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Informed consent is crucial for participant understanding, engagement, and partnering for research. However, current written informed consents have significant limitations, particularly for complex topics such as genomics and biobanking. Our goal was to identify how participants visually conceptualize terminology used in genomics and biobanking research studies, which might provide a novel approach for informed consent. An online convenience sample was used from May to July 2020 to collect data. Participants were asked to draw 10 randomly chosen words out of 32 possible words commonly used in consent forms for genomics and biobanking research. An electronic application captured drawings that were downloaded into a qualitative software program for analysis. A total of 739 drawings by 269 participants were captured. Participants were mostly female (61.3%), eight different race/ethnicities were represented (15.6% Black, 13.8% Hispanic), and most had some college education (68.8%). Some words had consistent visual themes such as different types of risky activities for risk or consistent specific images such as a double helix for DNA. Several words were frequently misunderstood (e.g., ascend for assent), while others returned few submissions (e.g., phenotype or whole genome sequencing). We found that although some words used in genomics and biobanking research were visually conceptualized in a common fashion, but misunderstood or less well-known words had no, few, or mistaken drawings. Future research can explore the incorporation of visual images to improve participant comprehension during consent processes, and how to utilize visual imagery to address more challenging concepts.

Background and Objectives A legacy of values (e.g., legacy letter) is a nonlegal way to intentionally communicate intangible assets (e.g., values, life lessons, and emotional and supportive instruction) with others. There is scant research on legacy creation outside of a palliative care context, and no studies have explored the experiences of community-dwelling older adults creating a legacy of values. Research Design and Methods As part of an exploratory sequential mixed methods study, we conducted semistructured interviews with older adults (N = 16) who had previously created a legacy of values. We analyzed transcribed interviews using an interpretive descriptive approach. We iteratively coded interviews deductively with sensitizing concepts identified in the literature (existential well-being, end-of-life preparation and completion, generativity, and resilience), and inductively, based on participants’ descriptions. Codes were categorized by patterns of motivations, content, outcomes, and meaning, and thematically summarized. Results We conceptualized the overall experience of creating a legacy of values as Preparing for the Future While Living in the Present and identified 4 themes: Preserving the Intangible for You and for Me, Sharing What I Want You to Know, Obtaining Peace through Reflection and Preparation, and Living into a Continuing Legacy. Participants attained peace, realized their life was not complete, and were challenged to live intentionally through legacy creation. Discussion and Implications Creating a legacy of values may concurrently prepare older adults for the end of life and the remainder of life. These findings offer insight into a generative act that can promote intentional living among older adults.

Human activity is changing global environments at an unprecedented rate, imposing new ecological and evolutionary ramifications on wildlife dynamics, including host–parasite interactions. Here we investigate how an emerging concern of modern human activity, pharmaceutical pollution, influences the spread of disease in a population, using the water flea Daphnia magna and the bacterial pathogen Pasteuria ramosa as a model system. We found that exposure to different concentrations of fluoxetine—a widely prescribed psychoactive drug and widespread contaminant of aquatic ecosystems—affected the severity of disease experienced by an individual in a non-monotonic manner. The direction and magnitude of any effect, however, varied with both the infection outcome measured and the genotype of the pathogen. By contrast, the characteristics of unexposed animals, and thus the growth and density of susceptible hosts, were robust to fluoxetine. Using our data to parameterize an epidemiological model, we show that fluoxetine is unlikely to lead to a net increase or decrease in the likelihood of an infectious disease outbreak, as measured by a pathogen's transmission rate or basic reproductive number. Instead, any given pathogen genotype may experience a twofold change in likely fitness, but often in opposing directions. Our study demonstrates that changes in pharmaceutical pollution give rise to complex genotype-by-environment interactions in its influence of disease dynamics, with repercussions on pathogen genetic diversity and evolution. This article is part of the theme issue ‘Infectious disease ecology and evolution in a changing world’.

To develop and test an assessment measuring extended physiological proprioception (EPP). EPP is a learned skill that allows one to extend proprioception to an external tool, which is important for controlling prosthetic devices. The current study examines the ability of this assessment to measure EPP in a nonamputee population for translation into the affected population.Measuring precision and accuracy of an upper extremity (UE) proprioceptive targeting task assessment. Participants completed 2 sessions of a targeting task while seated at a table. The targeting was completed with the dominant and nondominant hand and with eyes open and eyes closed during the task. Participants completed 2 sessions of the clinical test with a 1-week washout period to simulate reasonable time between clinical visits.Research laboratory.Twenty right-handed participants (N=20) with no neurologic or orthopedic deficits that would interfere with proprioception, median age of 25 years (range, 19-33 years), completed the assessment (10 men, 10 women).Not applicable.Precision (consistency in targeting) and accuracy (distance between the intended target and participant result) in UE targeting task using EPP; test-retest repeatability between sessions.Both precision and accuracy were significantly decreased in the eyes-closed condition compared with the eyes-open condition regardless of targeting with dominant or nondominant hand (allThe results of this study support the feasibility of using this assessment to measure EPP-based on the definition of EPP as a learned skill that indicates control over an external, simple tool-because they demonstrate reliance on proprioception in the eyes-closed condition, symmetry in proprioceptive accuracy between hands for within-participant control, and test-retest reliability for longitudinal measurements. The results also establish normative values for this assessment in young, healthy adults. Further research is required in a clinical population to evaluate the UE proprioceptive targeting task assessment further and collect objective data on EPP.

OBJECTIVE: Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. DESIGN: Randomized wait-list control. SETTING/SUBJECTS: Assisted living and nursing home residents in the United States, and their family members and caregivers. MEASUREMENTS: Five EOL treatment preferences (cardiopulmonary resuscitation or CPR, breathing machine, tube feeding, life support, and pain treatment) and four near EOL psychosocial preferences (having family at the bedside, engaging in faith practices such as prayer, having a pet at bedside, and engaging in activities such as being read to or listening to music) extracted from residents' videos and captured through family and staff surveys. RESULTS: Thirty-six resident videos were shared with family (N = 50) and staff (N = 38) during care plan meetings. Concordance between residents' stated EOL treatment preferences and family and staff knowledge improved, with results showing a treatment effect at time of sharing the video (family: Beta = 0.21, p

Expanded carrier screening (ECS) is increasingly offered to a broader population and raises challenges of how to best educate and counsel the volume of screened individuals. For this study, we compared three educational tools (brochure, video and comic) about ECS on knowledge and decision making. A convenience online sample of 151 pregnant women was randomized to one of three groups (Video, n = 42; Comic n = 54; Brochure n = 55). Knowledge scores were significantly higher for the comic group compared to the video or the brochure groups (p < .001). No significant differences in preparation for decision making, decisional conflict, or perceptions of shared decision making were identified between the study groups. This study suggests that a comic about ECS may improve patient attention and retention of information. The use of graphic narratives may enable individuals to better understand medical information in general.

Midwifery and nursing are collaborative partners in both education and practice. Understanding needs and barriers to clinical services such as newborn screening is essential. This study examined knowledge and attitudes of midwives and out-of-hospital-birth parents about newborn blood spot screening (NBS). Descriptive and cross-sectional surveys were distributed to midwives and out-of-hospital-birth patients from birth center registries and the Utah Health Department of Vital Records. Seventeen midwife surveys (response rate: 17%) and 113 parent surveys (response rate: 31%) were returned. Most midwives and out-of-hospital-birth parents reported satisfactory knowledge scores about NBS. Only 5% of parents (n = 6) did not participate in NBS. Most midwives reported that NBS is important and encouraged patients to consider undergoing NBS. Some concerns included the lack of education for both midwives and out-of-hospital patients and the trauma and accuracy of the heel prick soon after birth. Both midwives and out-of-hospital-birth parents expressed a need for improved NBS education. Additional studies are needed to ascertain whether this trend is seen with similar populations throughout the United States, to further elucidate the factors that drive NBS nonparticipation, and to develop educational resources for midwives and their patients.

Obtaining informed consent for bloodspot research from newborn screening is particularly challenging due to the hectic environment of the postnatal period and the relatively abstract nature of future, unspecified research on the biospecimens. A randomized controlled trial was conducted in three Michigan hospitals to compare two different consent processes (video and interactive tablet “app”) with standard brochure-based consent in the Michigan BioTrust for Health. Results indicated higher knowledge scores for the video and app groups as well as significantly higher scores on satisfaction, amount of information, and clarity with the information provided. More research is needed to find the right amount of information for informed decision-making, and additional feasibility studies are needed to assess implementation strategies.

We evaluated the relationship between grief preparedness and grief experience in 106 family caregivers anticipating or who had experienced the death of a family member with dementia. Using a phenomenological lens to discern a process of meaning-making in narratives, we found preparation that included positive construction of memories, death as the end of suffering, relationship resolution, and shared construction of meaning were associated with positive grief. Those caregivers who experienced the family member's decline as traumatic, caregiver role loss, unavailable support, and difficulties creating a new life reported inadequate death preparation, and difficulty making meaning of the illness and death.

Pharmaceutical pollutants pose a threat to aquatic ecosystems worldwide. Yet, few studies have considered the interaction between pharmaceuticals and other chronic stressors contemporaneously, even though the environmental challenges confronting animals in the wild seldom, if ever, occur in isolation. Thermal stress is one such environmental challenge that may modify the threat of pharmaceutical pollutants. Accordingly, we investigated how fluoxetine (Prozac), a common psychotherapeutic and widespread pollutant, interacts with temperature to affect life-history traits in the water flea, Daphnia magna . We chronically exposed two genotypes of Daphnia to two ecological relevant concentrations of fluoxetine (30 ng l −1 and 300 ng l −1 ) and a concentration representing levels used in acute toxicity tests (3000 ng l −1 ) and quantified the change in phenotypic trajectories at two temperatures (20°C and 25°C). Across multiple life-history traits, we found that fluoxetine exposure impacted the fecundity, body size and intrinsic growth rate of Daphnia in a non-monotonic manner at 20°C, and often in genotypic-specific ways. At 25°C, however, the life-history phenotypes of individuals converged under the widely varying levels of fluoxetine, irrespective of genotype. Our study underscores the importance of considering the complexity of interactions that can occur in the wild when assessing the effects of chemical pollutants on life-history traits.

Creating a legacy of values (e.g., legacy letter) is a way to promote generativity by communicating emotional and supportive instruction (e.g., values, life lessons) to others. This study aimed to a) understand the process of how older adults create a legacy of values, b) identify contextual factors surrounding creation, and c) describe older adults’ experiences of creation. We recruited community-dwelling older adults who had previously created a legacy of values to participate in semi-structured interviews. Interpretive description guided data collection and analysis. We initially coded the transcripts deductively, based on the literature, and inductively; data were organized into categories (i.e., by contextual factors and process steps) and analyzed using constant comparison to identify patterns. Participants (n=16) had a mean age of 72.3 years (SD=5.8, range=65-83), most were female (n=14), and all had children and identified as non-Hispanic White. Motivations for creation included aging, transitions, or events (e.g., travel). Participants tailored the contents (e.g., life lessons) and format to recipients, revised their legacy of values over time, and recommended the process to others. The creation process was non-linear, iterative, and influenced by participants’ personal and familial contextual factors. Synthesis of these findings resulted in developing the Process Model for Creating a Legacy of Values, which depicts the iterative and interconnected nature of the content, process, and experience of creating a legacy of values. Our findings indicate older adults are seeking resources to create their legacy of values in a self-directed way, and that it is an acceptable, accessible, and relevant process.

Despite decades of research into patient falls, there is a dearth of evidence about how the design of patient rooms influences falls. Our multi-year study aims to better understand how patient room design can increase stability during ambulation, serving as a fall protection strategy for frail and/or elderly patients. The aim of this portion of the study was to ascertain the architect’s perspective on designing a room to mitigate the risk of falls, as well as to evaluate the face validity of a predictive algorithm to assess risk in room design using the input of a design advisory council (AC). The purpose of this paper is to provide insight into the design process and decision-making for patient rooms, summarize the impressions of industry experts about the configurations and layout of the patient rooms tested in a preliminary augmented reality model, establish the face validity of modeled heat maps depicting risk, and report the results of a pre-meeting and post-meeting survey of expert opinions. Feedback was coded using human factors/ergonomic (HF/E) design principles, and the findings will be used to guide further development of an “optimal” prototype room for human subject testing. The results confirm the challenges that architects face as they balance competing priorities and reveal how a participatory process focusing on preventing falls can shift assumptions about design strategies, especially subtle changes (e.g., toilet orientation).

Background Precision medicine research depends upon recruiting large and diverse participant cohorts to provide genetic, environmental, and lifestyle data. How prospective participants react to information about this research, including depictions of uncertainty, is not well understood. Purpose The current study examined public responses to precision medicine research, focusing on reactions toward (a) uncertainty about the scientific impact of sharing data for research, and (b) uncertainty about the privacy, security, or intended uses of participant data. Methods U.S. adults (N = 674; 51.9% male; 50% non-Hispanic white; Mage = 42.23) participated in an online experimental survey. Participants read a manipulated news article about precision medicine research that conveyed either certainty or uncertainty of each type (scientific, data). Participants then rated their attitudes toward the research, trust in the researchers, and willingness to join a cohort. We tested direct and mediated paths between message condition and outcomes and examined individual characteristics as moderators. Results Overall attitudes were positive and a majority of participants (65%) reported being somewhat or very likely to participate in precision medicine research if invited. Conveying uncertainty of either type had no overall main effect on outcomes. Instead, those who reported perceiving greater uncertainty had lower attitudes, trust, and willingness to join, while those with more tolerance for uncertainty, support for science, and scientific understanding responded favorably to the scientific uncertainty disclosure. Conclusions Findings suggest responses to precision medicine research uncertainty are nuanced and that successful cohort enrollment may be well-supported by a transparent approach to communicating with prospective participants.

This study examined the psychometric properties of the Screener for Intensifying Community Referrals for Health (SINCERE), a 10-item, low literacy screening tool developed to elicit social needs (e.g., transportation, housing) impacting patients’ ability to engage in health-related activities. Patients seeking care in a tertiary care emergency department (ED) were invited to complete the SINCERE as part of registration processes, and were asked about their desire for follow-up by a partnering service provider offering low- and no-cost community resource referrals. A total of 5,081 patients completed screenings were included in this sample. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) identified and verified one-factor structure, suggesting that the SINCERE’s 10-items are homogenous and measure one construct. The reliability of Cronbach’s α and McDonald’s ω were 0.89. Item Response Theory (IRT) suggested the SINCERE can effectively identify patients wishing referrals, or who have social needs. Moreover, patients who had two or more social needs were those willing to receive referrals after discharge. The SINCERE is a valid and reliable tool for measuring social needs for health, and should be considered as a screening option for practice interventions seeking to address social needs.

Particulate matter (PM) has demonstrably increased rates of cardiovascular and respiratory related disease; thus, a low-cost sensor that accurately measures PM is desirable including for smaller and more private environments such as residential homes. The low-cost Dylos and the Utah Modified Dylos Sensor (UMDS) have been shown to be highly correlated with references instruments for measuring particle counts and aerosol concentrations, which makes them useful tools for air quality studies. An analytical calibration equation (calibration) is used to describe the linear relationship between the UMDS and a reference instrument, providing the best estimate of PM concentrations when the UMDS is operated. In this study, an investigation of measurement variation of a UMDS was performed using a low-cost calibration technique to determine differences between the brand new UMDS pre-calibration equation (Pre(c)), a contaminated UMDS post-calibration equation (Post(c)), and a cleaned UMDS clean calibration equation (CC). The UMDS were calibrated against a high-grade aerosol spectrometer (Grimm model 1.109) as a reference instrument. Calibrations took place in a home or office environment. Counts per volume units from the UMDS were matched to the Grimm’s for comparison. The investigation of the UMDS for measurement variation was performed for the approximate estimates of PM(2.5) by using the small bin (i.e. ≥0.50μm) subtracted from the large bin (i.e. ≥2.5μm), and for total particulates by using the large bin. Linear regressions were performed between the UMDS and the Grimm per calibration event, which produced R(2) values and slopes that were indicative of measurement variation. Data exceeding the upper limit of quantification (ULOQ) of 106,000 particles/liter and the lower limit of quantification (LLOQ) of 4 particles/liter were excluded from statistical comparison. R(2) values greater or equal to 0.70 were used to assess measurement variation as a quality control standard for valid comparisons. A rank sum statistical test between calibration comparisons was performed. Pre(c)/Post(c) and Pre(c)/CC had significant differences indicating measurement variation. Post(c)/CC did not have any significant differences; cleaning the UMDS had no effect and did not demonstrate measurement variation. Reasons for measurement variation may include instrument contamination (dust/dirt), hardware degradation, altered fan flow rates, and potentially inadequate cleaning of the UMDS. Future work may investigate the rate of measurement variation in order to develop a recommended re-calibration schedule in order to maintain the most accurate estimates of PM for UMDS in long-term operation.

10613 Background: Patients with paraganglioma/pheochromocytoma (PPGL) or hereditary predisposition to PPGL often need screening with biochemical labs, imaging and physical exam. Given the rarity of PPGL and hereditary PPGL, care is often provided through specialty centers. Subsequently, patients may have experienced restrictions on travel and delayed scheduling of non-elective procedures due to COVID-19. This study aimed to analyze the impact of COVID-19 on seeking PPGL management. Methods: Patients with a personal history of PPGL or hereditary PPGL risk from the University of Michigan, Brigham Women’s Hospital, and Huntsman Cancer Institute were sent a survey in 2021. The survey included questions regarding tumor history (Y/N), gene status, demographics, and experience with COVID. The survey assessed whether they missed any exams related to PPGL diagnosis or screening. Comparative analyses utilized regression and chi-square tests. Patient factors measured in analyses evaluated COVID surveillance (labs, imaging, doctor visit) as the primary outcome and age, institution, gene status, sex, and PPGL history as predicting variables. Results: In total, 241 respondents across three institutions completed the survey. The cohort was primarily female (n = 158, 65.6%). A majority of the cohort identified as White (n = 222, 92%) and non-Hispanic (n = 226, 93.8%). PPGL history was reported in 158 patients (65.6%), 43 of which were pheochromocytoma and 113 were paraganglioma, primarily in the head and neck (n = 78). At time of survey completion, 209 (87%) respondents answered COVID-related questions. Thirty-nine respondents (19.2%) reported missing doctor visits, while 31 (15.3%) report missing HPPGL imaging and 33 (16.3%) report missing lab tests. There were no differences by institution (p > 0.05) on patient reported missed visits. Logistic regression analysis showed no difference in missing visits based on having a hereditary PPGL predisposition gene or sex of respondent (all p-values > 0.05). There was no difference based on PPGL history, though it is unknown if patients missed PGL follow-up or screening. Individuals who missed imaging (Y/N) were more likely to report missing their lab tests (OR = 1.8, p < 0.01) and doctor visit (OR = 1.25, p < 0.01). Age was a significant predictor for missing doctor visits (p = 0.02) with an odds ratio of 1.002 per 1 year increase in age. Conclusions: Though institutions had different COVID-19 restrictions and guidelines by state, there was no difference on missing surveillance or screening. Over 15% of respondents reported missing at least one aspect of PPGL care, indicating a need to re-engage those with PPGL and hereditary PPGL to return to typical screening and surveillance. Patients who miss one aspect of surveillance are likely to have missed other aspects of surveillance and will require evaluation of all aspects of screening to return up to date on needed visits and procedures.

5061 Background: Expanded germline genetic testing recommendations for individuals with prostate cancer (PCa) have resulted in increased demand for pre-test genetic education. As a result, alternative service delivery models in genetic counseling (GC) have been suggested. Previous research has shown no difference in genetic testing uptake when video genetic education (VGE) is used rather than face-to-face counseling. However, data is limited when evaluating how VGE is delivered to patients. This study aimed to evaluate the impact of pre-test VGE on genetic testing uptake when facilitated by a GC assistant or self-completed by the patient. Methods: PCa patients referred for GC were contacted for pre-test VGE. Patients were randomized to undergo VGE with a GC assistant via Zoom (assistant-led) or perform VGE on their own via email instructions (patient-led). Assistant-led VGE was scheduled via standard of care, and patient-led VGE involved electronic and phone contact. In both arms, pre-test VGE included administrating family history collection via electronic software and viewing of informational genetics video. VGE completion and genetic testing uptake was the primary outcome measured for all participants. Initial pilot data was presented previously. This analysis represents the entire study period outcome. Data analysis used t-test, Fisher’s exact and chi square. Results: From 10/1/2020-12/31/2021, 266 PCa patients were referred. In total, 254 were randomized, with 130 in the assistant-led intervention and 124 randomized to the patient-led arm. Technological limitations, loss to follow up, and procedural withdrawals resulted in 41 (31.5%) patients in the assistant-led arm and 65 (52.4%) in the self-led arm. The primary reason for discontinuing the process was lack of patient response to contact to schedule their genetics visit (n = 109, 35 patient-led, 74 assistant-led). There was significantly more loss to follow up in the assistant-led arm versus the self-led arm (p < 0.001). Of those who completed VGE, the median age was 66 years, with no difference between the two arms (p = 0.66). Participants primary identified as white (n = 96, 91%) and non-Hispanic (n = 100, 94%). There was no difference in uptake of genetic testing (p = 0.09) between patient and assistant led VGE. Conclusions: A randomized intervention suggests no difference in genetic testing uptake when pre-test VGE occurs with an assistant or is patient-led. Analyses of satisfaction, decision conflict, and knowledge are needed to evaluate if patient-led VGE is a suitable alternative to GC. Loss to follow up given standard of care scheduling approaches for assistant-led VGE suggests pre-test VGE may be better delivered during oncology visits. Additional evaluation of the facilitators and barriers, in addition to larger multi-center studies, are required to consider patient-led pre-test VGE as a primary method of pre-testing genetic education.

Purpose and objectives Emergency departments see a disproportionate share of low-income and uninsured patients. We developed and evaluated a process for identifying social needs among emergency department patients, for facilitating access to community-based resources, and for integrating clinical and community-based data. Intervention approach We leveraged an academic-community partnership to develop a social needs screening tool and referral process. Evaluation methods In a 25-day feasibility trial incorporating rapid improvement cycles, emergency department staff screened 210 patients for social needs. Observational and interview notes were analyzed, and data were linked from patient screenings, the United Way of Salt Lake 2-1-1 consumer information system, and electronic health records. Results Domains uncovered during pilot testing included screening based on appearance or insurance; discomfort asking stigmatizing questions; and lack of clarity regarding the screening's purpose. During the trial, 61% (n = 129) of patients reported 1 or more need, 52% (n = 67) of whom wanted follow-up. Of the 65 patients with complete data who wanted referrals, 49% (n = 32) were ultimately reached by 2-1-1, which provided an average of 4 community referrals (eg, pharmacy programs, utility assistance). Service usage 3 months before versus 3 months after emergency department index dates demonstrated that patients with social needs experienced a significant increase in emergency department use compared with those without needs (1.07 vs 1.36, P = .03), while patients with no needs experienced increases in primary care visits compared with those patients with unmet needs (0.24 vs 0.56, P = .03). Implications for public health We demonstrated the ability to systematically screen and refer for emergency department patients' unmet social needs by using existing resources and to link screening results, service referral details, and health service data. However, our experiences demonstrate that widespread implementation efforts should thoughtfully address staff perceptions and patient communication challenges.

BACKGROUND Women are at risk of mood disturbance during treatment for breast cancer. OBJECTIVE The aims of this study were to identify classes of women experiencing similar trajectories of depressed mood and anxiety while receiving chemotherapy for breast cancer and to determine associated antecedents and outcomes. The specific aims were to (1) determine the distinct trajectory classes associated with severity of depressed mood and anxiety reported by women undergoing cycles 2 and 3 of chemotherapy for breast cancer, (2) determine if class membership is associated with various antecedent variables, and (3) determine if class membership is associated with days of missed work and hours spent lying down. METHODS In a secondary analysis, classes were identified using Latent Growth Mixture Modeling. Antecedents and outcomes related to class membership were explored. RESULTS Participants (n = 166; mean age, 53 [SD, 10.8] years) were mostly white (91.46%); half had early-stage disease. Two trajectories of depressed mood and anxiety were identified. Receipt of doxorubicin was associated with the higher severity class for depressed mood (P < .01) and anxiety (P = .04). No college education (P = .03) or spending more hours lying down (P = .03) was associated with the higher severity class for anxiety. CONCLUSIONS Distinct trajectories of mood disturbance are distinguished by baseline severity. Further study is needed to determine if biologic or genomic factors are associated with class membership. IMPLICATIONS FOR PRACTICE Identification of women at risk of mood disturbance may allow clinicians to intensify symptom management. Mood disturbance early in the treatment trajectory warrants management to improve outcomes.

Purpose This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study. Study Design Participants were recruited from an obstetric clinic of an academic urban medical center and randomized (n = 73) to one of two study groups: the control group (n = 39) that used a brochure or the intervention group (n = 34) that also used a game decision aid. Result Participants who played the game had higher knowledge scores (m = 21.41, standard deviation [SD] = 1.74) than participants in the control group (m = 19.59; SD = 3.31), p = 0.004. The median time of game playing was 6:43 minutes (range: 2:17–16:44). The groups were similar in frequency of completing screening after the study, control = 6 (15%) versus intervention = 11 (32%), p = 0.087. However, the more interaction with the game resulted in more positive attitudes toward screening. Conclusion The addition of a game decision aid was effective in educating pregnant women about prenatal screening. As other genetic testing decisions continue to increase within clinical care, game-based decision tools may be a constructive method of informed decision-making.

OBJECTIVE This study assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, and attitudes toward harm and privacy among the medical and undergraduate students, faculty, and the public in the Intermountain West. METHODS Surveys were administered before and after a staged reading of the play by professional actors. Survey items included the short form Trust in Medical Researchers, and single-item questions about group identity, ethics of genetic testing in children, and willingness to donate biospecimens. In addition, respondents were given the option to answer open-ended questions through e-mail. RESULTS Out of the 481 who attended the play, 421 completed both the pre and post surveys, and 166 participants completed open-ended questions online approximately 1 week after the play. Across all participants, there were significant declines for trust in medical researchers and for the survey item "is it ethical for investigators to test children for adult onset diseases" (p < .001 for both) following the play. There was a significant increase in agreement to improve group identity protections (p < .001) and there were no differences on willingness to donate biospecimens to research (p = .777). Qualitative data provided extensive contextual data supporting these perspectives. DISCUSSION This is one of the first studies to document short-term impacts of a theatrical performance on both attitudes and behavioral intentions toward research ethics and clinical research participation. Future research should continue to explore the impact of theatrical performances among public and investigators on the ethical issues and complexities in clinical research.

Health professions trainees' performance in teams is rarely evaluated, but increasingly important as the healthcare delivery systems in which they will practice move towards team-based care. Effective management of care transitions is an important aspect of interprofessional teamwork. This mixed-methods study used a crossover design to randomise health professions trainees to work as individuals and as teams to formulate written care transition plans. Experienced external raters assessed the quality of the written care transition plans as well as both the quality of team process and overall team performance. Written care transition plan quality did not vary between individuals and teams (21.8 vs. 24.4, respectively, p = 0.42). The quality of team process did not correlate with the quality of the team-generated written care transition plans (r = -0.172, p = 0.659). However, there was a significant correlation between the quality of team process and overall team performance (r = 0.692, p = 0.039). Teams with highly engaged recorders, performing an internal team debrief, had higher-quality care transition plans. These results suggest that high-quality interprofessional care transition plans may require advance instruction as well as teamwork in finalising the plan.

Purpose/objectives To examine self-reported severity of fatigue and disturbed sleep experienced daily by women with breast cancer during multiple cycles of chemotherapy, exploring potential classes of women experiencing similar symptom trajectories. . Design In a secondary analysis, classes of women experiencing similar patterns of fatigue and disturbed sleep were identified. . Setting Oncology clinics in the United States. . Sample 166 women with breast cancer receiving chemotherapy. . Methods Severity scores were self-reported daily using an automated system. Classes of fatigue and disturbed sleep severity were identified using latent growth mixture modeling. . Main research variables Fatigue, disturbed sleep, age, stage of disease, education, employment, marital status, chemotherapy regimen, hours lying down, and missed work. . Findings Three fatigue classes were identified. Conclusions Patterns of symptom trajectories for fatigue and disturbed sleep were distinguished by baseline symptom severity. . Implications for nursing Identification of women at risk for fatigue and disturbed sleep may allow clinicians to intensify symptom management.

Addressing muscle deficits within a multi-component exercise fall reduction program is a priority, especially for the highest risk older adults, i.e., those who have fallen previously. Eccentric resistance exercise with its high-force producing potential, at a low energetic cost, may be ideally-suited to address muscle impairments in this population. The purpose of this study was to compare the effects of resistance exercise via negative, eccentrically-induced, work (RENEW) versus traditional (TRAD) resistance exercise on mobility, balance confidence, muscle power and cross sectional area, as well as the number of days high fall risk older adults survived without a fall event over a 1 year period. Randomized, two group, four time point (over 1 year) clinical trial testing RENEW versus TRAD as part of a 3 month multi-component exercise fall reduction program (MCEFRP). Primary outcomes of mobility, balance confidence, muscle power output and cross sectional area were analyzed using mixed effects modeling. The secondary outcomes of days to fall and days to near-fall were analyzed using survival analysis. The MCEFRP did have an effect on fall risk factors considered reversible with exercise interventions though there was no differential effect of RENEW versus TRAD (p = 0.896) on mobility, balance confidence, muscle power and cross sectional area. There were also no group differences in the number of days survived without a fall (p = 0.565) or near-fall (p = 0.678). Despite 100% of participants having at least one fall in the year prior to the MCEFRP, however, after 3 months of exercise and 9 months of follow-up

Context A key challenge in nursing homes is how to attain and clarify resident preferences for care and then communicate these preferences to family members and staff. Objectives We evaluated the feasibility and acceptability of Me & My Wishes— person-centered videos of residents discussing their preferences for daily and end-of-life (EOL) care. Methods For this descriptive study, Me & My Wishes videos were created with residents in three nursing homes in the Pacific Northwest. Feasibility was evaluated by tracking resident enrollment, completing and sharing their video, and conducting debriefing interviews to ascertain residents’ impressions of the recording process and personalized conversation. After viewing the video, staff and family assessed communication quality via survey--the extent to which they perceived messages from the video (e.g., preferences for EOL) to be timely, accurate, adequate, complete, and credible, and items on resident preferences for daily and EOL care. Results Twenty of 33 residents approached created videos; 18 of these residents shared their videos with family or staff. Residents reported that they liked the opportunity to express their wishes. On a scale of 1-7 (lower is better), mean ratings were: 2.0 (family) and 1.3 (staff) for communicating preferences for daily care; 1.9 (family) and 1.2 (staff) for communicating preferences for EOL. Both family and staff reported increased knowledge about resident preferences for daily and EOL care. Conclusion This research supports the feasibility and acceptability of a videotaping approach (Me & My Wishes) for viewing, listening and discussing residents’ preferences for daily and end-of-life care.

BACKGROUND Previous approaches to measuring and improving nursing-sensitive, patient-centered metrics of pain quality and outcomes in hospitalized patients have been limited. METHODS In this translational research study, we disseminated and implemented pain quality indicators in 1611 medical and/or surgical, step-down, rehabilitation, critical access, and obstetrical (postpartum) units from 326 US hospitals participating in the National Database of Nursing Quality Indicators. Eligible patients were English-speaking adults in pain. Trained nurses collected patients' perceptions via structured interview including 9 pain quality indicators, demographic, and clinical variables; these patient experience data were merged with unit and hospital level data. Analyses included geographic mapping; summary statistics and 3-level mixed effects modeling. RESULTS Hospitals in 45 states and District of Columbia participated. Of 22,293 screened patients, 15,012 were eligible; 82% verbally consented and participated. Pain prevalence was 72%. Participants were 59.4% female; ages ranged from 19 to 90+ (median: 59 y); 27.3% were nonwhite and 6.5% were Hispanic. Pain intensity on average over the past 24 hours was 6.03 (SD=2.45) on a 0-10 scale. 28.5% of patients were in severe pain frequently or constantly. Race (nonwhite), younger age, being female and nonsurgical were associated (P

Me & My Wishes are person-centered videos of long term care residents (ages 65-95) living with dementia discussing their preferences for care including end-of-life (EOL) medical intervention. We evaluated the congruence of six EOL treatment preferences between the residents’ personal videos, medical records (e.g. advance directive), and surveys of family (n= 49) and staff (n=37; 118 responses) knowledge of their preferences. Results were highly discordant. Treatments with the most discordance when comparing videos to comparison groups were IV fluids (medical record, 57.1%) and life support (family, 69.4%; staff, 82.2%). Residents reported EOL treatments were considered acceptable if they were temporary, would relieve suffering, or enabled a return to baseline health. These caveats may lead to discordance if they are not conveyed to family or staff. Our findings highlight the need for conversations among residents living with dementia and their caregivers to improve understanding, congruence and adherence of resident EOL preferences.

The purpose of this research was to assess the impact of an educational intervention on paternal knowledge, attitudes, and support about newborn screening (NBS) and dried blood spots (DBS). Participants (n = 147) were randomized into one of two groups. The results from this study indicated that video education tools about NBS and DBS is associated with significantly increased knowledge, support, and satisfaction for both NBS and research use of DBS and an opt-out consent approach for DBS among fathers.

We evaluated the feasibility and acceptability of Me & My Wishes— person-centered videos of nursing home residents discussing their preferences for daily and end-of-life care consisting of four modules: About Me, Preferences for Today, Preferences for Medical Intervention and End-of-Life (EOL), and Afterthoughts. Residents were recruited from three Oregon nursing homes. To evaluate feasibility we tracked resident enrollment and video completion. Twenty (10 women and 10 men) of 34 residents approached (58% enrollment rate) created videos (mean length 19 minutes). Eighteen residents shared videos. To evaluate acceptability we conducted interviews that captured resident perceptions of producing Me & My Wishes videos. After viewing the video, staff (n = 54 surveys) and family (n=13) assessed communication quality via survey--the extent to which they perceived messages from the video (e.g. preferences for EOL) to be timely, accurate, adequate, complete, and credible (scale 1–7; 1= timely, 7= untimely), and items specific to resident preferences for daily and EOL care. We evaluated linear mixed models that calculated means and accounted for multiple views for each resident’s staff. Residents liked making the video, the opportunity to express their wishes, and the ability to share with family; residents reported no changes to their video at follow up. Video communication quality was positive. Means for communicating preferences for daily care were 1.33 (staff) and 2.36 (family); Means for communicating preferences for EOL were 1.27 (staff) and 2.08 (family). Both staff and family reported increased knowledge about resident preferences for daily and EOL care.

Dually enrolled Medicare-Medicaid older adults are a vulnerable population. We tested House's Conceptual Framework for Understanding Social Inequalities in Health and Aging in Medicare-Medicaid enrollees by examining the extent to which disparities indicators, which included race, age, gender, neighborhood poverty, education, income, exercise (e.g., walking), and physical activity (e.g., housework) influence physical function and emotional well-being. This secondary analysis included 337 Black (31%) and White (69%) older Medicare-Medicaid enrollees. Using path analysis, we determined that race, neighborhood poverty, education, and income did not influence physical function or emotional well-being. However, physical activity (e.g., housework) was associated with an increased self-report of physical function and emotional well-being of β = .23, p

Cobalamin (vitamin B12) deficiency is a subtle progressive clinical disorder, affecting nearly 1 in 5 individuals > 60 years old. This deficiency is produced by age-related decreases in nutrient absorption, medications that interfere with vitamin B12 absorption, and other comorbidities. Clinical heterogeneity confounds symptom detection for elderly adults, as deficiency sequelae range from mild fatigue and weakness to debilitating megaloblastic anemia and permanent neuropathic injury. A better understanding of genetic factors that contribute to cobalamin deficiency in the elderly would allow for targeted nursing care and preventive interventions. We tested for associations of common variants in genes involved in cobalamin transport and homeostasis with metabolic indicators of cobalamin deficiency (homocysteine and methylmalonic acid) as well as hematologic, neurologic, and functional performance features of cobalamin deficiency in 789 participants of the Women’s Health and Aging Studies. Although not significant when corrected for multiple testing, eight single nucleotide polymorphisms (SNPs) in two genes, transcobalamin II ( TCN2) and the transcobalamin II-receptor ( TCblR), were found to influence several clinical traits of cobalamin deficiency. The three most significant findings were the identified associations involving missense coding SNPs, namely, TCblR G220R (rs2336573) with serum cobalamin, TCN2 S348F (rs9621049) with homocysteine, and TCN2 P259R (rs1801198) with red blood cell mean corpuscular volume. These SNPs may modify the phenotype in older adults who are more likely to develop symptoms of vitamin B12 malabsorption.

The design and development of games for games with a purpose or serious games often requires that stakeholders from disparate backgrounds collaborate. This often presents significant challenges such as finding common ground, developing shared vocabularies, and understanding each other's expectations, all of which affect team cohesion. We present a case study illustrating how a participatory design method -- the design box -- can facilitate the collaborative efforts of interdisciplinary teams. The design box is a technique for generating game ideas (or pitches) in an iterative fashion using four "walls" or constraints: technology, audience, aesthetics, and the question or problem to be solved. We found this method helped the team understand the potential of games, develop a shared vocabulary, and increase team cohesion.

Objectives: The purpose of this study was to assess the knowledge and beliefs of 72 Latino farmworkers in North Carolina about the threat of health effects of pesticides, including cancer. It sought to explore relationships between threat perceptions and pesticide protective behaviors observed in the field. Methods/Results: Utilizing stepwise multiple regression, the authors found that years worked in agriculture in the United States was associated with decreased use of protective clothing. Conclusion: Pesticide protective behaviors in the field may be improved by utilizing moderately experienced farmworkers (