Perceptions of Palliative Care: Demographics and Health Status Among the General Population in Florida and the United States.

BACKGROUND: Palliative care (PC) helps maintain quality of life for seriously ill patients, yet, many Americans lack knowledge of PC. AIM: To explore the relationships between knowledge of PC of individuals living in north-central Florida and throughout the United States. DESIGN: This cross-sectional survey with three sampling approaches, one was a community-engaged sample and two were panel respondent samples. Respondents and setting: Respondents of the Florida sample (n1 = 329) and the community-engaged sample (n2 = 100), were representative of the 23 Florida county general population. Respondents of the national sample (n = 1800) were adult members of a panel owned by a cloud-based survey platform. RESULTS: Young adults compared with adults (OR 1.62, 95% CI 1.14-2.28, P .007), middle-adults (OR 2.47, 95% CI 1.58-3.92, P < .001) and older-adults (OR 3.75, 95% CI 2.50-5.67, P < .001) were less likely to agree that the goal of PC is to help friends and family cope with a patient's illness, and that the goal of PC is to manage pain and other physical symptoms compared with adults (OR 1.67, 95% CI 1.20-2.30, P .002) middle-adults (OR 2.58, 95% CI 1.71-3.95, P < .001) and older-adults (OR 7.19, 95% CI 4.68-11.2, P < .001). Participants with greater rural identity (OR 1.39, 95% CI 1.31-1.48, P < .001) were more likely to agree that accepting PC means giving up. CONCLUSIONS: Increased knowledge of PC might be influenced through targeting educational interventions and educating the general population through social media use.

CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.

Our long-term goal is to foster genetically informed reproductive health knowledge and behaviors among young adults with sickle cell disease (SCD) or sickle cell trait (SCT) with a web-based, tailored, multimedia intervention called CHOICES. CHOICES is designed to help young adults with SCD or SCT preconception to gain knowledge of genetic inheritance, specify their reproductive health intentions (their parenting plan), and engage in reproductive health behaviors concordant with their parenting plan. In a previous study, we found high acceptability of both the e-Book (usual care control) and CHOICES interventions. We also found sustained (24 months), significant effects on knowledge but not on behavior, most likely because half of the recruited group was not at risk for their children inheriting SCD. Hence, we propose an adequately powered randomized controlled trial with the CHOICES intervention and an e-Book control to compare their effects on genetic inheritance knowledge and at-risk reproductive health behaviors (immediate posttest and at 6, 12, 18, and 24 months). We will conduct subgroup analyses to provide insight into the baseline knowledge and behavior as well as the intervention effects in different demographic or acceptability groups. Given the scalability and low cost of CHOICES, if proved to be effective, it can reach the affected population at low cost.

Single nucleotide polymorphisms and sickle cell disease-related pain: a systematic review.

Background: Scientists have speculated genetic variants may contribute to an individual's unique pain experience. Although research exists regarding the relationship between single nucleotide polymorphisms and sickle cell disease-related pain, this literature has not been synthesized to help inform future precision health research for sickle cell disease-related pain. Our primary aim of this systematic review was to synthesize the current state of scientific literature regarding single nucleotide polymorphisms and their association with sickle cell disease-related pain. Methods: Using the Prisma guidelines, we conducted our search between December 2021-April 2022. We searched PubMed, Web of Science, CINAHL, and Embase databases (1998-2022) and selected all peer-reviewed articles that included reports of associations between single nucleotide polymorphisms and sickle cell disease-related pain outcomes. Results: Our search yielded 215 articles, 80 of which were duplicates, and after two reviewers (GG, JD) independently screened the 135 non-duplicate articles, we retained 22 articles that met the study criteria. The synthesis of internationally generated evidence revealed that this scientific area remains predominantly exploratory in nature, with only three studies reporting sufficient power for genetic association. Sampling varied across studies with a range of children to older adults with SCD. All of the included articles (n = 22) examined acute pain, while only nine of those studies also examined chronic pain. Conclusion: Currently, the evidence implicating genetic variation contributing to acute and chronic sickle cell disease-related pain is characterized by modestly powered candidate-gene studies using rigorous SCD-pain outcomes. Effect sizes and directions vary across studies and are valuable for informing the design of future studies. Further research is needed to replicate these associations and extend findings with hypothesis-driven research to inform precision health research.

Intentional and unintentional benefits of minority writing accountability groups.

A faculty position can be a balancing act. Many new faculty, particularly minorities, struggle due to a lack of mentorship. Writing accountability groups (WAGs) offer new faculty an opportunity to glean advice from mentors and improve their writing skills and enhance their career development in science, technology, engineering, and mathematics (STEM).

Using champion-oriented mindset to overcome the challenges of graduate school: impact of workshop for graduate school skills on underrepresented minority retention.

Despite efforts to increase diversity, a glaring underrepresentation of minorities (URM) persists in the fields of science, technology, engineering, and mathematics (STEM). Graduate school can be a stressful step in the STEM pipeline, especially for students previously unaware of the structure and challenges of postgraduate education. To promote successful minority participation in STEM and prepare prospective students for the impending challenges of applying for and attending graduate school, we developed a workshop based on the mentoring and fostering of a champion-oriented mindset entitled, "The Trials and Tribulations of Graduate School: How Do You Make an Impact?." Students from the HBCU Winston-Salem State University attended the workshop, and a pre/post-a 10-point Likert scale-based survey was administered. The questions used in this seminar were newly designed by the authors as program evaluations. The results suggest that the workshop was well-received by the students and provided information that they considered helpful to help navigate the graduate school process.

An effective workshop on "How to be an Effective Mentor for Underrepresented STEM Trainees".

Despite an increase in programming to promote persons excluded by their ethnicity or race (PEER) scholars, minorities remain underrepresented in many STEM programs. The academic pipeline is largely leaky for underrepresented minority (URM) scholars due to a lack of effective mentorship. Many URM students experience microaggressions and discrimination from their mentors due to a lack of quality mentorship training. In this workshop, we provide a framework to show trainees what effective mentoring looks like. Mentees, especially URM trainees, can flourish in effective mentoring environments where they feel welcomed and can comfortably develop new ideas without feeling threatened by external factors. Effective mentoring environments provide motivational support, empathy, cultural competency, and training. This workshop explains facets of effective mentoring to students, as well as highlights to URM trainees why mentors can serve as valuable resources.

Developing the Florida Academic Cancer Center Alliance Health Disparities Common Measure: The Florida Health and Ancestry Survey.

PURPOSE: Our specific aim was to develop and assess the consensus-based validity of common measures for understanding health behaviors and ancestry in Florida's population subgroups and establish the feasibility of wide-scale implementation of the measures and biospecimen collection within three cancer centers' catchment areas. METHODS: Using the National Cancer Institute's Grid-Enabled Measures web-based platform and an iterative process, we developed the Florida Health and Ancestry Survey (FHAS). We then used three sampling approaches to implement the FHAS: community-engaged, panel respondent, and random digit dialing (RDD). We asked a subset of participants to provide a saliva sample for future validation of subjective ancestry report with DNA-derived ancestry markers. RESULTS: This process supported the FHAS content validity. As an indicator of feasibility, the goals for completed surveys by sampling approach were met for two of the three cancer centers, yielding a total of 1438 completed surveys. The RDD approach produced the most representative sample. The panel sampling approach produced inadequate representation of older individuals and males. The community-engaged approach along with social media recruitment produced extreme underrepresentation only for males. Two of the cancer centers mailed biospecimen kits, whereas one did not due to resource constraints. On average, the community engaged approach was more productive in obtaining returned biospecimen samples (80%) than the panel approach (48%). CONCLUSIONS: We successfully developed and implemented the FHAS as a common measure to show its feasibility for understanding cancer health disparities in Florida. We identified sampling approach successes and challenges to obtaining biospecimens for ancestry research.

The role of mentoring in promoting diversity equity and inclusion in STEM Education and Research.

The success of mentoring derives from active and respectful listening and the willingness to learn and accept opportunities for personal growth. This shapes every trainee and their destined path in science, technology, engineering, and mathematics (STEM). The act of cultivating rapport, asking, and pondering meaningful questions, and receiving constructive feedback are critical to support a productive mentoring relationship. Successful mentoring in STEM can be established and allow mentees, especially underrepresented minorities (URMs), to flourish in an environment where they feel welcomed and supported. However, mentees from underrepresented groups often experience inadequate mentoring due to a mentor's lack of awareness, poor trainings themselves, or lack of understanding of the mentee's hardships. It is important for mentors and mentees to work together to promote diversity, equity, and inclusion (DEI) in STEM education through creativity, authenticity, and networking. We analyzed data obtained from students who attended a recent workshop that are interested in going to graduate school. Our results show that despite low initial expectations for the workshop, many students were satisfied in the knowledge they gleaned. The future and role of diversity in STEM within these underrepresented groups lies in community support and an important role that they can play in the lives of others through DEI initiatives and throughout their careers all of which involves positive mentoring.

HUMAN STUDY COMT and DRD3 haplotype-associated pain intensity and acute care utilization in adult sickle cell disease.

A previous exploratory analysis of a COMT gene single-nucleotide polymorphism (SNP) and a DRD3 SNP by our group suggested possible contributions to pain-related acute care utilization in people with sickle cell disease (SCD). Our aim was to extend the analysis to gene-spanning haplotypes of COMT SNPs and DRD3 SNPs to investigate possible associations with pain intensity and pain-related acute care utilization in an SCD cohort. Genotyping was conducted, and clinical data were collected, including self-reported pain intensity using PAINReportIt® (average of current pain and least and worst in past 24 hours, average pain intensity [API]) and medical record-extracted, pain-related acute care utilization data of 130 adults with SCD. Haplotype blocks were identified based on linkage disequilibria (COMT = 7 haploblocks; DRD3 = 8 haploblocks). Regression analyses were tested for association between haplotypes and API and utilization, yielding several significant findings. For COMT block 1 (rs2075507, rs4646310, rs737865), the A-G-G haplotype was associated with higher API compared to the reference A-G-A (p = 0.02), whereas the A-A-A haplotype was associated with higher utilization (p = 0.02). For DRD3 block 2 (rs9817063, rs2134655, rs963468, and rs3773679), relative to reference T-C-G-C, the T-T-G-C haplotype was associated with higher utilization (p = 0.01). For DRD3 block 4 (rs167770, rs324029, and rs324023), the A-G-T haplotype was associated with higher API (p = 0.04) and utilization (p < 0.001) relative to reference G-A-T, whereas the A-A-T haplotype was associated with higher utilization (p = 0.01). We found COMT and DRD3 haplotypes associated with pain-related SCD features, suggesting that in future studies more emphasis be placed on cis effects of SNP alleles in evaluating genetic contributions to SCD pain and acute care utilization for pain.

Pain catastrophizing: A patient-centered approach to assessment.

ABSTRACT: Pain is a subjective experience and its perception and expression vary widely. Pain catastrophizing, which refers to patients' thoughts or feelings about their pain, may impact their communication of pain and nurses' subsequent response. This article discusses how nurses can more readily recognize, assess, and manage pain catastrophizing.

Analysis of AVPR1A, thermal and pressure pain thresholds, and stress in sickle cell disease.

Aim: In patients with sickle cell disease (SCD), negative physical and emotional experiences result from intense chronic and acute pain episodes, but factors underlying these, and their interactions, are not well understood. The arginine vasopressin receptor 1a gene (AVPR1A) single nucleotide polymorphism rs10877969 has been previously associated with aspects of acute pain and stress related pain. In this study, we tested for associations between this SNP, thermal and pressure pain thresholds, clinical pain, and stress in people with SCD. Methods: 150 adults enrolled with SCD completed pain intensity measures (Average Pain Intensity, API) and the Perceived Stress Questionnaire (PSQ). Thermal and pressure pain threshold data were available from quantitative sensory testing (QST), and rs10877969 genotypes were obtained. Results: In models adjusted for age and gender, between rs10877969 genotypes, we observed no significant differences in thermal (cold, p = 0.66; heat, p = 0.91) and mechanical (pressure, p = 0.33) pain thresholds. The association of rs10877969 with API (p = 0.09) was borderline, but non-significant with PSQ (p = 0.51). The correlation between clinical pain and environmental stress was significant, r = 0.18, p = 0.024, however, the interaction of genotype and PSQ was not significant (p = 0.63). Conclusion: Clinical and experimental pain were not significantly associated with the rs10877969 genotype. The rs10877969 genotype did not moderate the correlation between environmental stress and clinical pain in this population. However, a trend toward a protective T allele effect on average pain rating in SCD warrants future exploration of this SNP/gene in SCD.

Applying the NIA Health Disparities Research Framework to Identify Needs and Opportunities in Chronic Musculoskeletal Pain Research.

Disparities in the experience of chronic musculoskeletal pain in the United States stem from a confluence of a broad array of factors. Organized within the National Institute on Aging Health Disparity Research Framework, a literature review was completed to evaluate what is known and what is needed to move chronic musculoskeletal pain research forward specific to disproportionately affected populations. Peer-reviewed studies published in English, on human adults, from 2000 to 2019, and conducted in the United States were extracted from PubMed and Web of Science. Articles were reviewed for key words that focused on underrepresented ethnic/race groups with chronic musculoskeletal pain applying health factor terms identified in the NIAHealth Disparity Research Framework four levels of analysis: 1) environmental, 2) sociocultural, 3) behavioral, and 4) biological. A total of 52 articles met inclusion criteria. There were limited publications specific to underrepresented ethnic/race groups with chronic musculoskeletal pain across all levels with particular research gaps under sociocultural and biological categories. Current limitations in evidence may be supplemented by a foundation of findings specific to the broader topic of "chronic pain" which provides guidance for future investigations. Study designs including a focus on protective factors and multiple levels of analyses would be particularly meritorious. PERSPECTIVE: Chronic musculoskeletal pain unequally burdens underrepresented ethnic/race groups. In order to move research forward and to systematically investigate the complex array of factors contributing toward health disparities, an organized approach is necessary. Applying the NIA Health Disparities Research Framework, an overview of the current state of evidence specific to chronic musculoskeletal pain and underrepresented ethnic/race groups is provided with future directions identified.

The Imperative for Racial Equality in Pain Science: A Way Forward.

Racial equity is imperative to the future and integrity of scientific inquiry. In 2020, citizens of the United States (and globally) witnessed one of the most vile and egregious experiences of police brutality and systemic racism in recent history, the public execution of a Black American man. While some may isolate this and other similar events from influencing the scientific endeavors of pain researchers, events such as this can have a direct impact on the study, lived experience, and expression of pain in Black Americans. To truly understand the biopsychosocial effects of inequality and injustice on pain disparities, we must consider the unintended consequences that our current research approaches have in limiting the reliability and validity of scientific discovery. As we reflect on our current research practices in an effort to improve pain science, this perspective article discusses ways to initiate positive change in order to advance the science of pain in more equitable ways, not just for Black Americans, but for all individuals that identify as part of an underrepresented group. PERSPECTIVE: Elimination of inequities in pain care and research requires the identification, naming, and mitigation of systemic discriminatory and biased practices that limit our understanding of pain disparities. Now is the time to divest from traditional research methods and invest in equitable and innovative approaches to support pain researchers in advancing the science and improving the lives of people with pain.

A Mediation Appraisal of Catastrophizing, Pain-Related Outcomes, and Race in Adults With Knee Osteoarthritis.

The current cross-sectional study investigates whether pain catastrophizing mediates the relationship between ethnicity/race and pain, disability and physical function in individuals with knee osteoarthritis. Furthermore, this study examined mediation at 2-year follow-up. Participants included 187 community-dwelling adults with unilateral or bilateral knee pain who screened positive for knee osteoarthritis. Participants completed several self-reported pain-related measures and pain catastrophizing subscale at baseline and 2-year follow-up. Non-Hispanic Black (NHB) adults reported greater pain, disability, and poorer functional performance compared to their non-Hispanic White (NHW) counterparts (Ps < .05). NHB adults also reported greater catastrophizing compared to NHW adults. Mediation analyses revealed that catastrophizing mediated the relationship between ethnicity/race and pain outcome measures. Specifically, NHB individuals reported significantly greater pain and disability, and exhibited lower levels of physical function, compared to NHW individuals, and these differences were mediated by higher levels of catastrophizing among NHB persons. Catastrophizing was a significant predictor of pain and disability 2-years later in both ethnic/race groups. These results suggest that pain catastrophizing is an important variable to consider in efforts to reduce ethnic/race group disparities in chronic pain. The findings are discussed in light of structural/systemic factors that may contribute to greater self-reports of pain catastrophizing among NHB individuals. PERSPECTIVE: The current study examines whether pain catastrophizing mediates the relationship between ethnicity/race and OA-related pain, disability, and functional impairment at baseline and during a 2-year follow-up period in non-Hispanic Black and non-Hispanic White adults with knee pain. These results point to the need for interventions that target pain catastrophizing.

Knee pain trajectories over 18 months in non-Hispanic Black and non-Hispanic White adults with or at risk for knee osteoarthritis.

BACKGROUND: Pain is the hallmark symptom of knee osteoarthritis (OA), and varies widely across individuals. Previous research has demonstrated both fluctuating and stable pain trajectories in knee OA using various time periods. Changes in pain assessed quarterly (i.e. 3-month intervals) in knee OA are relatively unknown. The current study aimed to investigate temporal variations in pain over a one and a half year period (18 months) based on quarterly characteristic pain assessments, and to examine differences in pain patterns by sociodemographic and baseline pain characteristics. METHODS: The sample included a prospective cohort of 188 participants (mean age 58 years; 63% female; 52% non-Hispanic Black) with or at risk for knee OA from an ongoing multisite investigation of ethnic/race group differences. Knee pain intensity was self-reported at baseline and quarterly over an18-month period. Baseline pain assessment also included frequency, duration, and total number of pain sites. Group-based trajectory modeling was used to identify distinct pain trajectories. Multinomial logistic regression was used to examine associations between sociodemographic characteristics, risk factors, and pain trajectory groups. RESULTS: Pain trajectories were relatively stable among a sample of adults with knee pain. Four distinct pain trajectories emerged in the overall sample, with the largest proportion of participants (35.1%) classified in the moderate-high pain group. There were significant relationships between age, education, income, ethnicity/race and trajectory group; with younger, less educated, lower income, and non-Hispanic Black participants had a greater representation in the highest pain trajectory group. CONCLUSIONS: Pain remained stable across a one and a half-year period in adults with or at risk for knee osteoarthritis, based on quarterly assessments. Certain sociodemographic variables (e.g. ethnicity/race, education, income, age) may contribute to an increased risk of experiencing greater pain.

Managing osteoarthritis pain with smart technology: a narrative review.

Osteoarthritis (OA) is a highly prevalent musculoskeletal condition worldwide. More than 300 million individuals are affected by OA, and pain is the most common and challenging symptom to manage. Although many new advances have led to improved OA-related pain management, smart technology offers additional opportunities to enhance symptom management. This narrative review identifies and describes the current literature focused on smart technology for pain management in individuals with OA. In collaboration with a health sciences librarian, an interdisciplinary team of clinician-scientists searched multiple databases (e.g. PubMed, CINAHL and Embase), which generated 394 citations for review. After inclusion criteria were met, data were extracted from eight studies reporting on varied smart technologies, including mobile health, wearables and eHealth tools to measure or manage pain. Our review highlights the dearth of research in this crucial area, the implications for clinical practice and technology development, and future research needs.

A Scoping Review of Nursing's Contribution to the Management of Patients with Pain and Opioid Misuse.

BACKGROUND: Nursing brings a unique lens to care of patients with pain and opioid misuse. AIMS: This scoping review describes nursing's contribution to the literature on the management of patients with pain and opioid misuse, generating evidence to guide clinical care. DESIGN: The scoping review was conducted according to Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews guideline. DATA SOURCES: Using combined key terms ("opioid misuse," "pain," "nursing") in systematic searches in PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) electronic databases, snowball technique, and personal knowledge resulted in 108 relevant articles, reports, and websites. ANALYSIS METHOD: Summative approach to content analysis was used to quantify and describe nursing's contribution to the literature. RESULTS: Contributions of nurses emerged in the areas of research, clinical practice, policy, and education. The highest number of publications addressed research (50%, 54 of 108), whereas the fewest number of publications involved education (7%, 8 of 108). CONCLUSION: Results provide a picture of the breadth of expertise and crucial leadership that nurses contribute to influence management of patients with pain and opioid misuse. IMPLICATIONS FOR NURSING: This scoping review indicates the importance of continued support from key stakeholders, including training and interprofessional collaboration opportunities supported by the National Institutes of Health, to sustain nursing's contribution to quality care of patients with pain and opioid misuse. Ultimately, all health care professionals must collaborate to conduct rigorous research and construct evidence-based guidelines to inform policy initiatives and education strategies to solve the complex co-occurring epidemics of pain and opioid misuse.

Patterns and Correlates of Self-Management Strategies for Osteoarthritis-Related Pain Among Older Non-Hispanic Black and Non-Hispanic White Adults.

OBJECTIVE: Knee osteoarthritis (OA) is a leading source of pain and disability among older adults. Self-management (SM) strategies are recommended to manage OA symptoms. Sociodemographic and clinical characteristics, along with other factors, may influence SM utilization rate. This study sought to examine the prevalence and correlates of SM use for pain among non-Hispanic Black patients (NHB) and non-Hispanic White patients (NHW) older adults with or at risk for knee OA. METHODS: A secondary data analysis was conducted on the Understanding Pain and Limitations in Osteoarthritic Disease multisite observational study, which included NHB (n = 104) and NHW (n = 98) community-dwelling older adults with or at risk for knee OA. Participants completed measures of sociodemographics, pain SM use, coping, and clinical and experimental pain. RESULTS: Clinical and experimental pain were significantly greater among NHBs compared to NHWs. There were no significant differences in use of total SM by ethnicity/race. Interestingly, multiple linear regression revealed that clinical and experimental pain indices, as well as coping, number of pain sites, age, and sex were differentially associated with total SM use between NHBs and NHWs. There were significant ethnicity/race by type of pain management interaction effects for pain measures. CONCLUSION: SM is common among older adults with or at risk for knee OA pain, and the prevalence of SM does not differ by ethnicity/race, but many guideline-recommended interventions for OA are underutilized. Importantly, different factors were associated with the use of SM, highlighting distinct biopsychosocial mechanisms contributing to SM use in NHBs and NHWs.