A Hybrid Pragmatic and Factorial Cluster Randomized Controlled Trial for an Anti-racist, Multilevel Intervention to Improve Mental Health Equity in High Schools.

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

Care partners experience of an oral health intervention for individuals with mild cognitive impairment and mild dementia using behavior change technique: A qualitative study.

Oral health declines in older adults with cognitive impairment. We aimed to improve oral hygiene outcomes for individuals with mild cognitive impairment (MCI) or mild dementia (MD) by fostering behavior changes among carepartners assisting them. We used qualitative data of verbatim transcripts of coaching sessions with carepartners (n = 17 dyads:10 dyads for MCI, 7 dyads for MD). Directed and emergent coding were used to understand behavior change techniques (BCTs). BCTs were compared with carepartners of participants with MCI and MD. Most frequently used BCTs in both groups: prompts and cues, instruction on how to perform the behavior, review behavioral goal, and problem solving. Different BCTs emerged in study: social support-unspecified of the MCI group and credible source for MD group. Findings clarified active intervention components, common BCTs used by carepartners, and different BCT approaches for both participants. Findings help to elucidate the mechanisms of changes in individuals' behaviors in these interventions.

Adaptive leadership in clinical encounters with women living with HIV.

BACKGROUND: Women living with HIV (WLWH) report low engagement in health care, missed office visits, and less engagement in the clinical encounter. Strengthening the clinical encounter for WLWH may improve health outcomes and quality of life. The Adaptive Leadership Framework for Chronic Illness offers specific adaptive leadership strategies for providers to improve patient-provider interactions. The purpose of this study was to examine adaptive leadership behaviors that contribute to the development of effective patient-provider communication from the perspectives of WLWH. METHODS: The descriptive, cross-sectional and qualitative study conducted interviews with 22 WLWH to assess perceptions of the clinical encounter related to HIV-related stigma, engagement in care, medical distrust, and experiences with discrimination and quality of life. Members of the study team using a set of a priori codes analyzed data using NVivo 12.0. RESULTS: Participants described two primary themes and subthemes of each for adaptive leadership behaviors. The primary theme for adaptive leadership of providers was "my provider cares about me"; subthemes were communication, trust building takes time, and supportive providers are trusted. The primary theme for adaptive leadership of WLWH themselves was "I care about me; subthemes were self-advocacy and self-empowerment. CONCLUSIONS: Providers can use adaptive leadership behaviors during clinical encounters to support WLWH, improve patient-provider communication, enhance trust, and improve patient outcomes.

Distinct profiles of multiple co-occurring symptoms in patients with gastrointestinal cancers receiving chemotherapy.

PURPOSE: 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. METHODS: 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. RESULTS: 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), as well as for performance status (i.e., All Low > Moderate > All High). A higher symptom burden was associated with poorer QOL outcomes. CONCLUSIONS: 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.

Pain and Self-Efficacy Among Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.

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.

Self-management interventions in systemic sclerosis: A systematic review.

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 guidelines, PubMed, Cumulative Index of Nursing and Allied Health Literature, and Embase were searched from the inception of each database to March 2020, yielding a total of 215 studies. Of these reports, 16 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.

Supportive Interventions During Treatment of Chronic Hepatitis C: A Review of the Literature.

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.

Best practices and inclusion of team science principles in appointment promotion and tenure documents in research intensive schools of nursing.

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.

Biomarkers as Common Data Elements for Symptom and Self-Management Science.

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.

Feasibility of Combining Common Data Elements Across Studies to Test a Hypothesis.

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.

Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being.

PURPOSE: We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized cancer patients. METHODS: We recruited adult patients in oncology units and their informal caregivers. We utilized a two-armed, randomized controlled trial design with data collected at baseline, post-training, and at 2 and 4 weeks after hospital discharge. Primary outcomes were self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving. Secondary outcomes were caregiver depression, anxiety, and burden. The education comparison (EDUC) group received information about community resources. We used general linear models to test for differences in the Enhanced-CT relative to the EDUC group. RESULTS: We consented and randomized 138 dyads: Enhanced-CT = 68 and EDUC = 70. The Enhanced-CT group had a greater increase in caregiver self-efficacy for cancer symptom management and stress management and preparation for caregiving at the post-training assessment compared to the EDUC group but not at 2- and 4-week post-discharge assessments. There were no intervention group differences in depression, anxiety, and burden. CONCLUSION: An Enhanced-CT protocol resulted in short-term improvements in self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving but not in caregivers' psychological well-being. The lack of sustained effects may be related to the single-dose nature of our intervention and the changing needs of informal caregivers after hospital discharge.

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.

Evaluation of a peer mentoring program for early career gerontological nursing faculty and its potential for application to other fields in nursing and health sciences.

BACKGROUND: As the retirement rate of senior nursing faculty increases, the need to implement new models for providing mentorship to early career academics will become key to developing and maintaining an experienced faculty. PURPOSE: This evaluation of a peer mentorship program for predoctoral and postdoctoral gerontological nurses examined its efficacy, utility, and potential for improvement. METHODS: A web-based survey was developed, implemented, and completed by 22 mentees and 17 mentors (71% and 61% response rates, respectively) as part of the evaluation. DISCUSSION: The peer mentorship program was found to be valuable by both mentors (64.7%) and mentees (72.7%) in helping mentees further develop their careers and networks and providing mentors with supported mentorship experience. CONCLUSION: The peer mentorship program could serve as a model for other professional organizations, academic institutions, and consortiums to enhance and extend the formal vertical mentorship provided to early academic career individuals.

Adolescent Depression in the Arab Region: A Systematic Literature Review.

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.

An exploratory path model of the relationships between positive and negative adaptation to cancer on quality of life among non-Hodgkin lymphoma survivors.

Adaptation is an ongoing, cognitive process with continuous appraisal of the cancer experience by the survivor. This exploratory study tested a path model examining the personal (demographic, disease, and psychosocial) characteristics associated with quality of life (QOL) and whether or not adaptation to living with cancer may mediate these effects. This study employed path analysis to estimate adaptation to cancer. A cross-sectional sample of NHL survivors (N = 750) was used to test the model. Eligible participants were ≥ 18 years, at least 2 years post-diagnosis, and living with or without active disease. Sixty-eight percent of the variance was accounted for in QOL. The strongest effect (-0.596) was direct by negative adaptation, approximately 3 times that of positive adaptation (0.193). The strongest demographic total effects on QOL were age and social support; <65 years of age had better QOL and better adaptation compared to those ≥ 65. Of the disease characteristics, comorbidity score had the strongest direct effect on QOL; each additional comorbidity was associated with a 0.309 standard deviation decline on QOL. There were no fully mediated effects through positive adaptation alone. Our exploratory findings support the coexistence of positive and negative adaptations perception as mediators of personal characteristics of the cancer experience. Negative adaptation can affect QOL in a positive way. Cancer survivorship is simultaneously shaped by both positive and negative adaptation with future research and implications for practice aimed at improving QOL.

The "invisible caregiver": multicaregiving among diabetic African-American grandmothers.

PURPOSE: To explore the multicaregiving roles African-American grandmothers assume while self-managing their diabetes. DESIGN & METHODS: This longitudinal, qualitative pilot study explored the challenges of self-managing diabetes among six African-American caregiving grandmothers. Data were collected at 5 times points across 18 months. Content analysis, guided by the Adaptive Leadership framework, was conducted using data matrices to facilitate within-case and cross-case analyses. RESULTS: Although participants initially stated they cared only for grandchildren, all had additional caregiving responsibilities. Four themes emerged which illustrated how African-American caregiving grandmothers put the care of dependent children, extended family and community before themselves. Using the Adaptive Leadership framework, technical and adaptive challenges arising from multicaregiving were described as barriers to diabetes self-management. IMPLICATIONS: When assisting these women to self-manage their diabetes, clinicians must assess challenges arising from multicaregiving. This might require developing collaborative work relationships with the client to develop meaningful and attainable goals.

Distinct Co-occurring Morning and Evening Fatigue Profiles in Patients With Gastrointestinal Cancers Receiving Chemotherapy.

BACKGROUND: Patients with gastrointestinal cancers experience diurnal variations in fatigue severity during chemotherapy that decrease their functional status and quality of life. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Findings provide new insights into the risk factors for higher levels of co-occurring morning and evening fatigue in patients with gastrointestinal cancers. IMPLICATIONS FOR PRACTICE: Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Uncertainty and perception of danger among patients undergoing treatment for prostate cancer.

UNLABELLED: Study Type - Therapy (attitude prevalence) Level of Evidence 2a What's known on the subject? and What does the study add? Marked differences in uncertainty among patients have been found relating to race and social environment indicating that as uncertainty increases, social functioning declines. Correlations have been found between uncertainty and patients' coping, psychological adjustment and perceptions of their health and illness. Studies suggest the detrimental effect of uncertainty among patients with prostate cancer in the perception of their quality of life. These studies underline the potential benefit of targeted intervention. The study provides a unique insight into the impact of uncertainty and perception of danger on overall satisfaction with treatment outcomes in men with prostate cancer. Its results suggest that possible disparities related to patient racial background and education may exist in the perception of cancer-related uncertainty. Racial and educational disparities, coupled with a mild to moderate association of uncertainty or danger perception and overall outcome satisfaction, suggest an unmet need for healthcare and nursing services for men undergoing treatment for prostate cancer. OBJECTIVES: To investigate patient uncertainty and perception of danger regarding prospects for clinical prostate cancer control. To determine the impact of these factors on satisfaction with overall prostate cancer treatment outcome. PATIENTS AND METHODS: Men who had undergone primary treatment for early stage prostate cancer and who were participants in the Prostate Cancer Outcomes and Satisfaction with Treatment Quality Assessment (PROSTQA) prospective cohort study of prostate cancer outcomes (the parent study) were offered the opportunity to participate in the present study. Centralized phone interviews were conducted to determine patient-reported uncertainty regarding cancer status (measured by the Mishel Uncertainty in Illness Scale-Community Form), perception of danger (measured by Folkman and Lazarus' Appraisal Scale) and satisfaction with treatment outcome (measured by the Service Satisfaction Scale for Cancer Care). The study used the same centralized telephone interview centre as was used in the parent study. Data were collected at 48, 60 or 72 months after the completion of prostate cancer treatment. Relationships among measures were characterized by Spearman rank correlation coefficients (r). RESULTS: A total of 338 agreed to participate, representing 76% of those who were invited. Younger patients experienced less uncertainty (r = 0.20, P < 0.001), yet reported greater perception of danger (r = -0.12; P = 0.03) concerning their previously treated prostate cancer. African-American patients showed greater uncertainty than other ethnic groups (P = 0.005) but did not have a greater perception of danger (P = 0.36). Education played a major role in uncertainty; patients with lower levels of education tended to report higher degrees of uncertainty (r = -0.25; P < 0.001). There was a mild to moderate general association between the three outcomes. A greater sense of uncertainty was associated with a greater perception of danger (r = 0.34, P < 0.001), and as danger and uncertainty increased, satisfaction with treatment outcome tended to decrease (r was between -0.30 and -0.34, P < 0.001). CONCLUSIONS: Results suggest that possible disparities related to patient racial background and education may exist in the perception of cancer-related uncertainty. Racial and educational disparities, coupled with a mild to moderate association of uncertainty or danger perception and overall outcome satisfaction, suggest an unmet need for healthcare and nursing services for men undergoing treatment for prostate cancer.

Psychosocial aspects of active surveillance.

PURPOSE OF REVIEW: To summarize the literature on psychosocial responses to active surveillance as well as educational and support strategies to promote adherence. RECENT FINDINGS: There are two prevalent responses among men undergoing active surveillance; anxiety and uncertainty. The education of a patient about low-risk prostate cancer as well as the inquiry by the physician into patient's priorities and goals with respect to their prostate cancer diagnosis provide opportunities to facilitate a collaborative relationship between the physician and the patient. Supplemental support services for men undergoing active surveillance, including support groups and Internet-based interventions continue to be researched in relation to their role in promoting adherence to active surveillance. SUMMARY: Active surveillance continues to remain a highly valued management approach for men with early stage prostate cancer. However, it is suggested that the psychosocial burden of living with prostate cancer plays a substantial role in adherence to active surveillance and outcomes of men with the disease. Effective clinician education and counseling, as well as the referral for supplemental support services must be implemented and documented in future research studies and clinical practice.