Publications

Abstract

Introduction: Although prostate magnetic resonance imaging (MRI) is commonly used in the diagnosis, staging and active surveillance of prostate cancer, little is known about patient perspectives on MRI. Methods: We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- and intermediate-risk prostate cancer managed with active surveillance. Interviews focused on experiences with and knowledge of prostate MRI and MRI-ultrasound fusion biopsy during active surveillance. We purposively sampled patients who received prostate MRI as part of their clinical care, conducted interviews until reaching thematic saturation and performed conventional content analysis to analyse data. Results: Twenty patients aged 51–79 years (mean = 68 years) participated in the study. At diagnosis, 17 (85%) had a Gleason grade group 1, and three (15%) had a grade group 2 tumour. Overall, participants viewed prostate MRI as a valuable tool that accurately localizes and monitors prostate cancer over time, and they considered prostate MRI central to active surveillance monitoring. We identified five thematic categories related to MRI use: (1) the experiential aspects of undergoing an MRI scan; (2) the experience of visualizing one's own prostate and prostate cancer; (3) adequacy of provider explanations of MRI results; (4) confidence in prostate MRI in decision-making; and (5) the role of prostate MRI in longitudinal follow-up, including an interest in using MRI to modify the timing of, or replace, prostate biopsy. Conclusion: Patients value prostate MRI as a tool that enhances their confidence in the initial diagnosis and monitoring of prostate cancer. This work can inform future studies to optimize patient experience, education and counselling during active surveillance for prostate cancer.

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Foreign-born (first-generation) South Asians face a growing diet-related chronic disease burden. Little is known about whether the adult US-born (second-generation) children of South Asian immigrants can provide unique insights as changemakers in their parents’ dietary behaviors. This study aims to assess how second-generation South Asians describe and influence the dietary behaviors of their parents. Between October and November 2020, 32 second-generation South Asians [mean age 22.4 (SD 2.9), 53% female] participated in online interviews centered around factors involved in their (and their parents) eating behaviors. Thematic analysis revealed three types of parental dietary drivers (socioecological factors that impact the dietary choices of parents): goal-oriented (i.e., parents’ dietary intentionality), capacity-related (e.g., environmental barriers) and sociocultural (cultural familiarity, religion and traditions). Participants described three major mechanisms of influence: recommending new foods, cooking for parents, and bringing new foods home. These influences primarily occurred in the household and often involved participants leveraging their own nutritional knowledge and preferences to expand dietary diversity and healthier behaviors among their parents. Evidence suggests that second-generation South Asians may act as powerful agents of dietary change within their households and can provide novel insights to help address and overcome sociocultural, linguistic, and other structural barriers to better understanding and intervening in the health of the South Asian community.

Abstract

Context: Despite efforts to enhance equity, disparities in early palliative care (PC) access for historically minoritized patients with advanced breast cancer (ABC) persist. Insight into patient and clinician perspectives are needed to inform future models aimed at improving equity in PC access and outcomes. Objectives: To explore qualitative barriers and facilitators to early PC access in an urban setting with Black and Latina women with ABC. Methods: In this qualitative descriptive study, we conducted one-on-one interviews with Black and Latina women with ABC (N = 20) and interdisciplinary clinicians (N = 20) between February 2022 and February 2023. Participants were recruited from urban academic and community cancer clinics. Transcripts were analyzed using an inductive coding and thematic analysis approach. Results: Barriers identified by both patients and clinicians included lack of communication between oncology, PC, and primary care teams, limited understanding of PC among patients and non-PC clinicians, language and health literacy-related communication challenges, and racism and marginalization, including implicit bias and lack of diverse racial/ethnic representation in the supportive care workforce. Facilitators identified by both patients and clinicians included patient-to-patient referrals, support groups breaking cultural stigma on topics including self-advocacy and PC, referrals from trusted providers, and community organizations’ abilities to overcome challenges related to social determinants of health, most specifically logistical and financial support. Conclusions: Patients and clinicians reported similar barriers and facilitators to PC access, most commonly through the lens of care coordination and communication. These findings will inform future adaptation of a culturally and linguistically care model to improve access to early PC services for Black and Latina women with ABC.

Abstract

Objectives: This qualitative study explored experiences of 15 women in New York City who suffered physical, emotional, and socioeconomic consequences of severe maternal morbidity (SMM). This study aimed to increase our understanding of additional burdens these mothers faced during the postpartum period. Methods: Qualitative analysis of in-depth interviews (n = 15) with women who had given birth in NYC hospitals and experienced SMM. We focused on how experiences of SMM impacted postpartum recoveries. Grounded theory methodology informed analysis of participants’ one-on-one interviews. To understand the comprehensive experience of postpartum recovery after SMM, we drew on theories about social stigma, reproductive equity, and quality of care to shape constant-comparative analysis and data interpretation. Findings: Three themes were generated from data analysis: ‘Caring for my body’ defined by challenges during physical recuperation, ‘caring for my emotions’ which highlighted navigation of mental health recovery, and ‘caring for others’ defined by care work of infants and other children. Most participants identified as Black, Latinx and/or people of color, and reported the immense impacts of SMM across aspects of their lives while receiving limited access to resources and insufficient support from family and/or healthcare providers in addressing postpartum challenges. Conclusions for Practice: Findings confirm the importance of developing a comprehensive trauma-informed approaches to postpartum care as a means of addressing SMM consequences.

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Purpose: Utilizing a participatory approach, we sought to co-design a 12-week Green Activity Program (GAP) with Hispanic/Latino individuals living with memory challenges and their care partners, local outdoor professionals, and healthcare providers. Methods: Participants were recruited via convenience and snowball sampling in the Bronx, New York with Hispanic/Latino persons living with memory challenges and care partners, outdoor activity professionals, and interdisciplinary healthcare providers/dementia experts. Co-design occurred iteratively with 5 focus groups and 4 individual interviews lasting 30–90 min and focused on program and research design. Sessions were recorded and transcribed. Utilizing directed content analysis data was coded using a priori codes program design and research design. Results: 21 participants completed co-design activities: (n = 8 outdoor activity professionals, n = 6 Hispanic/Latino persons living with memory challenges and care partners, and n = 7 interdisciplinary healthcare providers/dementia experts). Participant preferences for program design were captured by subcodes session duration (30–90 min), frequency (4–8 sessions), and delivery modes (in-person and phone). Participants' preferred nature activities included group exercise and outdoor crafts [crocheting], outcomes of social participation, connectedness to nature, decreased loneliness, and stewardship were identified. Preferred language for recruiting and describing the program were “memory challenges,” “Hispanic/Latino,” and “wellbeing.” Referral pathways were identified including community-based organizations and primary care. Conclusion: Co-design was a successful form of engagement for people living with memory challenges that enabled participants to help design key elements of the GAP and research design. Our processes, findings, and recommendations for tailoring co-design to engage Hispanic/Latino people living with memory challenges can inform the development of other programs for this population.

Abstract

Objectives: As symptoms emerge and worsen in people living with dementia, their spouses can benefit from behavioral interventions to support their adjustment as a care partner. The Wish Outcome Obstacle Plan (WOOP) intervention improves the well-being of spouses of people living with dementia early in the disease course, but intervention mechanisms and opportunities for improvement are unclear. The present study gave voice to spouses who participated in a trial of WOOP, describing how WOOP was incorporated into their lives and how it could be improved for future implementation. Method: For this qualitative study, we conducted longitudinal semi-structured interviews among 21 spouses of people living with dementia (three interviews over three months; 63 interviews total). Codebook thematic analysis was performed. Results: Three meta-themes were derived: (1) assessing baseline strengths and limitations of WOOP, (2) learning from experience, and (3) fine-tuning and sustaining WOOP. Participants described how WOOP addressed their interpersonal and emotional stressors, their responses to behaviors of the person living with dementia, and their relationship quality. Considerations for future intervention delivery (e.g., solo vs. in group settings) and instructions (e.g., encouraging writing vs. thinking through the four steps of WOOP) were identified as areas of improvement. Conclusions: WOOP was described as a practical, feasible, and desirable intervention for spouses at the early stages of their partner's dementia. Participants made WOOP easier to incorporate in their everyday lives by adapting the design into a mental exercise that they used as needed. Suggestions from participants specified how to make the everyday use of WOOP more feasible, sustainable, and applicable in a variety of contexts. Trial Registration: ClinicalTrials.gov HIC 2000021852.

Abstract

Black and Hispanic adolescents in New York City experience high rates of pregnancy and sexually transmitted infections. A comprehensive understanding of the complexity of adolescent sexual health and family planning decisions and experiences can provide insights into the sustained disparities and inform practice, policy, and future research. The goal of this study was to explore and analyze this complexity, centering Black and Hispanic adolescent mothers as the experts on sexual and reproductive experiences from pre-pregnancy through parenting. As part of formative research for a human-centered design study, we interviewed 16 Black and Hispanic adolescent mothers living in New York City. Using situational analysis, we mapped relationships, discourse, and social structures to explore the various factors that inform adolescent sexual health decisions, in particular choices about contraception. Situational analysis found that, besides interpersonal factors, organizations and non-human elements like social media and physical birth control devices affected adolescent family planning in three social arenas: home, healthcare, and school. Within and across these arenas, adolescents lacked consistent sexual health education and contraceptive counseling and faced gendered expectations of their behaviors. Participants described parents and healthcare providers as most responsible for providing sexual health counseling yet described parents as uncomfortable or overreactive and healthcare workers as paternalistic and biased. A consideration of the many factors that inform sexual health decision-making and recognition of adolescents’ desire for parents and healthcare providers to be a source of education can address health disparities and promote adolescent sexual health and wellbeing.

Abstract

Aim(s): Organizational culture has been studied for over four decades among nurses, across countries and contexts. However, wide variation exists in how the concept has been defined and at what level of the organization it is measured. The aim of this study was to use a dimensional analysis to conduct a conceptual synthesis of unit culture from a nursing perspective. Design: Dimensional analysis, rooted in grounded theory methodology, was used to describe unit culture from a nursing perspective. Methods: A literature search was conducted in April 2022. Inclusion criteria were (1) peer review publications, (2) used the term ‘unit culture’ or ‘ward culture’, (3) references nurses' role in unit culture, (4) published in the last 20 years and (5) written in English. One hundred fifteen articles met inclusion criteria, but dimensional saturation was researched after coding 24 articles. Results: Findings were synthesized into four core dimensions and 10 subdimensions. Dimensions of unit culture included customs (practice norms, communication and prioritization), shared beliefs (assumptions, values and attitudes), hierarchy (social and informational) and atmosphere (emotional climate and collaboration). Conditions that shape unit culture include individual nurse characteristics, working conditions, unit policies/procedures and leadership. Unit culture impacts nurse work experiences and decision-making processes, which can affect outcomes including nurse wellbeing, practice behaviours and adherence to unit policies. Conclusions: Identifying the dimensions of unit culture helps to bring clarity to a concept that is not well defined in existing literature. Impact: This model of unit culture can be used to guide development of new instruments to measure unit culture or guide researchers in utilizing existing measures. Developing measures specific to unit culture are warranted to strengthen researchers' ability to assess how changing conditions of a unit (e.g. leadership, workload) changes unit culture and its related outcomes. Patient or Public Contribution: No Patient or Public Contribution.

Abstract

Moral distress and moral injury among health workers yield adverse physical, psychological, and labor force outcomes. Research is limited on how psychiatric health care assistants (PHAs) experience these issues. In this multimethod study, we conducted a quantitative survey and qualitative interviews to examine moral distress and injury among PHAs. Almost half screened positive for moral injury. Three qualitative themes emerged: 1) hierarchies prevent contributions to care; 2) trust as a factor in de-escalating patient violence; and 3) navigating psychosocial challenges. Further research is recommended to investigate how to best support and inform practice and policy changes for PHAs.

Abstract

Objectives: A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers. Method: A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables—caregiving competence, loneliness, caregiver burden, and depressive symptoms—were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]. Results: The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups. Conclusion: The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Abstract

Objective: This epigenomics sub-study embedded within a randomized controlled trial examined whether an evidenced-based behavioral intervention model that decreased stimulant use altered leukocyte DNA methylation (DNAm). Methods: Sexual minority men with HIV who use methamphetamine were randomized to a five-session positive affect intervention (n = 32) or an attention-control condition (n = 21), both delivered during three months of contingency management for stimulant abstinence. All participants exhibited sustained HIV virologic control – an HIV viral load less than 40 copies/mL at baseline and six months post-randomization. The Illumina EPIC BeadChip measured leukocyte methylation of cytosine-phosphate-guanosine (CpG) sites mapping onto five a priori candidate genes of interest (i.e., ADRB2, BDNF, FKBP5, NR3C1, OXTR). Functional DNAm pathways and soluble markers of immune dysfunction were secondary outcomes. Results: Compared to the attention-control condition, the positive affect intervention significantly decreased methylation of CpG sites on genes that regulate β2 adrenergic and oxytocin receptors. There was an inconsistent pattern for the direction of the intervention effects on methylation of CpG sites on genes for glucocorticoid receptors and brain-derived neurotrophic factor. Pathway analyses adjusting for the false discovery rate (padj < 0.05) revealed significant intervention-related alterations in DNAm of Reactome pathways corresponding to neural function as well as dopamine, glutamate, and serotonin release. Positive affect intervention effects on DNAm were accompanied by significant reductions in the self-reported frequency of stimulant use. Conclusions: There is an epigenetic signature of an evidence-based behavioral intervention model that reduced stimulant use, which will guide the identification of biomarkers for treatment responses.

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Retention in HIV care is a critical precursor to ending the epidemic yet remains suboptimal in the United States. Gaining an understanding of the challenges faced by adolescents and young adults (AYA) living with HIV is essential to improving retention in HIV care. This study explored the barriers and facilitators to retention in care among Black and Hispanic AYA living with HIV. Audio-recorded semi-structured interviews were conducted with 20 AYA living with HIV ages 16–29 years in New York City. Our methods entailed an inductive content analysis to explore key concepts, reconcile codes, and identify a theme, categories, and subcategories. Bronfenbrenner’s socioecological model evolved as an organizing framework around barriers and facilitators to retention in care at the individual, interpersonal, healthcare system, and structural level. Data analysis yielded one overarching theme—the influence of psychosocial factors on retention in HIV care. Psychological struggles, powerlessness, clinic-level characteristics, and socioeconomic struggles were barriers reported by participants. Self-responsibility, social support, patient-friendly healthcare services, and socioeconomic resources emerged as facilitators. Retention in HIV care among AYA living with HIV is a multifaceted and complex phenomenon that involves multiple systems. Strengthening patients, healthcare system, and community partnerships can help address some of the HIV-related health disparities.

Abstract

Objective: To qualitatively describe breastfeeding experiences among mothers who used galactagogues to increase their milk supply. Design: One-time, semistructured phone interviews. Setting: US. Participants: Breastfeeding mothers (n = 19) who reported ever consuming foods, beverages, or herbal supplements to increase their milk supply in a cross-sectional online survey were purposefully sampled to participate in this qualitative study. Participants were diverse in terms of race and ethnicity, education, income, infant age (0–18 months), and prior breastfeeding experience (32% first-time breastfeeding). Phenomenon of Interest: Reasons for trying to increase milk supply, sources of information about increasing milk supply, and strategies tried to increase milk supply. Analysis: Interviews were transcribed verbatim and analyzed using reflexive thematic analysis. Results: Participants expressed determination and commitment to breastfeeding but unexpectedly struggled to breastfeed and increase their milk supply. They sought information from multiple sources and used individualized approaches to address milk supply concerns on the basis of recommendations from others, as well as the perceived convenience, cost, palatability, and safety of potential strategies. Conclusions and Implications: Results suggest a need to expand breastfeeding education and support so that lactating parents anticipate common breastfeeding challenges and are aware of evidence-based strategies for increasing their milk supply.

Abstract

Purpose: The purpose of this study is to systematically review interventions that address food insecurity for persons with prediabetes or type 2 diabetes using the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. Methods: Six databases (OVIDMEDLINE, OVIDEMBASE, OVID APA PsycINFO, Web of Science, Cochrane Central Registry of Controlled Trials, and EBSCO CINAHL Complete) were searched through January 2023. Research team members independently performed screening of abstracts and full texts, data abstraction, and risk assessment. Results: In all, 3,139 unique citations were identified, and 20 studies met inclusion criteria. Interventions included medically tailored meals/groceries (n = 10) or produce prescriptions/vouchers (n = 10). Reach and effectiveness were the highest reported RE-AIM elements. Interventions reached a high-risk population via food banks, community-based outreach, and federally qualified health centers. A majority of participants identified as female, Black, or Hispanic/Latinx and were living below the federal poverty level. Most studies reported at least 1 diabetes outcome (ie, A1C, hypoglycemia, diabetes distress, diabetes self-management). Seventeen studies reported impact on A1C, with the majority reporting a decrease in A1C and 53% (9/17) of studies demonstrating a decrease over time. Self-management improved in 50% (3/6) of studies that evaluated this outcome. Self-efficacy improved in 40% (2/5) of studies, and improvements were seen in depressive symptoms/diabetes distress (4/7 studies) and quality of life (5/5 studies). Seven studies reported statistically significant improvements in food insecurity. Conclusion: Food insecurity has been associated with higher risks and adverse clinical outcomes in adults with diabetes. Implementing interventions that address food insecurity among adults with or at risk for diabetes can enhance food security and clinically important diabetes-related outcomes. Additional research dedicated to the sustainability of interventions is needed.

Abstract

School connectedness is the degree to which students experience acceptance, inclusion, and care by school personnel and peers. A sense of belonging incorporates an emotional connection to the community. School connectedness and belonging are protective factors that promote student engagement, accomplishment, and community performance. Despite the rise in students from immigrant families in the United States, belonging and connectedness for youth from diverse cultural and linguistic experiences are understudied. School-based nurses, our term, is inclusive of advanced practice pediatric, family, and psychiatric nurse practitioners, are well-positioned to support school connectedness for youth who may encounter hurdles to health care because of cultural and linguistic differences. We present practice suggestions for language, culture, and inclusion using three health conditions experienced by youth: anxiety, asthma, and obesity. School-based nurses and other school personnel who provide linguistic and culturally appropriate care can support students in feeling connected and included in their school communities.

Abstract

Background: Previous findings related to the association of adverse pregnancy outcomes with anorexia nervosa are mixed. Objective: This study aimed to investigate the association of adverse live-born pregnancy outcomes with anorexia nervosa using adjustment modeling accounting for confounding factors, and a mediation analysis addressing the contribution of underweight prepregnancy body mass index and gestational weight gain to those outcomes. Study Design: The sample included California live-born singletons with births between 2007 and 2021. The administrative data set contained birth certificates linked to hospital discharge records. Anorexia nervosa diagnosis during pregnancy was obtained from International Classification of Diseases codes on hospital discharge records. Adverse pregnancy outcomes examined included gestational diabetes, gestational hypertension, preeclampsia, anemia, antepartum hemorrhage, premature rupture of membranes, premature labor, cesarean delivery, oligohydramnios, placenta previa, chorioamnionitis, placental abruption, severe maternal morbidity, small for gestational age, large for gestational age, low birthweight, and preterm birth (by timing and indication). Risk of each adverse outcome was calculated using Poisson regression models. Unadjusted risk of each adverse outcome was calculated, and then the risks were adjusted for demographic factors. The final adjusted model included demographic factors, anxiety, depression, substance use, and smoking. A mediation analysis was performed to estimate the excess risk of adverse outcomes mediated by underweight prepregnancy body mass index and gestational weight gain below the American College of Obstetricians and Gynecologists recommendation. Results: The sample included 241 pregnant people with a diagnosis of anorexia nervosa and 6,418,236 pregnant people without an eating disorder diagnosis. An anorexia nervosa diagnosis during pregnancy was associated with many adverse pregnancy outcomes in unadjusted models (relative risks ranged from 1.65 [preeclampsia] to 3.56 [antepartum hemorrhage]) in comparison with people without an eating disorder diagnosis. In the final adjusted models, birthing people with an anorexia nervosa diagnosis were more likely to have anemia, preterm labor, oligohydramnios, severe maternal morbidity, a small for gestational age or low-birthweight infant, and preterm birth between 32 and 36 weeks with spontaneous preterm labor (adjusted relative risks ranged from 1.43 to 2.55). Underweight prepregnancy body mass index mediated 7.78% of the excess in preterm births and 18.00% of the excess in small for gestational age infants. Gestational weight gain below the recommendation mediated 38.89% of the excess in preterm births and 40.44% of the excess in low-birthweight infants. Conclusion: Anorexia nervosa diagnosis during pregnancy was associated with a number of clinically important adverse pregnancy outcomes in comparison with people without an eating disorder diagnosis. Adjusting for anxiety, depression, substance use, and smoking during pregnancy decreased this risk. A substantial percentage of the excess risk of adverse outcomes was mediated by an underweight prepregnancy body mass index, and an even larger proportion of excess risk was mediated by gestational weight gain below the recommendation. This information is important for clinicians to consider when caring for patients with anorexia nervosa. Considering and treating anorexia nervosa and comorbid conditions and counseling patients about mediating factors such as preconception weight and gestational weight gain may improve live-born pregnancy outcomes among people with anorexia nervosa.

Abstract

This report highlights the 2023-2028 American Association of Nurse Practitioners Research Agenda (AANP-RA), which focuses on the research goals of AANP as an organization and is based on its mission and strategic plan. The purpose of the AANP Research Agenda is to outline research priorities that advance the AANP Strategic Plan and concurrently address gaps in nursing science. American Association of Nurse Practitioners supports research studies that are rigorously designed and conducted using quantitative, qualitative, and mixed-methods approaches, as well as implementation science with the potential to positively impact both NP practice and patient health outcomes. The AANP-RA strategy is guided by the PEARL acronym: examining NP Practice, Education, policy Advocacy, Research, and Leadership. A discussion of each area is presented along with suggested topics.

Abstract

The purpose of this article was to analyze the concept of "the fighter in the intensive care unit (ICU)" per the scientific literature and the impact this mentality has on care administered in the ICU. A literature review and a concept analysis based on Rodger's evolutionary method were performed to identify surrogate terms, antecedents, attributes, and consequences pertaining to the "fighter" in the ICU. Thirteen articles with a focus on "the fighter" were included in this analysis. There is a strong desire to remain optimistic and maintain high spirits as a coping mechanism in the face of extreme prognostic uncertainty. Themes that emerged from the literature were the need to find inner strength and persist in the face of adversity. The concept of "the fighter in the ICU" can serve as either adaptive or maladaptive coping, depending on the larger clinical picture. Patient experiences in the ICU are fraught with physical and psychological distress. How the patient and family unit cope during this anxiety-provoking time is based on the individual. Maintaining optimism and identifying as a fighter can be healthy ways to adapt to the circumstances. This concept analysis highlights the importance of holistic care and instilling hope particularly as patients may be nearing the end of life.

Abstract

The purpose of this article was to analyze the concept of "the fighter in the intensive care unit (ICU)"per the scientific literature and the impact this mentality has on care administered in the ICU. A literature review and a concept analysis based on Rodger's evolutionary method were performed to identify surrogate terms, antecedents, attributes, and consequences pertaining to the "fighter"in the ICU. Thirteen articles with a focus on "the fighter"were included in this analysis. There is a strong desire to remain optimistic and maintain high spirits as a coping mechanism in the face of extreme prognostic uncertainty. Themes that emerged from the literature were the need to find inner strength and persist in the face of adversity. The concept of "the fighter in the ICU"can serve as either adaptive or maladaptive coping, depending on the larger clinical picture. Patient experiences in the ICU are fraught with physical and psychological distress. How the patient and family unit cope during this anxiety-provoking time is based on the individual. Maintaining optimism and identifying as a fighter can be healthy ways to adapt to the circumstances. This concept analysis highlights the importance of holistic care and instilling hope particularly as patients may be nearing the end of life.

Abstract

Editor's note: This is the 21st article in a series on clinical research by nurses. The series is designed to be used as a resource for nurses to understand the concepts and principles essential to research. Each column will present the concepts that underpin evidence-based practice - from research design to data interpretation. To see all the articles in the series, go to https://links.lww.com/AJN/A204.

Abstract

Oral squamous cell carcinoma (OSCC) biomarker studies rarely employ multi-omic biomarker strategies and pertinent clinicopathologic characteristics to predict mortality. In this study we determine for the first time a combined epigenetic, gene expression, and histology signature that differentiates between patients with different tobacco use history (heavy tobacco use with ≥10 pack years vs. no tobacco use). Using The Cancer Genome Atlas (TCGA) cohort (n = 257) and an internal cohort (n = 40), we identify 3 epigenetic markers (GPR15, GNG12, GDNF) and 13 expression markers (IGHA2, SCG5, RPL3L, NTRK1, CD96, BMP6, TFPI2, EFEMP2, RYR3, DMTN, GPD2, BAALC, and FMO3), which are dysregulated in OSCC patients who were never smokers vs. those who have a ≥ 10 pack year history. While mortality risk prediction based on smoking status and clinicopathologic covariates alone is inaccurate (c-statistic = 0.57), the combined epigenetic/expression and histologic signature has a c-statistic = 0.9409 in predicting 5-year mortality in OSCC patients.

Abstract

INTRODUCTION: Clinical research in Alzheimer's disease (AD) lacks cohort diversity despite being a global health crisis. The Asian Cohort for Alzheimer's Disease (ACAD) was formed to address underrepresentation of Asians in research, and limited understanding of how genetics and non-genetic/lifestyle factors impact this multi-ethnic population. METHODS: The ACAD started fully recruiting in October 2021 with one central coordination site, eight recruitment sites, and two analysis sites. We developed a comprehensive study protocol for outreach and recruitment, an extensive data collection packet, and a centralized data management system, in English, Chinese, Korean, and Vietnamese. RESULTS: ACAD has recruited 606 participants with an additional 900 expressing interest in enrollment since program inception. DISCUSSION: ACAD's traction indicates the feasibility of recruiting Asians for clinical research to enhance understanding of AD risk factors. ACAD will recruit > 5000 participants to identify genetic and non-genetic/lifestyle AD risk factors, establish blood biomarker levels for AD diagnosis, and facilitate clinical trial readiness. HIGHLIGHTS: The Asian Cohort for Alzheimer's Disease (ACAD) promotes awareness of under-investment in clinical research for Asians. We are recruiting Asian Americans and Canadians for novel insights into Alzheimer's disease. We describe culturally appropriate recruitment strategies and data collection protocol. ACAD addresses challenges of recruitment from heterogeneous Asian subcommunities. We aim to implement a successful recruitment program that enrolls across three Asian subcommunities.