Social Determinants of Cardiovascular Disease.

Social determinants of health (SDoH), which encompass the economic, social, environmental, and psychosocial factors that influence health, play a significant role in the development of cardiovascular disease (CVD) risk factors as well as CVD morbidity and mortality. The COVID-19 pandemic and the current social justice movement sparked by the death of George Floyd have laid bare long-existing health inequities in our society driven by SDoH. Despite a recent focus on these structural drivers of health disparities, the impact of SDoH on cardiovascular health and CVD outcomes remains understudied and incompletely understood. To further investigate the mechanisms connecting SDoH and CVD, and ultimately design targeted and effective interventions, it is important to foster interdisciplinary efforts that incorporate translational, epidemiological, and clinical research in examining SDoH-CVD relationships. This review aims to facilitate research coordination and intervention development by providing an evidence-based framework for SDoH rooted in the lived experiences of marginalized populations. Our framework highlights critical structural/socioeconomic, environmental, and psychosocial factors most strongly associated with CVD and explores several of the underlying biologic mechanisms connecting SDoH to CVD pathogenesis, including excess stress hormones, inflammation, immune cell function, and cellular aging. We present landmark studies and recent findings about SDoH in our framework, with careful consideration of the constructs and measures utilized. Finally, we provide a roadmap for future SDoH research focused on individual, clinical, and policy approaches directed towards developing multilevel community-engaged interventions to promote cardiovascular health.

Comparing symptom clusters in cancer survivors by cancer diagnosis: A latent class profile analysis.

PURPOSE: Research on symptom clusters in oncology is progressing, but knowledge gaps remain. One question is whether the number and types of symptom subgroups (i.e., latent classes) differ based on cancer diagnosis. The purpose of this study was to: (1) identify and compare latent class subgroups based on four highly prevalent symptoms (pain, fatigue, sleep disturbance, and depression), and (2) examine the differences in sociodemographic and clinical factors in the identified latent classes across the seven cancer types (i.e., prostate, non-small cell lung, non-Hodgkin's lymphoma, breast, uterine, cervical, and colorectal cancer). METHODS: This study is a cross-sectional secondary analysis of data obtained from the My-Health study in partnership with four Surveillance, Epidemiology, and End Results (SEER) cancer registries located in California (two), Louisiana, and New Jersey. The sample included 4,762 cancer survivors 6-13 months following diagnosis of one of the seven cancer types mentioned. Latent class profile analysis was used. RESULTS: Subjects were primarily young (59% age 21-64 years), Caucasian (41%), married/cohabitating (58%) and unemployed (55%). The number and types of symptom subgroups varied across these seven cancer populations: four-subgroups were the common in prostate, lung, non-Hodgkin's lymphoma, and breast cancer survivors. Unmarried, low education, and unemployment status were associated with high risk of symptom burden across the cancer types. CONCLUSION: Identifying symptom subgroups by cancer diagnosis has the potential to develop innovative and effective targeted interventions in cancer survivors. Further research is needed to establish extensive knowledge in symptom clustering between treatment regimens, and short-term and long-term cancer survivors.

Participants' perceptions support the coexistence of benefits and burdens of cancer clinical trial participation.

BACKGROUND: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation. MATERIALS AND METHODS: This sub-group analysis of 21 participants was part of a larger sequential, explanatory mixed methods study. We used Creamer's integrated approach to linking quantitative and qualitative data to assess convergence, with qualitative data explaining quantitative results. Participants were grouped into four categories based on quantitative benefit/burden scores and thematic analysis of their qualitative data was used to describe these categories. RESULTS: Across groups participants varied in descriptions of benefits and burdens of cancer clinical trial participation and reasons for participating. Those reporting high benefit/low burden described "seizing the opportunity to participate;" those reporting low benefit/low burden described "taking responsibility" through trial participation; those reporting low benefit/high burden described how they were "willing to endure," and those with high benefit/high burden emphasized "deciding to act." CONCLUSIONS: Participants' qualitative descriptions of benefits and burdens were more nuanced and dynamic than reflected in their quantitative ratings. Thus, current measures may be missing important concepts, such as logistic challenges of trial participation. Our results have implications for consenting procedures and decisional support guidance offered to patients and their caregivers.

Patterns of health-promoting behaviors and associated factors in family caregivers of people receiving cancer treatment: A latent class profile analysis.

OBJECTIVE: Family caregivers tend to neglect their health while prioritizing the needs of their care recipients. Identifying subgroups of caregivers based on the patterns of health-promoting behaviors (HPBs) may help develop tailored interventions for them, yet little is known. The purpose of this study was: (1) to identify latent classes with distinct patterns of HPBs in family caregivers of people with cancer; and (2) to investigate factors associated with the latent class membership. METHODS: We performed a cross-sectional data analysis using the baseline dataset from a longitudinal survey study that assessed HPBs of family caregivers of individuals who received cancer treatment at a national research hospital (N = 124). Latent class profile analysis was conducted to identify latent classes based on the subdomains of the Health-Promoting Lifestyle Profile II, followed by multinomial logistic regression analysis to investigate factors associated with the latent class membership. RESULTS: Three latent classes were identified: a high level of HPB (Class 1, 25.8%); a moderate level of HPB (Class 2, 53.2%); and a low level of HPB (Class 3, 21.0%) of HPBs. Controlling for caregiver age and sex, caregiver burden due to lack of family support, perceived stress, self-efficacy and body mass index were factors associated with the latent class membership. CONCLUSIONS: HPBs of our caregiver sample appeared in relatively stable patterns at different levels. Higher caregiver burden and perceived stress and lower self-efficacy were associated with the lower practice of HPBs overall. Our findings may serve as a reference for screening caregivers who need support and developing person-centered interventions.

The role of the oral microbiome in smoking-related cardiovascular risk: a review of the literature exploring mechanisms and pathways.

Cardiovascular disease is a leading cause of morbidity and mortality. Oral health is associated with smoking and cardiovascular outcomes, but there are gaps in knowledge of many mechanisms connecting smoking to cardiovascular risk. Therefore, the aim of this review is to synthesize literature on smoking and the oral microbiome, and smoking and cardiovascular risk/disease, respectively. A secondary aim is to identify common associations between the oral microbiome and cardiovascular risk/disease to smoking, respectively, to identify potential shared oral microbiome-associated mechanisms. We identified several oral bacteria across varying studies that were associated with smoking. Atopobium, Gemella, Megasphaera, Mycoplasma, Porphyromonas, Prevotella, Rothia, Treponema, and Veillonella were increased, while Bergeyella, Haemophilus, Lautropia, and Neisseria were decreased in the oral microbiome of smokers versus non-smokers. Several bacteria that were increased in the oral microbiome of smokers were also positively associated with cardiovascular outcomes including Porphyromonas, Prevotella, Treponema, and Veillonella. We review possible mechanisms that may link the oral microbiome to smoking and cardiovascular risk including inflammation, modulation of amino acids and lipids, and nitric oxide modulation. Our hope is this review will inform future research targeting the microbiome and smoking-related cardiovascular disease so possible microbial targets for cardiovascular risk reduction can be identified.

Going virtual during the COVID-19 pandemic: adaptation of a mixed-methods dietary behavior study within a community-based participatory research study of African-American adults at risk for cardiovascular disease.

BACKGROUND: Identifying mechanisms to maintain CBPR studies during an infectious disease pandemic is vital. The current paper describes the changes in methods and processes conducted within a CBPR mixed-methods study to a virtual setting during the novel coronavirus (COVID-19) pandemic. METHOD: The DC Community Organizing for Optimal Culinary Knowledge study with Heart (DC COOKS with Heart) was designed to assess the feasibility of a dietary behavior intervention among African-American adults that are at risk for cardiovascular disease (CVD). The study is under the umbrella of an ongoing CBPR study and community advisory board that facilitates community involvement in study design and promotes ongoing engagement with community members and leaders. The study population for D.C. COOKS with Heart consists of adult African-American individuals who live in two low-resource neighborhoods in Washington, D.C., which were impacted disproportionately by COVID. Eligible study participants who previously participated in the DC CHOC community-based studies were contacted to participate in Phase 1. The quantitative part of the mixed-methods included survey data collection. RESULTS: Due to the pandemic, the mode of data collection for surveys changed from self-administered face-to-face to internet-based. All virtual study procedures were conducted between March and April, 2021. Anticipated benefits of the virtual setting included participant safety during the pandemic, ease of logistics for participants. Anticipated challenges included administration of electronic devices to participants, research team training, and potential threats to established trust related to the privacy and confidentiality of participants. CONCLUSION: The transition to a virtual setting for study procedures in a mixed-methods study was conducted successfully in terms of recruitment, retention of participants, and training of research team members. The virtual transition required established and ongoing engagement through the community advisory board and CBPR practices, institutional support through virtual research policies, collaborations with information technology-based teams, and equipment administration for the study. TRIALS REGISTRATION: NCT04305431 . Registered on March 12, 2020.

Defining the role of individuals prepared as a doctor of nurse practice in symptoms science research.

PURPOSE: The Doctor of Nursing Practice (DNP) programs have grown exponentially for the last 10 years across the United States. However, the intra-professional collaboration among DNP and PhD scholars is not clearly demonstrated in the literature as it relates to frequency, training models, and the outcomes of these collaborations on translation. The purposes of this paper are to: (1) examine the role for DNP nurses in symptom science research and (2) describe training models to cultivate the PhD-DNP collaboration to strengthen the translation of discoveries from nursing research, to facilitate implementation of discoveries, and to improve clinical practice of nurses. METHODS: A targeted review of the literature was conducted to identify, (1) the role of the DNP, (2) examples of PhD-DNP collaborations, (3) training models that support collaborations, and (4) the outcomes of these intra-professional collaborations. RESULTS: Two articles reported on PhD-DNP collaboration within a university setting; however, they did not address how the partnership was modeled. One additional article described an academic-hospital partnership model aimed at MSN-prepared advanced practice nurses (APRN) by which outcomes were measured. No examples were found outside of academic settings. The National Institute of Nursing Research (NINR) has established the Symptom Science Center (SSC) with an interest in training the next generation of symptom scientists. By developing a training curriculum through the NINR SSC, DNP-prepared students and practitioners can be exposed to the research enterprise and potentially develop early partnerships with PhD-prepared students and scholars that lead to research translation. CONCLUSION: The NINR Department of Intramural Research (DIR) and National Institutes of Health Clinical Center are dedicated to building stronger ties between PhD- and DNP-prepared scientists. The SSC can serve as an optimal platform to promote the collaboration of PhD and DNP nurses to advance symptom science translation. CLINICAL RELEVANCE: Nurses have a remarkable role in early detection of disease progression. Training opportunities to cultivate the PhD-DNP collaboration have significant relevance for expediting the translation of nursing science to nursing practice.

Factors influencing loneliness in cancer caregivers: A longitudinal study.

OBJECTIVE: To describe levels of loneliness in cancer caregivers over a 6 month time period, and to examine factors that influence changes in loneliness in caregivers over time. METHODS: Prospective, repeated measures design was utilized to examine levels of loneliness and factors that influence loneliness in 129 family caregivers of individuals undergoing cancer treatment at three time points over a 6 month period. Measures included: PROMIS global health and sleep disturbance; NIH Toolbox loneliness, self-efficacy and perceived stress; Family Care Inventory mutuality scale; and Caregiver Reaction Assessment. RESULTS: Approximately one third (30.2%, n = 39) of the caregivers had high levels of loneliness, and levels of loneliness did not change over the three time points (P = .985). For any given time point, caregivers who were not married (P = .008), not working (P = .027), with worse mental health (P = .015), more perceived-stress (P < .0001), and more caregiver burden (P = .003) reported higher levels of loneliness. CONCLUSION: This study provides guidance for clinicians attempting to identify at-risk caregivers by confirming the findings of previous research that caregivers with higher burden, stress and in poor mental health are at increased risk for loneliness. This study provides preliminary evidence that continuing to work during the caregiving trajectory may be beneficial to caregivers by reducing levels of loneliness. Future research is needed to confirm these findings and to examine novel interventions to reduce loneliness in cancer caregivers.

Identification of Distinct Latent Classes Related to Sleep, PTSD, Depression, and Anxiety in Individuals Diagnosed With Severe Alcohol Use Disorder.

Objective/Background: Alcohol use disorders (AUDs) are often accompanied by comorbid physiologic and psychosocial conditions, including sleep disturbances. Sleep disturbances in these individuals may be associated with increased risk of relapse to drinking following detoxification and rehabilitation. Participants: The sample of inpatient treatment-seeking individuals with AUDs (N = 164) was 70.1% male and 47.6% African American with a mean age of 45.6 years (±9.5 years). Methods: Latent class analysis (LCA) was used to identify unmeasured class membership based on seven indicators: maximum Clinical Institute Withdrawal Assessment (CIWA) scores; sleep efficiency (actigraphy); sleep disturbances (Pittsburgh Sleep Quality Index-PSQI); anxiety or depression (Comprehensive Psychopathological Rating Scale [CPRS]); and current and lifetime posttraumatic stress disorder (PTSD). Results: The average number of drinking days in the 90 days preceding admission was 72.0 (±22.0 days), with an average of 13.16 drinks per day (±5.70 drinks). Nearly one quarter (24.4%) of respondents reported lifetime PTSD. Three latent classes were identified: Sleep Disturbance (SD); Sleep Disturbance, Anxiety and Depression (SD/AD); and Sleep Disturbance, Anxiety and Depression, and PTSD (SD/AD/PTSD). Members of the SD/AD/PTSD group were more likely to be female and had the highest withdrawal and sleep disturbance scores of all three groups. Conclusion: Findings support the use of LCA to identify subgroups of individuals with AUDs and accompanying sleep disturbances. Class identification may provide clinicians with insight into the integrative tailoring of interventions that meet the varied needs of individuals with AUDs, accompanying comorbidities, and sleep disturbances.

Clinicians' perceptions of usefulness of the PubMed4Hh mobile device application for clinical decision making at the point of care: a pilot study.

BACKGROUND: Although evidence-based practice in healthcare has been facilitated by Internet access through wireless mobile devices, research on the effectiveness of clinical decision support for clinicians at the point of care is lacking. This study examined how evidence as abstracts and the bottom-line summaries, accessed with PubMed4Hh mobile devices, affected clinicians' decision making at the point of care. METHODS: Three iterative steps were taken to evaluate the usefulness of PubMed4Hh tools at the NIH Clinical Center. First, feasibility testing was conducted using data collected from a librarian. Next, usability testing was carried out by a postdoctoral research fellow shadowing clinicians during rounds for one month in the inpatient setting. Then, a pilot study was conducted from February, 2016 to January, 2017, with clinicians using a mobile version of PubMed4Hh. Invitations were sent via e-mail lists to clinicians (physicians, physician assistants and nurse practitioners) along with periodic reminders. Participants rated the usefulness of retrieved bottom-line summaries and abstracts and indicated their usefulness on a 7-point Likert scale. They also indicated location of use (office, rounds, etc.). RESULTS: Of the 166 responses collected in the feasibility phase, more than half of questions (57%, n = 94) were answerable by both the librarian using various resources and by the postdoctoral research fellow using PubMed4Hh. Sixty-six questions were collected during usability testing. More than half of questions (60.6%) were related to information about medication or treatment, while 21% were questions regarding diagnosis, and 12% were specific to disease entities. During the pilot study, participants reviewed 34 abstracts and 40 bottom-line summaries. The abstracts' usefulness mean scores were higher (95% CI [6.12, 6.64) than the scores of the bottom-line summaries (95% CI [5.25, 6.10]). The most frequent reason given was that it confirmed current or tentative diagnostic or treatment plan. The bottom-line summaries were used more in the office (79.3%), and abstracts were used more at point of care (51.9%). CONCLUSIONS: Clinicians reported that retrieving relevant health information from biomedical literature using the PubMed4Hh was useful at the point of care and in the office.

A systematic approach for studying the signs and symptoms of fever in adult patients: the fever assessment tool (FAST).

BACKGROUND: Although body temperature is one of four key vital signs routinely monitored and treated in clinical practice, relatively little is known about the symptoms associated with febrile states. The purpose of this study was to assess the validity, reliability and feasibility of the Fever Assessment Tool (FAST) in an acute care research setting. METHODS: Qualitative: To assess content validity and finalize the FAST instrument, 12 adults from an inpatient medical-surgical unit at the National Institutes of Health (NIH) Clinical Center participated in cognitive interviews within approximately 12 h of a febrile state (tympanic temperature ≥ 38° Celsius). Quantitative: To test reliability, validity and feasibility, 56 new adult inpatients completed the 21-item FAST. RESULTS: The cognitive interviews clarified and validated the content of the final 21-item FAST. Fifty-six patients completed the FAST from two to 133 times during routine vital sign assessment, yielding 1,699 temperature time points. Thirty-four percent of the patients (N = 19) experienced fever at one or more time points, with a total of 125 febrile time points. Kuder-Richardson 20 (KR-20) reliability of the FAST was 0.70. Four nonspecific symptom categories, Tired or Run-Down (12), Sleepy (13), Weak or Lacking Energy (11), and Thirsty (9) were among the most frequently reported symptoms in all participants. Using Generalized Estimating Equations (GEE), the odds of reporting eight symptoms, Warm (4), Sweating (5), Thirsty (9), General Body Aches (10), Weak or Lacking Energy (11), Tired or Run Down (12) and Difficulty Breathing (17), were increased when patients had a fever (Fever Now), compared to the two other subgroups-patients who had a fever, but not at that particular time point, (Fever Not Now) and patients who never had a fever (Fever Never). Many, but not all, of the comparisons were significant in both groups. CONCLUSION: Results suggest the FAST is reliable, valid and easy to administer. In addition to symptoms usually associated with fever (e.g. feeling warm), symptoms such as Difficulty Breathing (17) were identified with fever. Further study in a larger, more diverse patient population is warranted. TRIAL REGISTRATION: Clinical Trials Number: NCT01287143 (January 2011).

The Human Microbiome and Understanding the 16S rRNA Gene in Translational Nursing Science.

BACKGROUND: As more is understood regarding the human microbiome, it is increasingly important for nurse scientists and healthcare practitioners to analyze these microbial communities and their role in health and disease. 16S rRNA sequencing is a key methodology in identifying these bacterial populations that has recently transitioned from use primarily in research to having increased utility in clinical settings. OBJECTIVES: The objectives of this review are to (a) describe 16S rRNA sequencing and its role in answering research questions important to nursing science; (b) provide an overview of the oral, lung, and gut microbiomes and relevant research; and (c) identify future implications for microbiome research and 16S sequencing in translational nursing science. DISCUSSION: Sequencing using the 16S rRNA gene has revolutionized research and allowed scientists to easily and reliably characterize complex bacterial communities. This type of research has recently entered the clinical setting, one of the best examples involving the use of 16S sequencing to identify resistant pathogens, thereby improving the accuracy of bacterial identification in infection control. Clinical microbiota research and related requisite methods are of particular relevance to nurse scientists-individuals uniquely positioned to utilize these techniques in future studies in clinical settings.

Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation.

There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver's health are less understood. This study sought to compare self-reported stress, anxiety and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient's HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days) and (3) 6 weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57% or 57.1%) and married (95.2%), with a mean age of 52 ± 11.4 years. Caregiver perceived stress, anxiety and depression scores were significantly higher than controls (p < 0.001) with effect sizes (ES) ranging from 1.37 to 1.80 and they did not change over time (p > 0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p = 0.013; ES = 0.81) and 6 weeks after discharge (p = 0.028; ES = 0.72) but exhibited no significant relationship between self-reported stress and serum cortisol. In addition, caregivers showed a significant inverse relationship between stress and epinephrine levels (r(s)=-0.654, p = 0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted.

Developing Competency to Sustain Evidence-Based Practice.

Organizations must ensure that nursing care delivery is based on best evidence. This article describes how a clinical research hospital used a competency-based approach to structure the development and execution of a strategic plan and integrated evidence-based practice concepts into the activities of nurses at all levels. The article will also describe the process for developing and implementing the competency across our department including outcomes achieved.

Use of non-pharmaceutical interventions to reduce the transmission of influenza in adults: A systematic review.

During seasonal influenza epidemics and pandemics, virus transmission causes significant public health concern. Reduction of viral transmission by non-pharmaceutical interventions (NPI) has a significant appeal and is often recommended. However, the efficacy of such interventions is unclear. A systematic literature review was undertaken to identify and evaluate the published literature on NPI efficacy to prevent human transmission of influenza virus in adults. Reviewers assessed the quality of eligible studies utilizing the Critical Appraisal Skills Programme for bias and the Scottish Intercollegiate Guidelines Network for methodological quality. Studies were assessed for risk of bias domains of random sequence generation, allocation concealment, attribution bias, selective reporting and blinding. Relevant citations of 2247 were reduced to 100 for full-text evaluation. Only seven met all selection criteria and pooled analysis was not feasible. Of the seven studies, two were randomized controlled trials (RCT) and five were cluster RCT. The main NPI studied were disinfection and hygiene; barriers; and combined NPI. However, these seven RCT had significant design flaws. Only two studies used laboratory confirmed influenza and poor statistical power was a major problem. Positive significant interventions included professional oral hygiene intervention in the elderly and hand washing. Despite the potential for NPI in preventing influenza transmission, there is very limited data available. Hand washing and dental hygiene may be useful, but other interventions have not been fully assessed. Properly designed studies evaluating large populations including 'at risk' patients and in a variety of communities are needed.

The Relationship of Adverse Childhood Experiences to PTSD, Depression, Poly-Drug Use and Suicide Attempt in Reservation-Based Native American Adolescents and Young Adults.

Adverse childhood experiences (ACEs) are associated with numerous risk behaviors and mental health outcomes among youth. This study examines the relationship between the number of types of exposures to ACEs and risk behaviors and mental health outcomes among reservation-based Native Americans. In 2011, data were collected from Native American (N = 288; 15-24 years of age) tribal members from a remote plains reservation using an anonymous web-based questionnaire. We analyzed the relationship between six ACEs, emotional, physical, and sexual abuse, physical and emotional neglect, witness to intimate partner violence, for those <18 years, and included historical loss associated symptoms, and perceived discrimination for those <19 years; and four risk behavior/mental health outcomes: post-traumatic stress disorder (PTSD) symptoms, depression symptoms, poly-drug use, and suicide attempt. Seventy-eight percent of the sample reported at least one ACE and 40 % reported at least two. The cumulative impact of the ACEs were significant (p < .001) for the four outcomes with each additional ACE increasing the odds of suicide attempt (37 %), poly-drug use (51 %), PTSD symptoms (55 %), and depression symptoms (57 %). To address these findings culturally appropriate childhood and adolescent interventions for reservation-based populations must be developed, tested and evaluated longitudinally.

Establishing good collaborative research practices in the responsible conduct of research in nursing science.

BACKGROUND: Team science is advocated to speed the pace of scientific discovery, yet the goals of collaborative practice in nursing science and the responsibilities of nurse stakeholders are sparse and inconclusive. The purpose of this study was to examine nurse scientists' views on collaborative research as part of a larger study on standards of scientific conduct. METHODS: Web-based descriptive survey of nurse scientists randomly selected from 50 doctoral graduate programs in the United States. RESULTS: Nearly forty percent of nurse respondents were not able to identify good collaborative practices for the discipline; more than three quarters did not know of any published guidelines available to them. Successful research collaborations were challenged by different expectations of authorship and data ownership, lack of timeliness and communication, poorly defined roles and responsibilities, language barriers, and when they involve junior and senior faculty working together on a project. CONCLUSION: Individual and organizational standards, practices, and policies for collaborative research needs clarification within the discipline.

Sleep disturbance, depression and pain in adults with sickle cell disease.

BACKGROUND: Sleep disturbance and depression are commonly encountered in primary care. In sickle cell disease, depression is associated with pain, poor treatment compliance, and lower quality of life. The prevalence of sleep disturbance and its effect upon quality of life in adults with sickle cell disease is unknown. The goal of this study was to determine the prevalence of sleep disturbance and if it is associated with pain and depression in sickle cell disease. METHODS: Three hundred twenty eight adults with sickle cell disease enrolled on the Bethesda Sickle Cell Cohort Study were assessed using the Pittsburgh Sleep Quality Index and Beck Depression Inventory II screening measures as a cross-sectional survey. Scores greater than 5 (Pittsburgh Sleep Quality Index) and 16 (Beck Depression Inventory II) defined sleep disturbance and depression, respectively. Clinical and laboratory parameters were also assessed. RESULTS: The mean Pittsburgh Sleep Quality Index score was 8.4 (SD ± 4.2) indicating a 71.2% prevalence of sleep disturbance. The mean Beck Depression Inventory II score was 8.0 (SD ± 8.9). Sixty five (20.6%) participants had a score indicating depression, and half of these (10.0%) had thoughts of suicide. Both Pittsburgh Sleep Quality Index and Beck Depression Inventory II scores were significantly correlated (p < .001). The number of days with mild/moderate pain (p = .001) and a history of headaches (p = .005) were independently associated with depression by multivariate regression analysis. Patients with sleep disturbance were older (p = .002), had higher body mass index (p = .011), had more days of pain (p = .003) and more frequent severe acute painful events (emergency room visits and hospitalizations) during the previous 12 months (p < .001). CONCLUSIONS: More than 70 percent of adults with sickle cell disease had sleep disturbance, while 21 percent showed evidence of clinical depression. Sleep disturbance and depression were correlated, and were most common among those with more frequent pain. Providers caring for adults with sickle cell disease and frequent pain should consider screening for these common co-morbidities. Additional study is needed to confirm these findings and to determine if treatments for pain, depression or sleep disturbances will improve quality of life measures in this patient population. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT00011648.

Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial.

BACKGROUND: Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients' perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial. METHODS: A qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n = 34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication. RESULTS: THREE OVERARCHING THEMES EMERGED WHEN ASKED WHETHER RECEIVING PAIN AND PALLIATIVE CARE SERVICES MADE THEM MORE LIKELY TO REMAIN ENROLLED IN THEIR PRIMARY CANCER CLINICAL TRIAL: patients' past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams. CONCLUSIONS: Our findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research. TRIAL REGISTRATION: NIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365.