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With the emergence of patient-centered care, consumers are becoming more effective managers of their care--in other words, 'effective consumers.' To support patients to become effective consumers, a number of strategies to translate knowledge to action (KTA) have been used with varying success. The use of a KTA framework can be helpful to researchers and implementers when framing, planning, and evaluating knowledge translation activities and can potentially lead to more successful activities. This article briefly describes the KTA framework and its use by a team based out of the University of Ottawa to translate evidence-based knowledge to consumers. Using the framework, tailored consumer summaries, decision aids, and a scale to measure consumer effectiveness were created in collaboration with consumers. Strategies to translate the products into action then were selected and implemented. Evaluation of the knowledge tools and products indicates that the products are useful to consumers. Current research is in place to monitor the use of these products, and future research is planned to evaluate the effect of using the knowledge on health outcomes. The KTA framework provides a useful and valuable approach to knowledge translation. [ABSTRACT FROM AUTHOR]

PURPOSE: To compare the effectiveness of an individualized decision aid (DA) with standard educational materials on decisions about menopausal treatments and to assess the feasibility of integrating this DA into clinical practice, with and without coaching. METHODS: We conducted a 3-armed randomized controlled trial in 3 clinics, enrolling menopausal women between the ages of 45 and 65 years with primary care appointments. Of the 145 women included, 99 completed a 2-week follow-up. The control group received generic educational materials, 1 intervention group received an individualized computer-generated DA mailed to patients and their clinicians before clinic appointment, and the 2nd intervention group received the same DA along with coached care before clinic appointment (DA + CC). Decisional conflict, satisfaction, and knowledge were measured 2 weeks after clinic appointment. RESULTS: Participants' mean age was 52 years, and 97% were white. Most women (98%) read all or most of the documents. Decisional conflict was significantly lower in both intervention groups but not in the control group. DA reduced decisional conflict from preintervention to postintervention (pre-post change) by 0.70 (SD = 0.56) points (on a 1-5 scale), compared to reductions of 0.51 (SD = 0.51) and 0.09 (SD = 0.44) for the DA + CC group and the control group, respectively. Satisfaction with the decision made was significantly higher at 2 weeks in the DA v. control group. Self-reported knowledge significantly improved in DA + CC compared to controls. CONCLUSION: Our decision aid lowered decisional conflict and improved patient satisfaction; adding coaching provided little additional benefit. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To describe the extent to which patient decision aids (PtDAs) meet effectiveness standards of the International Patient Decision Aids Collaboration (IPDAS). Data sources. Five electronic databases (to July 2006) and personal contacts (to December 2006). RESULTS: Among 55 randomized controlled trials, 38 (69%) used at least 1 measure that mapped onto an IPDAS effectiveness criterion. MEASURES: of decision quality were knowledge scores (27 trials), accurate risk perceptions (12 trials), and value congruence with the chosen option (3 trials). PtDAs improved knowledge scores relative to usual care (weighted mean difference [WMD] = 15.2%, 95% confidence interval [CI] = 11.7 to 18.7); detailed PtDAs were somewhat more effective than simpler PtDAs (WMD = 4.6%, 95% CI = 3.0 to 6.2). PtDAs with probabilities improved accurate risk perceptions relative to those without probabilities (relative risk = 1.6, 95% CI = 1.4 to 1.9). Relative to simpler PtDAs, detailed PtDAs improved value congruence with the chosen option. Only 2 of 6 IPDAS decision process criteria were measured: feeling informed (15 trials) and feeling clear about values (13 trials). PtDAs improved these process measures relative to usual care (feeling uninformed WMD = -8.4, 95% CI = -11.9 to -4.8; unclear values WMD = -6.3, 95% CI = -10.0 to -2.7). There was no difference in process measures when detailed and simple PtDAs were compared. CONCLUSIONS: PtDAs improve decision quality and the decision process's measures of feeling informed and clear about values; however, the size of the effect varies across studies. Several IPDAS decision process measures have not been used. Future trials need to use a minimum data set of IPDAS evaluation measures. The degree of detail PtDAs require for positive effects on IPDAS criteria should be explored. [ABSTRACT FROM AUTHOR]

BACKGROUND: In North America, although it varies according to the specific type of acute respiratory infections (ARI), use of antibiotics is estimated to be well above the expected prevalence of bacterial infections. The objective of this pilot clustered randomized controlled trial (RCT) is to assess the feasibility of a larger clustered RCT aiming at evaluating the impact of DECISION+, a continuing professional development (CPD) program in shared decision making, on the optimal use of antibiotics in the context of ARI. METHODS/DESIGN: This pilot study is a cluster RCT conducted with family physicians from Family Medicine Groups (FMG) in the Quebec City area, Canada. Participating FMG are randomised to an immediate DECISION+ group, a CPD program in shared decision making, (experimental group), or a delayed DECISION+ group (control group). Data collection involves recruiting five patients consulting for ARI per physician from both study groups before (Phase 1) and after (Phase 2) exposure of the experimental group to the DECISION+ program, and after exposure of the control group to the DECISION+ program (Phase 3). The primary outcome measures to assess the feasibility of a larger RCT include: 1) proportion of contacted FMG that agree to participate; 2) proportion of recruited physicians who participate in the DECISION+ program; 3) level of satisfaction of physicians regarding DECISION+; and 4) proportion of missing data in each data collection phase. Levels of agreement of the patient-physician dyad on the Decisional Conflict Scale and physicians' prescription profile for ARI are performed as secondary outcome measures. DISCUSSION: This study protocol is informative for researchers and clinicians interested in designing and/or conducting clustered RCT with FMG regarding training of physicians in shared decision making. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT00354315. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To describe primary health care professionals' views on barriers and facilitators for implementing the Ottawa Decision Support Framework (ODSF) in their practice. METHODS: Thirteen focus groups with 118 primary health care professionals were performed. A taxonomy of barriers and facilitators to implementing clinical practice guidelines was used to content-analyse the following sources: reports from each workshop, field notes from the principal investigator and written materials collected from the participants. RESULTS: Applicability of the ODSF to the practice population, process outcome expectation, asking patients about their preferred role in decision making, perception that the ODSF was modifiable, time issues, familiarity with the ODSF and its practicability were the most frequently identified both as barriers as well as facilitators. Forgetting about the ODSF, interpretation of evidence, challenge to autonomy and total lack of agreement with using the ODSF in general were identified only as barriers. Asking about values, health professional's outcome expectation, compatibility with the patient-centered approach or the evidence-based approach, ease of understanding and implementation, and ease of communicating the ODSF were identified only as facilitators. CONCLUSION: These results provide insight on the type of interventions that could be developed in order to implement the ODSF in academic primary care practice. PRACTICE IMPLICATIONS: Interventions to implement the ODSF in primary care practice will need to address a broad range of factors at the levels of the health professionals, the patients and the health care system. [ABSTRACT FROM AUTHOR]

BACKGROUND: The Ottawa Decision Support Framework (ODSF) provides a process that facilitates shared decision making. OBJECTIVE: To assess the impact of implementing the ODSF on the agreement and the difference between patients' and physicians' decisional conflict scores. DESIGN: In total, 120 physicians and 903 patients enrolled in this before-and-after study. Implementation of the ODSF was composed of an interactive workshop, feedback, and a reminder at the point of care. The Decisional Conflict Scale (DCS) was completed by physicians and patients after a clinical encounter. RESULTS: The intraclass correlation coefficient was-0.205 +/- 0.096 (95% confidence interval [CI]= - 0.224 to -0.186) before implementing the ODSF and- 0.013 +/- 0.114 (95% CI = - 0.036 to 0.009) after. At the patient level, the following factors were significantly associated with the difference between the patients' and physicians' DCS: unemployed (P = 0.023), implementing the ODSF (P = 0.008), high school degree (P = 0.04), male (P = 0.03), and unilateral role in decision making (P = 0.03). At the physician level, provincial committee (P = 0.001), national committee (P = 0.045), clinical site (P = 0.016), reluctance to share uncertainty (P = 0.023), and anxiety due to uncertainty (P = 0.017) were significantly associated with this outcome. CONCLUSION: After implementing the ODSF, there was less dissimilarity between patients' and physicians' DSC than expected by chance than before. Implementing the ODSF was also found to be associated with the difference between patients' and physicians' DSC. The physician level explained a significant amount of the variance in this outcome, thus emphasizing the importance of an intervention at this level. [ABSTRACT FROM AUTHOR]

OBJECTIVES: The objective of this randomized, controlled study was to determine the usefulness of a decision aid on pre-donation of autologous blood before elective open heart surgery. METHODS: The decision aid (DA) group received a tape and booklet which described the options for peri-operative transfusion in detail. The no decision aid (NDA) group received information usually given to patients about autologous donation. RESULTS: A total of 120 patients were randomized. The DA group rated themselves better prepared for decision making and showed significant improvements in knowledge (p=0.001) and realistic risk perceptions (p=0.001). In both groups there was an increase in the proportion of patients choosing allogeneic blood between baseline and follow-up (p=0.001). Patients in the DA group were significantly more satisfied with the amount of information they received, how they were treated and with the decision they made, than patients in the NDA group. CONCLUSION: The decision aid is useful in preparing patients for decision making. PRACTICE IMPLICATIONS: The next stage is to explore strategies to make it available to all appropriate patients. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to determine personal characteristics and preferences that affect decision making (decisional attributes) in patients with diabetes. In particular, we were interested in relating these attributes to the choice of using aspirin to reduce cardiovascular risk.Research Design and Methods: We conducted a cross-sectional survey (70% response rate) of 206 diabetic patients (median age, 63 years; 42% women; 91% completed high school; median HbA(1c), 8%) attending a tertiary care diabetes clinic. Patients answered a 42-question survey exploring decisional attributes. Medical records provided the source of clinical information. We evaluated sociodemographic, clinical, and decisional predictors of aspirin use. We also conducted a multivariable analysis with aspirin use as a dependent variable.Results: Sixty-seven percent of patients surveyed used aspirin. Patients using aspirin were at higher risk of cardiovascular disease (odds ratio 1.4, 95% CI 1.0-2.1), knew more about the benefits of aspirin (1.9, 1.4-2.6) and less about the risks of aspirin (1.4, 1.2-1.8), and were more certain about using aspirin (0.5, 0.3-0.8) than patients not using aspirin. Patients using aspirin placed a higher value on preventing cardiovascular events than on avoiding the side effects of aspirin. Patients perceived that their diabetes provider and the American Diabetes Association had greater influence on their decision to use aspirin than family members or other patients with diabetes.Conclusions: The decisional attributes of patients with diabetes are associated with aspirin use. Decisional attributes may be the target of research and interventions to reduce underutilization to levels consistent with patient preferences. [ABSTRACT FROM AUTHOR]

BACKGROUND: As patients become more involved in health care decisions, there may be greater opportunity for decision regret. The authors could not find a validated, reliable tool for measuring regret after health care decisions. METHODS: A 5-item scale was administered to 4 patient groups making different health care decisions. Convergent validity was determined by examining the scale's correlation with satisfaction measures, decisional conflict, and health outcome measures. RESULTS: The scale showed good internal consistency (Cronbach's alpha = 0.81 to 0.92). It correlated strongly with decision satisfaction (r = -0.40 to -0.60), decisional conflict (r = 0.31 to 0.52), and overall rated quality of life (r = -0.25 to -0.27). Groups differing on feelings about a decision also differed on rated regret: F(2, 190) = 31.1, P < 0.001. Regret was greater among those who changed their decisions than those who did not, t(175) = 16.11, P < 0.001. CONCLUSIONS: The scale is a useful indicator of health care decision regret at a given point in time. [ABSTRACT FROM AUTHOR]

The aim of this secondary analysis was to compare the effects of a tailored decision aid (DA) with those of a pamphlet on the agreement between women's and physicians' decisional conflict about hormone replacement therapy (HRT). A total of 40 physicians and 184 women provided data. The agreement between women's and physicians' decisional conflict scores was measured using the intraclass correlation coefficient (ICC). The ICC was higher for dyads in the DA group (ICC=0.44; 95% confidence interval (CI)=0.25-0.59) compared to the pamphlet group (ICC=0.28; 95% CI=0.06-0.47). When the average score of decisional conflict of women nested within a physician and of each physician were used, the ICC for the DA group and the pamphlet group was 0.41 (95% CI=-0.04 to 0.72) and 0.06 (95% CI=-0.41 to 0.49), respectively. Compared to pamphlets, DAs appear to improve the agreement between women's and physicians' decisional conflict about HRT. [ABSTRACT FROM AUTHOR]

This study's aim was to develop and pilot test an evidence-based decision aid for postmenopausal women with osteoporosis who are considering options to prevent fractures. The aid was based on the Ottawa Decision Support Framework, and integrated evidence from our Cochrane systematic reviews. Following development by a panel of experts in osteoporosis and decision making, a user review panel of practitioners and women who had already made their decision about osteoporosis therapy reviewed the decision aid for acceptability. Then the decision aid was pilot tested using a before-after design in women at the point of decision making. Compared to baseline, there were statistically significant improvements in knowledge, realistic expectations and decreased decisional conflict. Our decision aid shows promise in preparing women for counseling about osteoporosis therapies. Long-term adherence to chosen therapy and quality of life will be evaluated in a randomized controlled trial. [ABSTRACT FROM AUTHOR]

A decision aid for the surgical treatment of early breast cancer was evaluated in a randomized controlled trial. The decision aid, a tape and workbook, includes explicit presentation of probabilities, photographs and graphics, and a values clarification exercise. Community surgeons were randomized to use the decision aid or a control pamphlet. Patients completed a questionnaire prior to using the decision aid, after reviewing it but prior to surgery, and 6 months after enrollment. There was no difference in anxiety, knowledge, or decisional regret across the 2 groups. There was a nonsignificant trend toward lower decisional conflict in the decision aid group. A subgroup of women who were initially leaning toward mastectomy or were unsure had lower decisional conflict. Although the decision aid had minimal impact on the main study outcomes, a subgroup may have benefited. Such subgroups should be identified, and appropriate decision support interventions should be developed and evaluated. [ABSTRACT FROM AUTHOR]

Objective: To develop and evaluate a decision aid designed to prepare patients of advanced maternal age for counseling about prenatal diagnostic testing. Setting: A regional genetics center. Design: A before/after study. Interventions: Participants used an audioguided workbook to learn about options and outcomes and to clarify personal risks, values, questions, and predispositions. Subjects: 21 women of advanced maternal age and 17 spouses. Main outcome measures: Knowledge of prenatal testing alternatives, decisional conflict, level of anxiety, and acceptability of the decision aid. Results: After using the decision airy participants had significantly reduced decisional conflict (uncertainty) and a significant increase in knowledge. There was no effect on state or trait anxiety. More than three-quarters of participants were satisfied with the length, clarity, balance, and acceptability of the decision aid. Conclusions: The decision aid shows promise as a useful aid for preparing couples for counseling. [ABSTRACT FROM AUTHOR]

As patients become more involved in decisions affecting their health, it is important to monitor and improve the support clinicians provide to facilitate shared decision making. The Decision Support Analysis Tool (DSAT) was developed as a research tool to evaluate practitioners' use of decision support and related communication skills during a clinical encounter. The DSAT, consisting of six categories of decision support skills and four categories of communication skills, was tested with 34 actual transcripts of patient-physician dialogue. The patients were prepared for the clinical encounter with either a detailed decision aid plus worksheet (n=16) or a pamphlet (n=18). Pairs of raters, blinded to the intervention allocation, coded each transcript independently. The overall inter-rater agreement and kappa coefficients were, respectively 75% and 0.59 for the decision support skills and 76% and 0.68 for the communication skills categories. The frequency of DSAT skills coded: (a) were significantly correlated with three out of six patient and physician outcome measures (r>0.30, P<0.05); and (b) showed significant discrimination (P=0.05) or trends (P<0.15) in discrimination between the decision aid and pamphlet groups. The DSAT shows promise as a reliable and valid evaluation tool but requires further testing with larger samples. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The Preparation for Decision Making (PrepDM) scale was developed to evaluate decision processes relating to the preparation of patients for decision making and dialoguing with their practitioners. The objective of this study was to evaluate the scale's psychometric properties. METHODS: From July 2005 to March 2006, after viewing a decision aid prescribed during routine clinical care, patients completed a questionnaire including: demographic information, treatment intention, decisional conflict, decision aid acceptability, and the PrepDM scale. RESULTS: Four hundred orthopaedic patients completed the questionnaire. The PrepDM scale showed significant correlation with the informed (r=-0.21, p<0.01) and support (r=-0.13, p=0.01) subscales (DCS); and discriminated significantly between patients who did and did not find the decision aid helpful (p<0.0001). Alpha coefficients for internal consistency ranged from 0.92 to 0.96. The scale is strongly unidimensional (principal components analysis) and Item Response Theory analyses demonstrated that all ten scale items function very well. CONCLUSION: The psychometric properties of the PrepDM scale are very good. PRACTICE IMPLICATIONS: The scale could allow more comprehensive evaluation of interventions designed to prepare patients for shared-decision making encounters regarding complex health care decisions. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To characterize the use of personal stories in publicly available patient decision aids (PtDAs). METHODS: Descriptive study guided by a structured coding taxonomy based on the International Patient Decision Aid Standards, Ottawa Decision Support Framework, Decisional Conflict Scale and qualitative content analysis. Personal story was defined as an illustrative, first-person narrative in any format. Sampling from the 2007 Cochrane A to Z Inventory was stratified by developer and one-third of PtDAs were randomly sampled. RESULTS: Of 200 publicly available PtDAs from 5 developers, 168 from 3 developers contained stories. A stratified sample of 56 PtDAs contained 260 stories. Thirty of 56 PtDAs presented an equal number of stories favouring or against the most intensive option. Thirty PtDAs described narrators' satisfaction with outcome(s): 21 contained only stories portraying satisfaction; 9 contained stories portraying satisfaction and dissatisfaction. CONCLUSION: Publicly available PtDAs vary in their use of stories. Most PtDAs balance the number of stories favouring and against the most intensive option presented; most PtDAs do not balance the number of stories portraying satisfaction or dissatisfaction with the outcome(s) of the decision. PRACTICE IMPLICATIONS: Research is needed to better understand the impact of stories on patient decision making and to inform the guidelines for their inclusion in PtDAs. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To evaluate the brief Decision Support Analysis Tool (DSAT-10) for auditing the quality of nurse-standardized patient encounters, structuring feedback for nurses, and testing instrument reliability. METHODS: A systematic process was used to develop standardized patient scenarios, pilot-test scenarios, calibrate DSAT-10 coders, analyze taped telephone encounters using DSAT-10, and provide feedback. Inter-rater reliability was calculated using coder agreement, kappa, and intra-class correlation coefficients. RESULTS: Six scenarios portrayed patients' decisional uncertainty from either: pressure from others (n=2), unclear values (n=2), or inadequate information (n=2). Scenarios were easy to use over the telephone, produced realistic role performance, and were practical for audio-recording interactions. DSAT-10 analysis of 76 nurse-standardized patient encounters revealed nurses' strengths (e.g., information provision) and their limitations (e.g., lack of discussion of values and/or support needs). Scores discriminated between trained and untrained nurses. The kappa coefficient over all items was 0.55 (95% CI: 0.49, 0.61) with higher agreement for encounters involving trained nurses (0.62; 95% CI: 0.43, 0.80). CONCLUSION: Auditing nurse-standardized patient encounters using DSAT-10 and providing feedback to nurses was feasible. Although DSAT-10 items had adequate inter-rater reliability and discriminated between trained/untrained nurses, some items were problematic. PRACTICE IMPLICATIONS: Providing feedback on nurse encounters with standardized patients experiencing uncertainty has the potential to enhance nurses' decision support skills. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To identify a set of critical facts and key goals and concerns for five common medical conditions, benign prostate disease, hip and knee osteoarthritis, herniated disc and spinal stenosis and examine the validity of the method for identifying these items. METHODS: Investigators identified facts and goals through literature reviews and qualitative work with patients and providers. A cross-sectional survey of patients and providers was conducted to examine the accuracy, importance and completeness of the identified items. RESULTS: 42 facts (6-16 per condition) and 31 goals and concerns (4-13 per condition) were identified. 182 responses were obtained from patients (76.5% response rate) and 113 responses from providers (78% response rate). Overall, the facts were accurate, important and complete across all conditions. For one condition (hip osteoarthritis), the goals did not meet the criteria for completeness. There was more disagreement between patients and providers around the ranking of goals than of facts. CONCLUSIONS: Overall, respondents found the identified facts and goals accurate, important and complete. Significant differences between patients' and providers' rankings highlight the importance of including both perspectives. PRACTICE IMPLICATIONS: Instruments to measure whether or not patients are informed and the extent to which treatments reflect patients' goals must balance patients' and providers' perspectives when selecting items to include. [ABSTRACT FROM AUTHOR]

Lead (Pb(II)) is a pervasive heavy metal toxin with many well-established negative effects on human health. Lead toxicity arises from cumulative, repeated environmental exposures. Thus, prophylactic strategies to protect against the bioaccumulation of lead could reduce lead-associated human pathologies. Here we show that DNA and RNA aptamers protect C. elegans from toxic phenotypes caused by lead. Reproductive toxicity, as measured by brood size assays, is prevented by co-feeding of animals with DNA or RNA aptamers. Similarly, lead-induced neurotoxicity, measured by behavioral assays, are also normalized by aptamer feeding. Further, cultured human HEK293 and primary murine osteoblasts are protected from lead toxicity by transfection with DNA aptamers. The osteogenic development, which is decreased by lead exposure, is maintained by prior transfection of lead-binding DNA aptamers. Aptamers may be an effective strategy for the protection of human health in the face of increasing environmental toxicants., Competing Interests: Declaration of Competing Interest N.G.F., A.A., and S. Ramis de Ayreflor Reyes have filed a patent application for the technology described herein. J.H.S. is a scientific co-founder of AAVAA Therapeutics and holds equity in this company. All other authors declare no competing interests., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

This paper is derived from a presentation given by the first author at the 2024 Symposium for the Calvin Schwabe Award, presented to Dr. Jan Sargeant for Lifetime Achievement in Veterinary Epidemiology and Preventive Medicine. Researchers must work toward ensuring validity throughout the research process, but we also should ensure that our resulting outcomes are specified to appropriately inform and enable decision-making by the end-users. Given the scope and diversity of topics addressed by veterinary researchers, the potential beneficiaries or stakeholders of our research also varies. Stakeholders or end-users may include veterinary practitioners, other researchers, livestock owners, "pet parents," government officials, corporate entities, or the general public in the case of public health or food security and safety issues. Current research in animal agriculture provides an opportunity to consider research outcomes in a sustainability framework which concurrently values social, economic, and environment impacts of animal health and management decisions. In companion animals, contemporary issues of affordability and access to care, quality of life, or compliance effects on efficacy, also extend the spectrum of relevant research outcomes. In these cases, traditional measures of animal health, such as morbidity, mortality, or weight gain, may not be the most relevant for the end-users. Furthermore, if studies are not designed and analyzed with well-defined primary outcomes that are informed by stakeholders' values, but rather post-hoc considerations of these values are made based on indirect or surrogate measures, there is the potential to incorporate error and bias into our conclusions and the end-users' decision-making processes., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision., (Copyright © 2024 Renter, Sargeant, O’Connor and Ruple.)

Purpose: Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention., Methods: Pediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time., Results: We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group., Conclusion: The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

This manuscript summarizes a presentation delivered by the first author at the 2024 symposium for the Calvin Schwabe Award for Lifetime Achievement in Veterinary Epidemiology and Preventive Medicine, which was awarded to Dr. Jan Sargeant. Epidemiologic research plays a crucial role in understanding the complex relationships between exposures and health outcomes. However, the accuracy of the conclusions drawn from these investigations relies upon the meticulous selection and measurement of exposure variables. Appropriate exposure variable selection is crucial for understanding disease etiologies, but it is often the case that we are not able to directly measure the exposure variable of interest and use proxy measures to assess exposures instead. Inappropriate use of proxy measures can lead to erroneous conclusions being made about the true exposure of interest. These errors may lead to biased estimates of associations between exposures and outcomes. The consequences of such biases extend beyond research concerns as health decisions can be made based on flawed evidence. Recognizing and mitigating these biases are essential for producing reliable evidence that informs health policies and interventions, ultimately contributing to improved population health outcomes. To address these challenges, researchers must adopt rigorous methodologies for exposure variable selection and validation studies to minimize measurement errors., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision., (Copyright © 2024 Ruple, Sargeant, O’Connor and Renter.)

Transcriptional profiling has become a common tool for investigating the nervous system. During analysis, differential expression results are often compared to functional ontology databases, which contain curated gene sets representing well-studied pathways. This dependence can cause neuroscience studies to be interpreted in terms of functional pathways documented in better studied tissues (e.g. , liver) and topics (e.g. , cancer), and systematically emphasizes well-studied genes, leaving other findings in the obscurity of the brain "ignorome". To address this issue, we compiled a curated database of 918 gene sets related to nervous system function, tissue, and cell types ("Brain.GMT") that can be used within common analysis pipelines ( GSEA, limma, edgeR ) to interpret results from three species (rat, mouse, human). Brain.GMT includes brain-related gene sets curated from the Molecular Signatures Database (MSigDB) and extracted from public databases (GeneWeaver, Gemma, DropViz, BrainInABlender, HippoSeq) and published studies containing differential expression results. Although Brain.GMT is still undergoing development and currently only represents a fraction of available brain gene sets, "brain ignorome" genes are already better represented than in traditional Gene Ontology databases. Moreover, Brain.GMT substantially improves the quantity and quality of gene sets identified as enriched with differential expression in neuroscience studies, enhancing interpretation. •We compiled a curated database of 918 gene sets related to nervous system function, tissue, and cell types ("Brain.GMT").•Brain.GMT can be used within common analysis pipelines ( GSEA, limma, edgeR ) to interpret neuroscience transcriptional profiling results from three species (rat, mouse, human).•Although Brain.GMT is still undergoing development, it substantially improved the interpretation of differential expression results within our initial use cases., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Author(s).)

Stress is a major influence on mental health status; the ways that individuals respond to or copes with stressors determine whether they are negatively affected in the future. Stress responses are established by an interplay between genetics, environment, and life experiences. Psychosocial stress is particularly impactful during adolescence, a critical period for the development of mood disorders. In this study we compared two established, selectively-bred Sprague Dawley rat lines, the "internalizing" bred Low Responder (bLR) line versus the "externalizing" bred High Responder (bHR) line, to investigate how genetic temperament and adolescent environment impact future responses to social interactions and psychosocial stress, and how these determinants of stress response interact. Male bLR and bHR rats were exposed to social and environmental enrichment in adolescence prior to experiencing social defeat and were then assessed for social interaction and anxiety-like behavior. Adolescent enrichment caused rats to display more social interaction, as well as nominally less social avoidance, less submission during defeat, and resilience to the effects of social stress on corticosterone, in a manner that seemed more notable in bLRs. For bHRs, enrichment also caused greater aggression during a neutral social encounter and nominally during defeat, and decreased anxiety-like behavior. To explore the neurobiology underlying the development of social resilience in the anxious phenotype bLRs, RNA-seq was conducted on the hippocampus and nucleus accumbens, two brain regions that mediate stress regulation and social behavior. Gene sets previously associated with stress, social behavior, aggression and exploratory activity were enriched with differential expression in both regions, with a particularly large effect on gene sets that regulate social behaviors. Our findings provide further evidence that adolescent enrichment can serve as an inoculating experience against future stressors. The ability to induce social resilience in a usually anxious line of animals by manipulating their environment has translational implications, as it underscores the feasibility of intervention strategies targeted at genetically vulnerable adolescent populations., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Authors.)

This study summarizes a presentation at the symposium for the Calvin Schwabe Award for Lifetime Achievement in Veterinary Epidemiology and Preventive Medicine, which was awarded to the first author. As epidemiologists, we are taught that "correlation does not imply causation." While true, identifying causes is a key objective for much of the research that we conduct. There is empirical evidence that veterinary epidemiologists are conducting observational research with the intent to identify causes; many studies include control for confounding variables, and causal language is often used when interpreting study results. Frameworks for studying causes include the articulation of specific hypotheses to be tested, approaches for the selection of variables, methods for statistical estimation of the relationship between the exposure and the outcome, and interpretation of that relationship as causal. When comparing observational studies in veterinary populations to those conducted in human populations, the application of each of these steps differs substantially. The a priori identification of exposure-outcome pairs of interest are less common in observational studies in the veterinary literature compared to the human literature, and prior knowledge is used to select confounding variables in most observational studies in human populations, whereas data-driven approaches are the norm in veterinary populations. The consequences of not having a defined exposure-outcome hypotheses of interest and using data-driven analytical approaches include an increased probability of biased results and poor replicability of results. A discussion by the community of researchers on current approaches to studying causes in observational studies in veterinary populations is warranted., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Sargeant, O’Connor, Renter and Ruple.)

Objectives: Lying is a common social behavior; however, there is limited research on lying about health and if this differs into later life. This study sought to explore age differences in the frequency of and motivations behind telling health-related lies and if lying differs within romantic and parent/child relationships., Methods: Younger (N = 158) and older adults (N = 149) reported how often they told general health-related lies, how often they lied about health to their romantic partner and parent or adult child, and why they told health lies., Results: Compared with older adults, younger adults lied more frequently to conceal sickness and pain as well as to feign sickness. Younger adults also told more health lies to their parent than their romantic partner, but older adults lied to their adult child and partner at similar rates. Younger adults reported lying more about their health because they felt ashamed or embarrassed and they worried about what others would think of them compared with older adults., Discussion: These results suggest that health-related honesty may increase in later life and that younger and older adults differ in why they tell health lies. Implications for psychological theory on lying about one's health and health interventions are discussed., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Randomized clinical trials (RCTs) are designed for measuring the effectiveness of the treatments and testing a hypothesis regarding the relative effect between two or more treatments. Trial designers are often interested in maximizing power when the total sample size is fixed or minimizing the required total sample size to reach a pre-specified power. One approach to maximizing power proposed by previous researchers is to leverage prior evidence using meta-analysis (NMA) to inform the sample size determination of a new trial. For example, researchers may be interested in designing a two-arm trial comparing treatments A and B which are already in the existing trial network but do not have any direct comparison. The researchers' intention is to incorporate the result into an existing network for meta-analysis. Here we develop formulas to address these options and use simulations to validate our formula and evaluate the performance of different analysis methods in terms of power. We also implement our proposed method into the R package OssaNMA and publish an R Shiny app for the convenience of the application. The goal of the package is to enable researchers to readily adopt the proposed approach which can improve the power of an RCT and is therefore resource-saving. In the R Shiny app, We also provide the option to include the cost of each treatment which would enable researchers to compare the total treatment cost associated with each design and analysis approach. Further, we explore the effect of allocation to treatment group on study power when the a priori plan is to incorporate the new trial result into an existing network for meta-analysis., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Ye et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)