Association of COMT rs4680 Genotype With Chronic Neuropathic Pain Experience in Patients With Sickle Cell Disease.

Purpose: The pain experience of patients with sickle cell disease (SCD) frequently consists of episodes of acute exacerbation. However, recent studies suggest that many patients who suffer from SCD have symptoms of chronic neuropathic pain. Additional research is needed to determine what role genotype plays in the patient's pain phenotype experience in SCD.

Special Section on Patient-Reported Outcomes and Informatics: Collection of Patient-Reported Outcome Measures in Rural and Underserved Populations.

The NIH Pragmatic Trials Collaboratory supports the design and conduct of 31 embedded pragmatic clinical trials, and many of these trials use patient-reported outcome measures (PROMs) to provide valuable information about their patients' health and wellness. Often these trials enroll medically underserved patients, including people with incomes below the federal poverty threshold, racial or ethnically minoritized groups, or rural or frontier communities. In this series of trial case reports, we provide lessons learned about collecting PROMs in these populations.

Barriers and Facilitators to Integrating Acupuncture into the U.S. Health Care System: A Scoping Review.

Acupuncture is a widely practiced complementary and integrative health modality that has multiple clinical applications. The use of acupuncture in the United States is rapidly increasing. Although studies have shown the efficacy and effectiveness of acupuncture for various ailments, the integration of acupuncture into the U.

Social network analysis of the CaRE health equity center: Team science in full display.

Cancer health disparities that exist in the Black or African American and Hispanic or Latino/x communities are scientific challenges, yet there are limited team science approaches to mitigate these challenges. This article's purpose is to evaluate the team science collaborations of the National Institutes of Health-funded Florida-California Cancer Research, Education & Engagement (CaRE ) Center partnership underscoring the inclusion of multidisciplinary team members and future under-represented minority (URM) cancer researchers. To understand our collaborative efforts, we conducted a social network analysis (SNA) of the CaRE Center partnership among University of Florida, Florida A&M University, and University of Southern California with data collected via the dimensions.

Adherence to a reproductive health intervention for young adults with sickle cell.

Background: The CHOICES intervention is tailored specifically for young adults with sickle cell disease (SCD) or sickle cell trait (SCT). The face-to-face (F2F) delivery format is feasible with efficacy for improving knowledge about reproductive health for those with SCD or SCT.

Purpose: The purpose of the study was to compare the participant adherence to a remote online CHOICES intervention study ( N = 107) and a F2F CHOICES intervention study ( N = 234).

Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory.

The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in the collection of these measures, including challenges related to competing health care system priorities, clinician's buy-in for adoption of patient-reported outcome measures, low adoption and reach of technology in low resource settings, and lack of consensus and standardization of patient-reported outcome measure selection and administration in the electronic health record. In this article, we share case examples and lessons learned, and suggest that, when using patient-reported outcome measures for embedded pragmatic clinical trials, investigators must make important decisions about whether to use data collected from the participating health system's electronic health record, integrate externally collected patient-reported outcome data into the electronic health record, or collect these data in separate systems for their studies.

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.

Feasibility of Nurse-led Development of Custom Virtual Reality Experiences for Health Care Interventions.

Background: The immersive and interactive nature of virtual reality (VR) renders it a potential pedagogical approach for nursing education. A bottleneck for exploiting VR advantages has been the complexity of creating new experiences; however, recent advances with VR hardware and software enable novice users to create compelling experiences.

Method: A case study describes an undergraduate nursing student with minimal technical skills using off-the-shelf VR software to create a pain management VR experience.

Florida-California Cancer Research, Education and Engagement (CaRE) Health Equity Center: Structure, Innovations, and Initial Outcomes.

Introduction: The Florida-California Cancer Research, Education, and Engagement (CaRE) Health Equity Center is a triad partnership committed to increasing institutional capacity for cancer disparity research, the diversity of the cancer workforce, and community empowerment. This article provides an overview of the structure, process innovations, and initial outcomes from the first 4 years of the CaRE triad partnership.

Methods: CaRE serves diverse populations in Florida and California using a "molecule to the community and back" model.

Equity and bias in electronic health records data.

Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions. However, many pragmatic trials rely on data from the electronic health record (EHR) data, which are subject to bias from incomplete data, poor data quality, lack of representation from people who are medically underserved, and implicit bias in EHR design. This commentary examines how the use of EHR data might exacerbate bias and potentially increase health inequities.

Care, lead, and inspire: Infusing innovation into nursing research and evidence-based practice course.

Background: Today's nursing workforce is expected to know how to identify and understand research methods and procedures and apply the most current evidence into daily practice. However, teaching evidence-based practice (EBP) in an undergraduate nursing curriculum poses unique challenges in overcoming students' perception of content relevancy to their educational experience, but also offers opportunities for innovation to facilitate critical thinking and clinical application.

Aims: The aim of this article is to report on how teaching and learning innovation was infused into a research and evidence-based practice course and the effect on students' perceptions of course values and effectiveness.

Developing an Implementation Blueprint for the NIH HEAL Initiative GRACE Trial: Perspectives on Acupuncture and Guided Relaxation for Chronic Sickle Cell Disease Pain.

This study aimed to explore perspectives of people living with sickle cell disease (SCD) and SCD clinic providers and staff about the use of acupuncture and guided relaxation for treating chronic SCD pain. Data obtained were to inform an implementation blueprint for an effectiveness implementation clinical trial (GRACE Trial) testing whether acupuncture or guided relaxation reduces chronic pain when compared with usual care. Qualitative research design.

Hybrid effectiveness-implementation trial of guided relaxation and acupuncture for chronic sickle cell disease pain (GRACE): A protocol.

Background: People with sickle cell disease frequently use complementary and integrative therapies to cope with their pain, yet few studies have evaluated their effectiveness. The 3-arm, 3-site pragmatic Hybrid Effectiveness-implementation Trial of Guided Relaxation and Acupuncture for Chronic Sickle Cell Disease Pain (GRACE) has 3 priorities: (1) evaluate guided relaxation and acupuncture to improve pain control; (2) determine the most appropriate and effective treatment sequence for any given patient based on their unique characteristics; and (3) describe the processes and structures required to implement guided relaxation and acupuncture within health care systems.

Methods: Participants (N = 366) are being recruited and randomized 1:1:1 to one of 2 intervention groups or usual care.

Factors associated with young adult engagement with a web-based sickle cell reproductive health intervention.

Objective: To determine the factors predicting the engagement of young adults who have sickle cell disease (SCD) or sickle cell trait (SCT) with an online reproductive health education intervention and engagement effects on knowledge.

Methods: The cross-sectional study included 167 participants who completed the web-based intervention either face-to-face (F2F) or online delivery (OL). Measures include: time used relative to length of the intervention narration and media (engagement) and the SCKnowIQ questionnaire.

A Novel Measure of Pain Location in Adults with Sickle Cell Disease.

Background: Pain intensity remains a primary focus clinically for sickle cell disease pain assessment despite the fact that pain quality and pain location and distribution are critical for clinical diagnosis and treatment of its etiology. However, in part because of measurement issues, scant evidence is available about pain location or its relationship to intensity and quality in adults with SCD.

Aim: Our study aim was to examine sickle cell disease pain location for relationships with pain quality and intensity measured in outpatient and inpatient settings.

Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait.

Our study purpose was to evaluate the variation and accuracy of tailored parenting plans individually generated as a supplement to reproductive health education on the genetic inheritance of sickle cell disease or sickle cell trait. We present a secondary data analysis of experimental group data from a randomized controlled trial. Participants completed the valid and reliable Internet-based Sickle Cell Reproductive Health Knowledge Parenting Intent Questionnaire.

A Stress and Pain Self-management mHealth App for Adult Outpatients With Sickle Cell Disease: Protocol for a Randomized Controlled Study.

Background: This paper describes the research protocol for a randomized controlled trial of a self-management intervention for adults diagnosed with sickle cell disease (SCD). People living with SCD experience lifelong recurrent episodes of acute and chronic pain, which are exacerbated by stress.

Objective: This study aims to decrease stress and improve SCD pain control with reduced opioid use through an intervention with self-management relaxation exercises, named You Cope, We Support (YCWS).

Adolescents' practical knowledge of asthma self-management and experiences in the context of acute asthma: a qualitative content analysis.

Objective: To characterize adolescents' practical knowledge of asthma self-management and experiences during acute asthma episodes, and compare practical knowledge between minority and non-minority groups.

Methods: We conducted a secondary analysis using a qualitative descriptive design of textual data collected from 126 adolescents that participated in a randomized controlled trial of an asthma self-management program. Directed content analysis was conducted using four constructs of asthma self-management including symptom prevention, symptom monitoring, acute symptom management, and symptom communication.

Adherence to Analgesics Among Outpatients Seriously Ill With Cancer.

Background: Adherence to prescribed analgesics for patients seriously ill with cancer pain is essential for comfort.

Objective: The objective of this study was to determine the analgesic adherence in seriously ill patients with cancer and its association with clinical and demographic characteristics.

Methods: This is a cross-sectional study.

Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA.

Individuals with sickle cell disease (SCD) and individuals with sickle cell trait (SCT) have different health trajectories, but it is unknown whether sociodemographic and clinical characteristics are associated with their likelihood to be a parent. The purpose of this study was to examine the sociodemographic and clinical characteristics associated with perceived likelihood-to-parent among a cohort of young adults with SCD or SCT in the USA. The participants were 234 young adults (82 males, 152 females) who had either SCD (n = 138) or SCT (n = 96).