; and intervention target discovery, design, and delivery) that are underpinned by an information and data science infrastructure. Nurse scientist leadership is necessary to realize the vision of precision health.

Background Chronic diseases, such as opioid use disorder (OUD) require a multifaceted scientific approach to address their evolving complexity. The Council for the Advancement of Nursing Science's (Council) four nursing science priority areas (precision health; global health, determinants of health, and big data/data analytics) were established to provide a framework to address current complex health problems. Purpose To examine OUD research through the nursing science priority areas and evaluate the appropriateness of the priority areas as a framework for research on complex health conditions. Method OUD was used as an exemplar to explore the relevance of the nursing science priorities for future research. Findings Research in the four priority areas is advancing knowledge in OUD identification, prevention, and treatment. Intersection of OUD research population focus and methodological approach was identified among the priority areas. Discussion The Council priorities provide a relevant framework for nurse scientists to address complex health problems like OUD.

Assuring home care staff competencies through simulation has the potential to improve care transitions and clinical outcomes. Recreating a home environment can be used for orientation of home care staff and to meet other learning needs. Lessons learned from the use of simulation in a geriatric nursing course in a prelicensure program can be used to prepare clinicians for transitioning patients across care settings. With simulation, learners can identify challenges in patient safety, pain management, and management of patients’ cognitive decline as well as learn how to communication with patients, family members and the healthcare team. Simulation, as an interactive pedagogy, provides opportunities for learners to practice assessment, monitoring, and patient care in a controlled, safe, risk-free environment. Following participation in a simulation, learners are given the opportunity to reflect on ways to improve patient care when transitioning from acute to home care settings. Simulations described in this article can be used for orientation of staff to a home health care agency because they allow clinicians to hone the skills necessary for patient care in the home. Staff educators can also use simulation to validate staff competencies in caring for patients at home.

PURPOSE Biomarkers 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 "minimum set" of biomarkers for consideration as CDEs in symptom and self-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 METHODS From 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 self-management science are described. Current platforms for sample outcome sharing are presented. Finally, biological CDEs for symptom and self-management science are proposed along with implications for future research and use of CDEs in these areas. FINDINGS The recommended minimum set of biomarker CDEs include pro- and anti-inflammatory cytokines, a hypothalamic-pituitary-adrenal axis marker, cortisol, the neuropeptide brain-derived neurotrophic factor, and DNA polymorphisms. CONCLUSIONS It is anticipated that this minimum set of biomarker CDEs will be refined as knowledge regarding biologic mechanisms underlying symptom and self-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 self-management of chronic conditions, biological CDEs offer the potential for collaborative efforts that will strengthen symptom and self-management science. CLINICAL RELEVANCE The use of biomarker CDEs in biobehavioral symptoms research will facilitate the reproducibility and generalizability of research findings and benefit symptom and self-management science.

BackgroundPurposes were to identify subgroups of patients with gastrointestinal cancers with distinct morning and evening fatigue severity profiles and evaluate for differences among these subgroups in demographic and clinical characteristics, co-occurring symptoms and quality of life (QOL) outcomes.MethodsPatients with gastrointestinal cancers (n=405) completed questionnaires six times over two cycles of chemotherapy. Latent profile analysis was used to identify distinct morning and evening fatigue profiles. Differences in demographic and clinical characteristics, co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests.ResultsTwo distinct mornings (ie, low and very high) and three distinct evenings (ie, low, moderate and very high) fatigue classes were identified. Common risk factors for both morning and evening fatigue included younger age, lower performance status, higher comorbidity burden and self-reported depression. Higher levels of morning fatigue were associated with being unmarried, living alone, being unemployed, having a lower income, lack of regular exercise and a self-reported diagnosis of anaemia. Higher levels of evening fatigue were associated with being women, white and having childcare responsibilities. Patients in the very high morning and evening fatigue classes reported higher levels of anxiety, depressive symptoms, sleep disturbance and pain and lower levels of attentional function and poorer QOL.ConclusionFindings provide new insights into risk factors for and deleterious effects of morning and evening fatigue in patients with gastrointestinal cancers. Clinicians can use this information to identify high-risk patients and develop individualised interventions for morning and evening fatigue and other co-occurring symptoms.

We tested an uncertainty self-management telephone intervention (SMI) with patients awaiting liver transplant and their caregivers.Participants were recruited from four transplant centers and completed questionnaires at baseline, 10, and 12 weeks from baseline (generally two and four weeks after intervention delivery, respectively). Dyads were randomized to either SMI (n=56) or liver disease education (LDE; n=59), both of which involved six weekly telephone sessions. SMI participants were taught coping skills and uncertainty management strategies while LDE participants learned about liver function and how to stay healthy. Outcomes included illness uncertainty, uncertainty management, depression, anxiety, self-efficacy, and quality of life. General linear models were used to test for group differences.No differences were found between the SMI and LDE groups for study outcomes.This trial offers insight regarding design for future interventions that may allow greater flexibility in length of delivery beyond our study's 12-week timeframe.Our study was designed for the time constraints of today's clinical practice setting. This trial is a beginning point to address the unmet needs of these patients and their caregivers as they wait for transplants that could save their lives.

Purpose The purpose of this article is to describe the outcomes of a collaborative initiative to share data across five schools of nursing in order to evaluate the feasibility of collecting common data elements (CDEs) and developing a common data repository to test hypotheses of interest to nursing scientists. This initiative extended work already completed by the National Institute of Nursing Research CDE Working Group that successfully identified CDEs related to symptoms and self-management, with the goal of supporting more complex, reproducible, and patient-focused research. Design Two exemplars describing the group's efforts are presented. The first highlights a pilot study wherein data sets from various studies by the represented schools were collected retrospectively, and merging of the CDEs was attempted. The second exemplar describes the methods and results of an initiative at one school that utilized a prospective design for the collection and merging of CDEs. Methods Methods for identifying a common symptom to be studied across schools and for collecting the data dictionaries for the related data elements are presented for the first exemplar. The processes for defining and comparing the concepts and acceptable values, and for evaluating the potential to combine and compare the data elements are also described. Presented next are the steps undertaken in the second exemplar to prospectively identify CDEs and establish the data dictionaries. Methods for common measurement and analysis strategies are included. Findings Findings from the first exemplar indicated that without plans in place a priori to ensure the ability to combine and compare data from disparate sources, doing so retrospectively may not be possible, and as a result hypothesis testing across studies may be prohibited. Findings from the second exemplar, however, indicated that a plan developed prospectively to combine and compare data sets is feasible and conducive to merged hypothesis testing. Conclusions Although challenges exist in combining CDEs across studies into a common data repository, a prospective, well-designed protocol for identifying, coding, and comparing CDEs is feasible and supports the development of a common data repository and the testing of important hypotheses to advance nursing science. Clinical relevance Incorporating CDEs across studies will increase sample size and improve data validity, reliability, transparency, and reproducibility, all of which will increase the scientific rigor of the study and the likelihood of impacting clinical practice and patient care.

To analyze the effects of a decision aid on improving patients' and family members' information giving and question asking during consultations for prostate cancer treatment decision-making.This study is a secondary analysis of archived audio-recorded real-time consultation visits with participants from a randomized clinical trial. Participants were randomly assigned into three groups: TD-intervention targeted patient-only; TS-intervention targeted patients and family members; and control-a handout on staying healthy during treatment. We conducted content analysis using a researcher-developed communication coding system. Using SAS 9.3, we conducted Chi-square/Fisher's exact test to examine whether information giving and question asking among patients and family members varied by groups when discussing different content/topics.Compared with those in the TS and control groups, significantly higher percentages of participants in the TD group demonstrated information giving in discussing topics about diagnosis, treatment options, risks and benefits, and preferences; and engaged in question asking when discussing diagnosis, watchful waiting/active surveillance, risks and benefits, and preferences for treatment impacts.Information support and communication skills training for patients were effective in improving communication during treatment decision-making consultations.Providing information about prostate cancer and communication skills training empower patients and their family members.

Problem statement To describe research mentorship strategies needed to strengthen oncology nursing science and ensure that a cadre of nurse scientists are available to carry out the research mission of the Oncology Nursing Society (ONS). Design Multimethod consensus-building approach by content experts of the ONS Research Mentorship Task Force and approval by the ONS Board of Directors was employed. Data sources Expert opinion, surveys, notes from an all-day research mentorship retreat, and literature review were used. Analysis Content analysis was used to synthesize notes from the research mentorship retreat. Findings Various strategies were identified to strengthen the pipeline of oncology nurse scientists and promote development across the career trajectory. Implications for practice Mentorship is essential to advance the growth and impact of oncology nursing science and requires support throughout the career trajectory.

In this article, we sought to understand the adaptive challenges and work faced by men with male factor infertility. Using a prospective qualitative study in private (the United States) and academic (the United Kingdom) urology clinics, we recruited seven American and five British men with primary infertility after their urology consultation for male factor infertility between December 2015 and April 2017. Individual in-depth qualitative interviews were conducted shortly after male factor infertility urology consultation and then two additional interviews at about 3 and 6 months. We found three themes related to adaptive challenges faced during fertility treatment: avoidance (not disclosing, avoided social network), uncertainty (about ability to have a child, fertility-related information, and male factor infertility status), and affective symptoms (sadness, shock, disbelief, denial, about not achieving fatherhood, and poor outcomes). Four themes about adaptive work included focusing on goal (having clear, actionable steps; knowledge received from urologist; exhausted all options; focus on parenthood), support from partner (relationship and communication), support from health care team (provision of emotional support, increased comfort with staff over time, disclosure of knowing others with same condition), and acquired information (understanding issue, support from urologist, seeking information). We concluded that men with male factor infertility face adaptive challenges including avoidance, uncertainty, and affective symptoms. To manage during the treatment process, they use adaptive work including focusing on the goal, receiving support from their partner and health care team, and acquiring information. Although qualitative results cannot be generalized to larger populations, they might be applicable to men with male factor infertility during infertility treatment.

Purpose Patients with gastric cancer experience an increased symptom burden with multiple co-occurring symptoms. Knowledge of patients’ symptom experiences and self-management for these symptoms is limited. The purpose of this study was to describe multiple co-occurring symptoms, symptom experiences, and symptom self-management strategies in patients with gastric cancer. Methods A qualitative descriptive approach was used for this study. Semi-structured interviews were conducted with ten American participants (median age 52.5 years, 50% female, 70% African American). Content analysis was used to explore their symptoms, experiences, and self-management strategies. Results Four themes were identified: perceptions of multiple co-occurring symptoms, complex and dynamic nature of symptom experiences, living with multiple co-occurring symptoms, and symptom self-management strategies (i.e., medications for symptoms, information seeking from the clinician team, lifestyle modification, psychosocial and spiritual support). Conclusions Our findings provide new insights into how patients with gastric cancer perceive and interpret their multiple co-occurring symptoms, contribute to our understanding of the role that inter-individual variability might play in symptom experiences, and highlight a range of self-management strategies for managing multiple co-occurring symptoms. Oncology nurses need to assess symptoms on an ongoing basis, educate patients about multiple co-occurring symptoms, and develop and test person-centered self-management interventions for these patients to enhance their symptom relief and quality of life.

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.

Adolescent depression is a primary cause of global disability and burden with considerable variability across countries in its prevalence, diagnosis, management, and prognosis. No systematic reviews have been published on adolescent depression in Arab countries despite the unique sociocultural background that can play a major role in shaping Arab depressed adolescents' prognosis and response to treatment. The purpose of this study was to provide such a review with the goal of identifying the necessary foundations for culturally competent mental health care practices to address the unique needs of Arab adolescents and their families. We systematically reviewed PubMed, CINAHL, PsycINFO, and available Arabic databases. We adhered to the PRISMA statement to guide the process of identification, selection, and appraisal of the reviewed articles. No restrictions were applied on publication date. The search was completed in December 2015. A total of 199 unique articles met criteria for screening at the abstract level; 47 articles were selected for review in full text; and 27 articles were included in the final analysis. Four emerging themes were identified: (1) few robust prevalence estimates of adolescent depression are available in Arab countries; (2) depression varies based on the individual characteristics of Arab adolescents; (3) context influences Arab adolescents' risk of experiencing depression; and (4) the stigma of depression negatively impacts help-seeking process among Arab adolescents. This review highlights the need for more community-based detection efforts that employ developmentally and culturally appropriate measurement instruments for adolescent depression. Furthermore, findings suggest the need for culturally competent care that integrates indigenous health practices into modern mental health systems. Nurses, who form the greatest proportion of health personnel in all Arab countries, are uniquely situated to help Arab adolescents experiencing depression restore, maintain, and/or promote their mental health and wellbeing.

Multiple myeloma (myeloma), is an incurable cancer of the plasma cells that affects many older adults. Over 30,000 new diagnoses and over 12,000 deaths are attributed to myeloma annually in the United States, where the median age of diagnosis is 69 years old. Dramatic improvements in survival over the past fifteen years have transformed myeloma into a chronic disease for many. The disease and its toxic, ongoing treatment lead to significant challenges for patients. In this study we explore the self-management strategies patients use to address the challenges of living with myeloma through semi-structured one-on-one interviews with myeloma patients and clinicians. Fifteen myeloma patients and ten myeloma clinicians were interviewed between September 2017 and September 2018. Self-management strategies emerged in five major categories; managing uncertainty, finding emotional strength, seeking support, medication management, and activity management. The care of MM patients has made great strides as new and more effective treatments have extended survival for many patients. Effective self-management strategies are critical in addressing the challenges of this increasingly chronic disease. Our study explores the ways myeloma patients address the many challenges they face due to their disease and its’ treatment. Findings from this study could inform the development of interventions to optimize and support patients living with myeloma self-management.

Background Nurse scientists are highly sought after and find satisfaction in serving as members of interdisciplinary research teams. These teams also tend to be highly productive. However, nurse scientists in academia also have to reach certain productivity milestones to be promoted and receive tenure that may be incongruent with team science principles. Purpose This study therefore sought to examine whether APT documents in research intensive nursing schools incorporate team science principles. Methods Qualitatively analyzed the appointment, promotion and tenure documents of 18 U.S. based research intensive schools of nursing with over $2 million in NIH funding in fiscal year 2014. Findings The study found that only 8 of 18 documents included any reference to team science principles and even these mentions were largely negligible. There were few best practices to recommend across documents. By not recognizing team science within these documents, nursing risks marginalization within the larger scientific community by limiting mentorship and learning opportunities for early career nurse scientists. Discussion Schools of nursing should revisit their promotion and tenure criteria and include a greater commitment to encouragement of team science.

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care.

Background Palliative care in intensive care units (ICUs) reduces costs and improves outcomes yet is consistently underused; studies suggest that screening tools increase the use of palliative services. Aims This project piloted the use of the Palliative Performance Scale, version 2 (PPSv2), as a trigger for palliative care referrals in a 12-bed medical ICU. Methods Using a preintervention-postintervention design, the authors measured the effect of the intervention on nurses' comfort and knowledge in assessing palliative care needs, number of palliative care referrals, and number of days between ICU admission and palliative care referral. The authors also measured uptake of the scale over 12 weeks of implementation and asked nurses to share their thoughts about using the PPSv2. Results Over 610 observations, the rate of uptake increased over time and use of the scale ranged from 24.2% to 85.6%. The nurses' (n = 26) comfort with palliative care issues increased from preintervention to postintervention, albeit not significantly. Knowledge items did not change. There was a 110% increase in the number of palliative care referrals between preintervention and postintervention and a nearly 1-day decrease in the number of days between medical ICU admission and palliative care referral; this reduction was not statistically significant. A majority of nurses (n = 22 [84.5%]) voted to retain the PPSv2 as an official process of care, stating that the tool facilitated assessment of patient needs that might have been previously overlooked. Conclusion Data suggest that the PPSv2 was well received by the bedside nurses and changed practice patterns with regard to facilitating palliative care services.

Objectives: To describe the communication behaviors of patients and physicians and patient par-ticipation in communication about treatment decision-making during consultation visits for local-ized prostate cancer (LPCa). Methods: This is a secondary analysis of data from 52 men enrolled in the usual care control group of a randomized trial that focused on decision-making for newly diagnosed men with LPCa. We analyzed the patient-physician communication using the transcribed audio-recordings of real-time treatment consultations and a researcher-developed coding tool, including codes for communication behaviors (information giving, seeking, and clarifying/ verifying) and contents of clinical consultations (health histories, survival/mortality, treatment options, treatment impact, and treatment preferences). After qualitative content analysis, we categorized patient participation in communication about treatment-related clinical content, including “none” (content not discussed); “low” (patient listening only); “moderate” (patient providing information or asking questions); and “high” (patient providing information and asking questions). Results: Physicians mainly provided information during treatment decision consultations and patients frequently were not active participants in communication. The participation of patients with low and moderate cancer risk typically was: 1) “moderate and high” in discussing health histories; 2) “low” in discussing survival/mortality; 3) “low and moderate” in discussing treatment options; 4) “none and low” in discussing treatment impacts; and 5) “low” in discussing treatment preferences. Conclusions: Findings suggest opportunities for increasing patient participation in communication about treatment decision-making for LPCa during clinical consultations.

The purpose of this article is to describe the outcomes of a collaborative initiative to share data across five schools of nursing in order to evaluate the feasibility of collecting common data elements (CDEs) and developing a common data repository to test hypotheses of interest to nursing scientists. This initiative extended work already completed by the National Institute of Nursing Research CDE Working Group that successfully identified CDEs related to symptoms and self-management, with the goal of supporting more complex, reproducible, and patient-focused research.Two exemplars describing the group's efforts are presented. The first highlights a pilot study wherein data sets from various studies by the represented schools were collected retrospectively, and merging of the CDEs was attempted. The second exemplar describes the methods and results of an initiative at one school that utilized a prospective design for the collection and merging of CDEs.Methods for identifying a common symptom to be studied across schools and for collecting the data dictionaries for the related data elements are presented for the first exemplar. The processes for defining and comparing the concepts and acceptable values, and for evaluating the potential to combine and compare the data elements are also described. Presented next are the steps undertaken in the second exemplar to prospectively identify CDEs and establish the data dictionaries. Methods for common measurement and analysis strategies are included.Findings from the first exemplar indicated that without plans in place a priori to ensure the ability to combine and compare data from disparate sources, doing so retrospectively may not be possible, and as a result hypothesis testing across studies may be prohibited. Findings from the second exemplar, however, indicated that a plan developed prospectively to combine and compare data sets is feasible and conducive to merged hypothesis testing.Although challenges exist in combining CDEs across studies into a common data repository, a prospective, well-designed protocol for identifying, coding, and comparing CDEs is feasible and supports the development of a common data repository and the testing of important hypotheses to advance nursing science.Incorporating CDEs across studies will increase sample size and improve data validity, reliability, transparency, and reproducibility, all of which will increase the scientific rigor of the study and the likelihood of impacting clinical practice and patient care.

Objectives To explore how family members of ICU patients at high risk of dying respond to nursing communication strategies. Background Family members of ICU patients may face difficult decisions. Nurses are in a position to provide support. Evidence of specific strategies that nurses use to support decision-making and how family members respond to these strategies is lacking. Methods This is a prospective, qualitative descriptive study involving the family members of ICU patients identified as being at high risk of dying. Results Family members described five nursing approaches: Demonstrating concern, building rapport, demonstrating professionalism, providing factual information, and supporting decision-making. This study provides evidence that when using these approaches, nurses helped family members to cope; to have hope, confidence, and trust; to prepare for and accept impending death; and to make decisions. Conclusion Knowledge lays a foundation for interventions targeting the areas important to family members and most likely to improve their ability to make decisions and their well-being.

Chronic hepatitis C (CHC) is the most common blood-borne infection in the United States. Patients with CHC undergoing treatment face many challenges including adherence to medications and management of symptoms; health care practitioners are well positioned to facilitate patients’ ability to address these challenges. We used the Adaptive Leadership for Chronic Illness Framework to investigate the difficulties inherent in affecting behavior change in patients undergoing treatment. We enrolled 11 patient participants and 10 provider participants. We used data from the first clinical encounter between patients and providers during which treatment was discussed. We found examples of adaptive leadership and categorized these behaviors into three themes: support for medication, coping with family/home life, and strategizing to manage employment. We also saw examples of what we termed missed opportunities for adaptive leadership. This study illustrates the contributions of adaptive leadership behaviors by health care providers and the potential risk to patients in their absence.

Purpose/objectives To examine the trajectory of changes in body composition and metabolic profile in men who receive androgen-deprivation therapy (ADT) for prostate cancer. Design Prospective longitudinal design with repeated measures. Setting Urban medical center in the southwestern United States. Sample 55 men starting radiation therapy for prostate cancer. Methods Changes in the parameters of metabolic syndrome were estimated with ADT (n=31) and non-ADT (n=24) groups by repeated-measures analysis of variance implemented by general linear mixed-effects models. Models included interactions between groups and follow-up time to test differences between the groups. Main research variables Body composition and metabolic variables. Findings The ADT group demonstrated a transient increase in waist circumference at the nine-month time point and significant changes in measures of insulin resistance were noted at the three month point. Values for diastolic and systolic blood pressure, plasma glucose, high-density lipoprotein, and triglycerides were not altered for either group. Differences in metabolic variables or measures of body composition did not differ significantly between the groups. Conclusions The findings demonstrate the development of insulin resistance in men receiving ADT as early as three months after starting ADT. Implications for nursing Addressing survivorship concerns can lead to the development of nursing interventions designed to reduce adverse effects associated with ADT.

Family members of intensive care unit (ICU) patients want to be involved in decision making, but they may not be best served by being placed in the position of having to solve problems for which they lack knowledge and skills. This case report presents an exemplar family meeting in the ICU led by a palliative care specialist, with discussion about the strategies used to improve the capacity of the family to make a decision consistent with the patient's goals. These strategies are presented through the lens of Adaptive Leadership.

PURPOSE/OBJECTIVES: To examine demographic and disease characteristics by age and the moderating effect of age on quality of life (QOL) among non-Hodgkin lymphoma (NHL) survivors. DESIGN: A cross-sectional, secondary analysis study of NHL survivors. SETTING: Two North Carolina cancer registries. SAMPLE: 741 NHL survivors with a mean age of 62 years and a mean time since diagnosis of 10 years. METHODS: Mailed surveys were sent to individuals treated for NHL. All analyses were conducted using SPSS®, version 18.0. Multiple regression was used to analyze relationships among demographic and disease characteristics, age, and QOL. MAIN RESEARCH VARIABLES: Demographic, disease, and clinical characteristics on QOL. FINDINGS: In relation to QOL, income and gender were moderated by age; for example, younger survivors who earned less than $30,000 annually had a poorer QOL. Women reported a higher QOL than men. CONCLUSIONS: Age was a moderator for income and an indicator for how income could affect care of younger survivors. Men reported a lower QOL than women and gender-specific resources may be helpful to them. IMPLICATIONS FOR NURSING: Nursing research should focus on age-sensitive resources targeted for younger NHL survivors. KNOWLEDGE TRANSLATION: Age is an important characteristic that impacts overall health-related QOL. Oncology nurses are instrumental in identifying patients at all ages who could benefit from age-specific resources.

Traditional 4- to 6-week clinic follow-up after pediatric ambulatory surgery does not rapidly identify complications and is often a burden for parents. Telephone follow-up offers support and is preferred in a variety of adult populations, but there is little research in pediatrics to support this practice. This article describes a practice change involving a standardized telephone follow-up protocol by a pediatric nurse practitioner to parents within 1 week of their child's ambulatory surgery. An interview survey method was used to evaluate parent satisfaction with telephone follow-up and desire for a clinic visit. Staff satisfaction and resource utilization are also described.