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Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research (PER) is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the universe of patient engagement in research.

Purpose: This study aimed to identify the sequelae of traumatic brain injury (TBI) that are most troubling to veterans with TBI and their families and identify veteran-family differences in content and ranking. Instead of standardized measures of symptom frequency or severity, which may be insensitive to change or intervention effects, we used a target outcome measure for veterans with TBI and their key family members, which elicited open-ended reports concerning the three most serious TBI-related problems. This was followed by Likert-scaled ratings of difficulty in managing the problem. Methods: In this cross-sectional study, interviews were conducted in veterans’ homes. Participants included 83 veterans with TBI diagnosed at a Veterans Affairs medical rehabilitation service and a key family member of each veteran. We utilized open-ended questions to determine the problems caused by TBI within the last month. Sociodemographic characteristics of veterans and family members, and veterans’ military and medical characteristics were collected. A coding scheme was developed to categorize open-ended responses. Results: Families identified nearly twice as many categories of problems as did veterans, and veterans and families ranked problem categories very differently. Veterans ranked cognitive and physical problems worst; families ranked emotional and interpersonal problems worst. Conclusions: Easily administered open-ended questions about the most troubling TBI-related problems yield novel insights and reveal important veteran-family discrepancies.

Purpose of the Review: The purpose of the review is to discuss current proven benefits and problems of integrating exercise in the care of people receiving dialysis by reviewing literature from the last few years and identifying important questions that still need to be asked and answered., Methods: A focused review and appraisal of the literature were done. Original peer-reviewed articles, review articles, opinion pieces and guidelines were identified from PubMed and Google Scholar databases. Only sources in English were accessed. Search terms "exercise" and "dialysis" were used to find active recruiting randomized trials in various clinical trial registry platforms., Key Findings: Numerous studies have demonstrated the benefits of exercise training in individuals receiving dialysis, limited by factors such as short duration of follow-up and inconsistent adverse event reporting and outcomes selected. Notable gaps in exercise research in dialysis include ways to maintain programs and patient motivation, studies in peritoneal dialysis and home hemodialysis patients, and how best to define and measure outcomes of interest., Implications: This review summarizes the current state of exercise in people receiving dialysis and serves as a call to action to conduct large, randomized controlled trials to improve the quality of evidence needed to implement and sustain innovative, exercise interventions, and programs for this population., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

Patient-centered clinical decision support (PC CDS) includes digital health tools that support patients, caregivers, and care teams in healthcare decisions that incorporate patient-centered factors related to four components: knowledge, data, delivery, and use. This paper explores the current state of each factor and how each promotes patient-centeredness in healthcare. We conducted a literature review, reviewing 175 peer-reviewed and grey literature, and eighteen key informant interviews. Findings show a need for more research on how to incorporate patient input into the guideline selection and prioritization for PC CDS, development and implementation of PC CDS tools, technical challenges for capturing patient contributed data, and optimizing PC CDS across various settings to meet patient and caregiver needs. While progress is being made in each of the four components of PC CDS, critical gaps remain.

Bariatric surgery is a critical strategy in managing morbid obesity. Enhanced recovery after surgery (ERAS) protocols have revolutionized perioperative care in this field. This systematic review aims to synthesize current evidence on the impact of ERAS protocols on patient-centered outcomes in bariatric surgery. A comprehensive search across multiple databases was conducted, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies involving adult patients undergoing bariatric surgery and focusing on the implementation and outcomes of ERAS protocols were included. Data extraction and analysis emphasized patient recovery, well-being, and satisfaction. Eleven studies met the inclusion criteria. The review revealed that ERAS protocols are associated with reduced postoperative recovery times, decreased hospital stays, and enhanced patient satisfaction. Notably, ERAS protocols effectively reduced complications and optimized resource utilization in bariatric surgery. Comparative insights from non-bariatric surgeries highlighted the versatility and adaptability of ERAS protocols across different surgical disciplines. ERAS protocols significantly improve patient-centered outcomes in bariatric surgery. Their adoption facilitates a patient-focused approach, accelerating recovery and enhancing overall patient well-being. The findings advocate for the broader implementation of ERAS protocols in surgical care, emphasizing the need for continuous refinement to meet evolving healthcare demands. This review supports the paradigm shift toward integrating ERAS protocols in bariatric surgery and potentially other surgical fields., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2024, Anika et al.)

Background: Patient response burden is often raised as a human subject concern in consideration of the length or complexity of patient-reported outcome (PRO) instruments used in oncology.Objectives: To quantify patient response burden and identify its predictive factors.Methods: Data were collected presurgically during a prospective trial that used a comprehensive symptom and health-related quality-of-life (HRQOL) PRO assessment. A subset of patients also completed HRQOL interviews. Response burden was captured using an internally developed six-item instrument. Demographic and clinical characteristics as well as HRQOL scores were examined as potential predictors using hierarchical regression. Response burden was used to predict participant dropout at the first follow-up interval.Results: A total of 275 patients (mean age 67.5 years; 23.6% female) completed surveys (n = 126) or surveys in addition to interviews (n = 149). Patients experienced low response burden (mean 12.19 ± 11.65). Repetitive questions were identified by 60 patients (21.8%), whereas 31.6% indicated that additional information should be gathered; 35 patients (12.7%) identified repetitive questions and expressed a desire for additional items. Low self-reported cognitive function was a significant predictor of higher response burden (β = -0.20; t(270) = -3.38; P = 0.01; model-adjusted R2 = 0.04). Response burden was not a significant predictor of study dropout.Conclusions: Despite completing a large battery of PRO measures and interviews, patients reported minimal response burden, with nearly one-third expressing that more questions should have been asked. Patients with lower cognitive function are more likely to report higher response burden when completing PRO measures. Further examination of patient characteristics related to response burden may reveal useful pathways for tailoring patient-centered interventions. [ABSTRACT FROM AUTHOR]

Background: Imaging tests are one of the most sophisticated types of diagnostic tools used in health care, yet there are concerns that imaging is overused. Currently, tests are typically evaluated and implemented based on their accuracy, and there is limited knowledge about the range of patient-centered outcomes (PCOs) that imaging tests may lead to. This study explores patients' experiences and subsequent outcomes of imaging tests most notable to patients.Methods: Adult patients from four primary care clinics who had an x-ray, CT, MRI, or ultrasound in the 12 months before recruitment participated in a single semistructured interview to recount their imaging experience. Interview transcripts were analyzed thematically.Results: Four themes related to PCOs were identified from 45 interviews. Participants' mean age was 53 years (25-83 years), 30 had undergone a diagnostic imaging test, and 15 underwent imaging for screening or monitoring. Themes included knowledge gained from the imaging test, its contribution to their overall health care journey, physical experiences during the test procedure, and impacts of the testing process on emotions.Conclusions: Patients identified various imaging test outcomes that were important to them. Measurement and reporting these outcomes should be considered more often in diagnostic research. Tools for providers and patients to discuss and utilize these outcomes may help promote shared decision making around the use and impact of imaging tests. [ABSTRACT FROM AUTHOR]

Abstract Anemia is a frequently diagnosed condition that may be a symptom of or complication of many illnesses affecting patients of all demographics. Anemia can lead to both worsened clinical outcomes and reduced quality of life. Patient-reported outcome measures (PROMs) are methodological tools used to capture the impact of disease on patient well-being. Use of PROMs in medical research is becoming more common as it is increasingly recognized that disease outcomes of interest to researchers and clinicians are not always consistent with patients' greatest concerns related to their diseases. We conducted a scoping review to characterize the studies that have evaluated patient-centered outcomes using PROMs in patients undergoing treatment for anemia. We conducted a search of Medline (Ovid), EMBASE (Ovid), PsychINFO, and CINAHL databases for studies published until January 2017 that investigated an intervention to treat anemia in any patient population and used at least 1 PROM to evaluate patient-centered outcomes. A descriptive synthesis was performed to characterize the PROMs used and to evaluate the quality of patient-centered outcome (PCO) reporting. Of the 3224 studies identified in the initial search, 130 met all eligibility criteria. We found that the population most frequently studied was oncology patients (46.2% of studies). The therapy for anemia evaluated in the most studies was erythropoietin-stimulating agents (77.7% of studies). The most commonly used PROM was the Functional Assessment of Cancer Therapy/Functional Assessment of Chronic Illness Therapy tool (46.9%), and the majority of studies used only 1 PROM tool (53.1%). We found significant variability in the quality of PCO reporting across all included studies. Improved methodologic rigor in the assessment of PCOs in anemia management is needed in future studies. Highlights • PCOs in anemia are mainly studied in medical oncology patients administered ESAs. • FACT/FACIT tools were the most commonly used PROM for assessing PCOs. • PCO reporting in studies of anemia management is poor in quality. • Improvements are needed in the methodology and reporting of PCOs in anemia. [ABSTRACT FROM AUTHOR]

Abstract Objective This report proposes a framework to integrate evidence-based dentistry (EBD) in a systematic approach in the clinical management of a patient diagnosed with drug-induced gingival hyperplasia combined with generalized aggressive periodontitis.This report illustrates the case of a 37-year-old female who presented to the Department of Periodontology at Tufts University School of Dental Medicine with enlarged, tender, bleeding gums, and loose teeth combined with a history of uncontrolled hypertension treated with calcium channel blockers. Methods Incorporating the EBD process, a new 5-step framework is proposed: ask the clinical question, acquire and appraise the evidence, apply it in the clinical setting, and assess the subjective and objective outcomes. Articles on aggressive periodontitis and/or gingival enlargement were sought using the assistance of an expert librarian. The search was conducted on the PubMed, Embase, and Scopus databases. Results Initial literature search identified 34 publications. Articles were reviewed by 2 clinicians, and 31 relevant articles were selected. Twenty-six of the references matched the levels of evidence initially agreed upon. Based on the scientific evidence, patient's chief complaint, and clinical expertise, a decision tree highlighting treatment options was compiled. The outcomes of the clinical management revealed that combined conditions can be successfully treated with nonsurgical therapy before proceeding with surgical therapy. Conclusion Within the limitations of this study, integrating EBD concepts was a reliable method to treat an atypical case, where 2 severe periodontal conditions were combined: drug-induced gingival enlargement and generalized aggressive periodontitis. [ABSTRACT FROM AUTHOR]

Objectives: The aim of Working Group 3 was to focus on three topics that were assessed using patient‐reported outcome measures (PROMs). These topics included the following: (a) the aesthetics of tooth and implant‐supported fixed dental prostheses focusing on partially edentulous patients, (b) a comparison of fixed and removable implant‐retained prostheses for edentulous populations, and (c) immediate versus early/conventional loading of immediately placed implants in partially edentate patients. PROMs include ratings of satisfaction and oral health‐related quality of life (QHRQoL), as well as other indicators, that is, pain, general health‐related quality of life (e.g., SF‐36). Materials and methods: The Consensus Conference Group 3 participants discussed the findings of the three systematic review manuscripts. Following comprehensive discussions, participants developed consensus statements and recommendations that were then discussed in larger plenary sessions. Following this, any necessary modifications were made and approved. Results: Patients were very satisfied with the aesthetics of implant‐supported fixed dental prostheses and the surrounding mucosa. Implant neck design, restorative material, or use of a provisional restoration did not influence patients' ratings. Edentulous patients highly rate both removable and fixed implant‐supported prostheses. However, they rate their ability to maintain their oral hygiene significantly higher with the removable prosthesis. Both immediate provisionalization and conventional loading receive positive patient‐reported outcomes. Conclusions: Patient‐reported outcome measures should be gathered in every clinical study in which the outcomes of oral rehabilitation with dental implants are investigated. PROMs, such as patients' satisfaction and QHRQoL, should supplement other clinical parameters in our clinical definition of success. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this systematic review and meta‐analysis was to summarize the existing evidence on patient‐reported aesthetic outcome measures (PROMs) of implant‐supported, relative to tooth‐supported fixed dental prostheses. Material and Methods: In April 2017, two reviewers independently searched the Medline (PubMed), EMBASE, and Cochrane electronic databases, focusing on studies including patient‐reported aesthetic outcomes of implant‐ and tooth‐supported fixed dental prostheses (FDPs). Human studies with a mean follow‐up period of at least 1 year, a minimum of ten patients, and English, German, or French publication were included. For the comparison of subgroups, random‐effects meta‐regression for aggregate‐level data was used. Results: The systematic search for implant‐supported prostheses focusing on patient‐reported outcomes identified 2,675 titles, which were screened by two independent authors. Fifty full‐text articles were analyzed, and finally, 16 publications (including 19 relevant study cohorts) were included. For tooth‐supported prostheses, no studies could be included. A total of 816 implant‐supported reconstructions were analyzed by patients. Overall aesthetic evaluation by the patients' visual analogue scale (VAS) rating was high in implant‐supported FDPs (median: 90.3; min–max: 80.0–94.0) and the surrounding mucosa (median: 84.7; min–max: 73.0–92.0). Individual restorative materials, implant neck design (i.e., tissue or bone level type implants), and the use of a fixed provisional had no effect on patients' ratings of the definitive implant‐supported FDPs. Conclusions: Aesthetics is an important patient‐reported measure, which lacks in standardized methods; however, patients' satisfaction was high for implant‐ supported FDPs and the surrounding mucosa. [ABSTRACT FROM AUTHOR]

Abstract Most hemodialysis (HD) patients experience symptoms of depression, pain and fatigue that impair their health-related quality of life (HRQOL) significantly. These symptoms are associated with increased hospitalization and mortality, mediated by behavioral factors (e.g. non-adherence to medication and dialysis) and biological factors (e.g. inflammatory cytokines). Prior interventions to alleviate symptoms and improve HRQOL showed limited effectiveness in HD patients and their effect on bio-behavioral mediators is lacking evidence. It is imperative to improve patient-centered dialysis care and to address call from Kidney Disease Improving Global Outcomes (KDIGO) guidelines for integration of symptom assessment and management in routine HD-care. Technology-Assisted stepped Collaborative Care (TĀCcare) is a multi-center randomized controlled trial (RCT) of 150 diverse HD patients from Pennsylvania and New Mexico, designed to compare the effectiveness of a 12-week stepped collaborative care intervention (cognitive behavioral therapy, CBT) with an attention control arm of technology-delivered health education. Collaborative care provides an integrated multi-disciplinary structured management plan. Furthermore, a stepped approach to pharmacotherapy and/or CBT allows for individualization of treatment according to patients' clinical status, preferences and treatment response. To simplify the delivery of CBT and to minimize patient and provider burden, we will use live video-conferencing with patients in dialysis units. We will examine the effect of these interventions on patient symptoms, HRQOL, treatment adherence and inflammatory biomarkers. This RCT tests a readily implementable intervention that can be integrated in routine HD-care and will generate novel and meaningful insights on strategies to alleviate common symptoms and improve HRQOL in HD. [ABSTRACT FROM AUTHOR]

Abstract Patient-centeredness is an important factor in patient health and engagement but its association in patients with obesity is not thoroughly understood. Of 28,854 participants aged ≥60 from the Medical Expenditure Panel Survey 2004–2013, we evaluated four patient-centered domains: patient/provider relationship, shared-decision making, access to care, overall medical care provider rating, and prescription care. Weighted logistic (OR [95% CI]) and linear (β ± s.e.; p-value) regression models demonstrated that participants as having obesity reported a marginally higher delay in getting the necessary care than healthy BMI (OR 1.25 [1.01, 1.53]). Older adults with obesity report reduced perceived access to care. [ABSTRACT FROM AUTHOR]

Background: Patient-centered research requires the meaningful involvement of patients and caregivers throughout the research process. The objective of this study was to create a process for sustainable engagement for research prioritization within oncology.Methods: From December 2014 to 2016, a network of engaged patients for research prioritization was created in partnership with the Bladder Cancer Advocacy Network (BCAN): the BCAN Patient Survey Network (PSN). The PSN leveraged an online bladder cancer community with additional recruitment through print advertisements and social media campaigns. Prioritized research questions were developed through a modified Delphi process and were iterated through multidisciplinary working groups and a repeat survey.Results: In year 1 of the PSN, 354 patients and caregivers responded to the research prioritization survey; the number of responses increased to 1034 in year 2. The majority of respondents had non-muscle-invasive bladder cancer (NMIBC), and the mean time since diagnosis was 5 years. Stakeholder-identified questions for noninvasive, invasive, and metastatic disease were prioritized by the PSN. Free-text questions were sorted with thematic mapping. Several questions submitted by respondents were among the prioritized research questions. A final prioritized list of research questions was disseminated to various funding agencies, and a highly ranked NMIBC research question was included as a priority area in the 2017 Patient-Centered Outcomes Research Institute announcement of pragmatic trial funding.Conclusions: Patient engagement is needed to identify high-priority research questions in oncology. The BCAN PSN provides a successful example of an engagement infrastructure for annual research prioritization in bladder cancer. The creation of an engagement network sets the groundwork for additional phases of engagement, including design, conduct, and dissemination. Cancer 2018. © 2018 American Cancer Society. [ABSTRACT FROM AUTHOR]

Self-perception of disease is increasingly recognized as a determinant of health. The Eating Assessment Tool-10 (EAT-10) is a functional health status questionnaire that measures the symptomatic severity of dysphagia from the patient's perspective. The objective of this work was to identify factors (demographics, clinical variables, swallowing physiology, health-related quality of life) associated with longitudinal change in EAT-10 scores in outpatients with oropharyngeal dysphagia at a multi-disciplinary, tertiary care clinic. All patients with swallowing concerns that were included in the UW Madison Voice and Swallowing Outcomes database from 12/2012 to 04/2015 were invited to complete EAT-10 and a general health-related quality of life survey (SF-12v2) at their initial evaluation and six months later. Forty-two patients were included in analysis (n = 42). Weaning from a gastrostomy tube was significantly associated with EAT-10 improvement. Approximately 70% of the sample had mild dysphagia, and floor effects were observed for all EAT-10 items in this sample subset. Mean SF-12v2 Physical Component Summary score was substantially lower than that of the general population. Significant, weak-moderate correlations were found between EAT-10 and SF-12v2 scores for all comparisons except for Physical Health Composite at six months (rs = = 0.24 to - 0.43). Weaning from a feeding tube appears to meaningfully improve self-perceived symptoms of dysphagia. Given the floor effects observed, validity of EAT-10 for patients with mild dysphagia should be examined. Future research should address contributors to self-perceived symptom change across the range of dysphagia severity. [ABSTRACT FROM AUTHOR]

The goal of patient-centered outcomes research (PCOR) is to help patients and those who care for them make informed decisions about healthcare. However, the clinical research enterprise has not involved patients, caregivers, and other nonproviders routinely in the process of prioritizing, designing, and conducting research in hematopoietic cell transplantation (HCT). To address this need the National Marrow Donor Program/Be The Match engaged patients, caregivers, researchers, and other key stakeholders in a 2-year project with the goal of setting a PCOR agenda for the HCT community. Through a collaborative process we identified 6 major areas of interest: (1) patient, caregiver, and family education and support; (2) emotional, cognitive, and social health; (3) physical health and fatigue; (4) sexual health and relationships; (5) financial burden; and (6) models of survivorship care delivery. We then organized into multistakeholder working groups to identify gaps in knowledge and make priority recommendations for critical research to fill those gaps. Gaps varied by working group, but all noted that a historical lack of consistency in measures use and patient populations made it difficult to compare outcomes across studies and urged investigators to incorporate uniform measures and homogenous patient groups in future research. Some groups advised that additional pre-emptory work is needed before conducting prospective interventional trials, whereas others were ready to proceed with comparative clinical effectiveness research studies. This report presents the results of this major initiative and makes recommendations by working group on priority questions for PCOR in HCT. [ABSTRACT FROM AUTHOR]

The compromise of quality of life in Huntington's disease is a major issue, both for individuals with the disease as well as for their caregivers. The International Parkinson and Movement Disorder Society commissioned a review of the use and clinimetric validation status of measures used in Huntington's disease to assess aspects related with quality of life and to make recommendations on their use following standardized criteria. We included both patient-centered measures (patient health-related quality-of-life measures) and caregiver-centered measures (caregiver quality-of-life measures). After conducting a systematic literature search, we included 12 measures of patient health-related quality of life and 2 measures of caregiver quality of life. Regarding patient-centered measures, the Medical Outcomes Study 36-Item Short-Form Health Survey is "recommended" as a generic assessment of health-related quality of life in patients with Huntington's disease. The 12-Item Short Form Health Survey, the Sickness Impact Profile, the 12-item World Health Organization Disability Assessment Schedule, and the Huntington's Disease Health-Related Quality of Life questionnaire are "suggested." No caregiver-centered quality-of-life measure obtained a "recommended" status. The Alzheimer's Carer's Quality of Life Inventory and the Huntington's Disease Quality of Life Battery for Carers are "suggested." Recognizing that the assessment of patient health-related quality of life can be challenging in Huntington's disease, as patients may lack insight and there is insufficient clinimetric testing of these scales, the committee concluded that further validation of currently available health-related quality-of-life measures should be undertaken, namely, those Huntington's disease-specific health-related quality-of-life measures that have recently been reported and used. © 2018 International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

The objective of this study was to assess the current use of patient-centered psychosocial assessments for the evaluation of children with central precocious puberty (CPP). Studies evaluating the psychosocial impact of CPP were identified through searches of the PubMed and Cochrane Library databases, ClinicalTrials.gov, a drug prescribing information database, and regulatory websites. Studies were screened using prespecified inclusion and exclusion criteria. Potentially relevant patient-centered outcome assessments (including patient-, parent- or observer-reported measures) used in the identified studies were evaluated in detail for their relevance in CPP. Of the 467 studies identified, 15 met the inclusion criteria. Frequently assessed concepts included depression and anxiety, behavior and behavioral problems, body image and self-esteem and personality type/characteristics. Among the assessments used in the identified studies, the Child Behavior Checklist, Pediatric Quality of Life Inventory (PedsQL), SF-10 for Children and Child Health Questionnaire were comprehensively evaluated. The PedsQL showed promise as a patient-centered outcome measure in CPP. Although there is a lack of validated tools measuring psychosocial health and health-related quality of life in patients with CPP, the PedsQL captures issues seen in this patient population and is relatively easy to administer. Further studies using this and other tools in children with CPP are needed. [ABSTRACT FROM AUTHOR]

Abstract: Objective: This study was performed to determine whether the distance between an implant and a tooth present in an inter‐proximal unit influenced the amount of marginal bone loss that occurred at the two facing (adjacent) surfaces. Materials and methods: One hundred and eighty patients with a total of 278 inter‐proximal units were included. Radiographs of implants that also included adjacent (facing) natural tooth/teeth were digitalized, and various linear measurements were performed using a software program. The marginal bone level and the bone level change that had occurred during a mean of 5.8 years were assessed as well as distance between the implant and the adjacent tooth/teeth. Results: The mean amount of additional marginal bone loss that took place during the observation period was about 0.4 mm at both implants and adjacent tooth surfaces. The horizontal distance between an implant and the facing tooth did not influence the amount of marginal bone loss that had occurred. In most inter‐proximal units, more advanced bone loss (>1 mm, >2 mm) had ensued either at the implant or at the facing tooth surface. Advanced additional bone loss occurred at both the implant and the tooth in only about 3% of the examined subjects. Conclusion: Bone loss at implants and teeth appears to be a site‐specific phenomenon and not dependent on the inter‐proximal distance. [ABSTRACT FROM AUTHOR]

Postoperative anemia is a common occurrence in surgical patients and leads to an increased risk for allogeneic blood transfusions. The efficacy of iron therapy in treating postoperative anemia has not been firmly established. The objective of this systematic review was to evaluate the efficacy of postoperative oral and intravenous (IV) iron therapy in increasing hemoglobin levels and improving patient outcomes following elective surgery. The databases Medline, EMBASE, CENTRAL, the Transfusion Evidence Library, and ClinicalTrials.gov were searched. Eligible studies were randomized controlled trials or prospective cohorts having a control group, where postoperative oral or IV iron was administered to elective surgery patients. Primary outcomes were hemoglobin levels and patient-centered outcomes of quality of life and functioning. Secondary outcomes were the safety of postoperative iron and blood transfusion requirement. Meta-analysis using a random-effects model was performed. Seventeen relevant studies were identified, of which 7 investigated IV iron, 7 investigated oral iron, and 3 compared IV with oral iron. Postoperative oral and IV iron therapies were ineffective in improving quality of life and functioning (the Grading of Recommendations Assessment, Development and Evaluation [GRADE]: moderate-low quality). Compared with control, IV iron increased mean hemoglobin levels by 3.40 g/L (95% confidence interval [CI]: 1.18-5.62) (GRADE: moderate quality); however, this increase is likely not clinically meaningful. Overall, oral iron was ineffective in increasing hemoglobin concentrations compared with control (mean difference = 0.77, 95% CI: −1.48-3.01) (GRADE: moderate quality). Postoperative iron therapy did not significantly reduce the risk of blood transfusion (relative risk = 0.75; 95% CI: 0.53-1.07) (GRADE: low quality). IV iron was not associated with a significantly increased risk of adverse events (relative risk = 4.50, 95% CI: 0.64-31.56). There was insufficient information to determine the risk of adverse events for postoperative oral iron. This systematic review found no evidence to support the routine use of postoperative iron therapy in all elective surgery patient populations; however, results are based largely on studies with non–iron-deficient patients preoperatively. Further research on the role of postoperative IV iron is warranted for certain high-risk groups, including patients with iron deficiency or anemia prior to surgery. This systematic review is registered in PROSPERO (CRD42017057837). [ABSTRACT FROM AUTHOR]

We aimed to explore the predictive value of screening for distress alone, hope alone, or a combination of both. In a multicenter prospective study, 37 English-speaking adolescents and young adults with cancer and 40 parents completed validated instruments at diagnosis (“baseline”) and 3–6 months later (“follow-up”). Correlated regression models described associations. Within each instrument, baseline and follow-up scores were associated. However, only a composite hope/distress score predicted all three patient-centered outcomes. Multidimensional screens incorporating positive and negative psychosocial constructs may predict patient-centered outcomes better than isolated, single-construct instruments. [ABSTRACT FROM PUBLISHER]

Purpose: Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Huntington disease (HD). The Neuro-QoL includes two patient-reported outcome (PRO) measures of cognition-Executive Function (EF) and General Concerns (GC). These measures have not previously been validated for use in HD. The purpose of this analysis is to evaluate the reliability and validity of the Neuro-QoL Cognitive Function measures for use in HD.Methods: Five hundred ten individuals with prodromal or manifest HD completed the Neuro-QoL Cognition measures, two other PRO measures of HRQOL (WHODAS 2.0 and EQ5D), and a depression measure (PROMIS Depression). Measures of functioning The Total Functional Capacity and behavior (Problem Behaviors Assessment) were completed by clinician interview. Objective measures of cognition were obtained using clinician-administered Symbol Digit Modalities Test and the Stroop Test (Word, Color, and Interference). Self-rated, clinician-rated, and objective composite scores were developed. We examined the Neuro-QoL measures for reliability, convergent validity, discriminant validity, and known-groups validity.Results: Excellent reliabilities (Cronbach's alphas ≥ 0.94) were found. Convergent validity was supported, with strong relationships between self-reported measures of cognition. Discriminant validity was supported by less robust correlations between self-reported cognition and other constructs. Prodromal participants reported fewer cognitive problems than manifest groups, and early-stage HD participants reported fewer problems than late-stage HD participants.Conclusions: The Neuro-QoL Cognition measures provide reliable and valid assessments of self-reported cognitive functioning for individuals with HD. Findings support the utility of these measures for assessing self-reported cognition. [ABSTRACT FROM AUTHOR]

Background To reduce the burden of chronic illness, prevention and management interventions must be efficacious, adopted and implemented with fidelity, and reach those at greatest risk. Yet, many research-tested interventions are slow to translate into practice. Purpose This paper describes how The University of North Carolina at Chapel Hill School of Nursing’s NINR-funded institutional pre- and postdoctoral research-training program is addressing the imperative to speed knowledge translation across the research cycle. Methods The training emphasizes six research methods (“catalysts”) to speed translation: stakeholder engagement, patient-centered outcomes, intervention optimization and sequential multiple randomized trials (SMART), pragmatic trials, mixed methods approaches, and dissemination and implementation science strategies. Catalysts are integrated into required coursework, biweekly scientific and integrative seminars, and experiential research training. Trainee and program success is evaluated based on benchmarks applicable to all PhD program students, supplemented by indicators specific to the catalysts. Trainees must also demonstrate proficiency in at least two of the six catalysts in their scholarly products. Proficiency is assessed through their works in progress presentations and peer reviews at T32 integrative seminars. Discussion While maintaining the emphasis on theory-based interventions, we have integrated six catalysts into our ongoing research training to expedite the dynamic process of intervention development, testing, dissemination and implementation. Conclusions Through a variety of training activities, our research training focused on theory-based interventions and the six catalysts will generate future nurse scientists who speed translation of theory-based interventions into practice to maximize health outcomes for patients, families, communities and populations affected by chronic illness. [ABSTRACT FROM AUTHOR]

Hospital-based palliative care (PC) linked to palliative home care is rarely accessible in low- and middle-income countries (LMICs). To study people-centered outcomes of a palliative home care team based at a major cancer center in Vietnam. The palliative home care team, consisting of at least one physician and one nurse, provided home PC when needed by patients of the cancer center who lived within 10 kilometers. A linguistically validated version of the African Palliative Outcomes Scale was integrated into standard clinical data collection. We retrospectively reviewed data from the 81 consecutive patients on prevalence and severity of pain and other types of physical, psycho-social, and spiritual suffering at the first home visit (baseline) and at the first follow-up visit and measured any differences. There was great demand for palliative home care. From baseline to follow-up, there was significant improvement in pain regardless of the baseline severity of pain (p < 0.003). Among patients with severe pain, breathlessness, nausea/vomiting, diarrhea, depression, or worry about illness at baseline, there was significant improvement (p < 0.001), and caregiver worry about the patient also improved significantly. Integration of hospital- and home-based PC for cancer patients is feasible and improves people-centered outcomes at low cost in Vietnam. These data suggest that benefits to patients, their families, and the health care system can accrue from integration of PC at all levels in Vietnam and other LMICs. [ABSTRACT FROM AUTHOR]

The movement toward a value-based health care market requires comparison of physicians, hospitals, and health systems. Traditionally, process-based measures such as infection and readmission rates have been used. However, these events are uncommon in shoulder and elbow surgery, thus limiting their utility. Patient-reported outcomes (PROs) are a promising measure of quality and have been proposed as a potential metric to compare surgeon performance. However, there are over 25 different PROs for shoulder and elbow conditions. Therefore, the American Shoulder and Elbow Surgeons Value Committee was established to recommend shoulder and elbow PROs in an effort to align their implementation for quality assessment. The committee developed criteria for assessing the outcome measures including that each measure should be patient reported, not requiring clinician input; have published validation and psychometrics; and be standardized and demonstrate ease of use for the patient and clinician. Two sets were suggested: one set for clinical implementation and a more robust set for research purposes. The final recommendation was that all patients should complete the Veterans Rand 12 for general health and the Single Assessment Numeric Evaluation for the specified body region. For patients with shoulder complaints, the American Shoulder and Elbow Surgeons score was recommended, and for those with elbow complaints, the Quick Disabilities of the Arm, Shoulder and Hand score was recommended. More robust disease-specific measures were provided for research purposes. Continued efforts should be made to align these measures across orthopedics to facilitate use of patient outcome measures as a component of value-based health care assessment. [ABSTRACT FROM AUTHOR]

Background: Pruritus is a distressing hallmark of the uremic condition, affecting approximately 60% of hemodialysis patients. Abnormal endogenous opioid ligand activity at μ and κ-opioid receptors has been postulated as a mechanism in uremic pruritus. Nalbuphine is a μ-opioid antagonist and κ-opioid agonist.Methods: In this multicenter, randomized, double-blind, placebo-controlled trial, 373 hemodialysis patients with moderate or severe uremic pruritus were randomized in a 1: 1:1 ratio to nalbuphine extended-release tablets 120 mg (NAL 120), 60 mg (NAL 60), or placebo and treated for 8 weeks. Three hundred seventy-one were analyzed for efficacy. The primary endpoint was the change from baseline to treatment weeks 7 and 8 in itching intensity on a Numerical Rating Scale (NRS, 0 [no itching]; 10 [worst possible itching]) using an intent-to-treat approach. The aim was to evaluate the safety and antipruritic efficacy of NAL.Results: The mean duration of itching was 3.2 years. From a baseline NRS of 6.9 (1.5), the mean NRS declined by 3.5 (2.4) and by 2.8 (2.2) in NAL 120 mg and the placebo groups, respectively (p = 0.017). There was no evidence of tolerance. A trend for less sleep disruption due to itching (p = 0.062, NAL 120 vs. placebo) was also observed. There were no significant differences between NAL 60 vs. placebo. Serious adverse events occurred in 6.7, 12.7, and 15.4% in the NAL 120, NAL 60, and placebo groups respectively.Conclusions: In this largest-to-date randomized controlled trial in uremic pruritus, NAL 120 durably and significantly reduced the itching intensity among hemodialysis patients. [ABSTRACT FROM AUTHOR]