Device-specific quality of life: Results from the ATLAS trial-Avoid Transvenous Leads in Appropriate Subjects.

AIM: Patient reported outcomes (PROs) provide important insights into patients' acceptance of their medical devices. ATLAS, a randomized, multi-center, open-label clinical trial, recently reported fewer perioperative complications in S-ICD compared to TV-ICD patients. This study reports PROs, including device-specific and generic quality of life (QOL) from the ATLAS trial. METHODS AND RESULTS: Device-specific QOL was the primary PRO using the Florida Patient Acceptance Survey (FPAS) at 1-and 6-months post-implantation. Secondary outcomes included generic QOL using the Medical Outcomes Survey (SF-36) pre-implant and 6-months post-implantation. FPAS and SF-36 were analyzed using ANCOVA. Pain measured using a Numeric Rating Scale, at 1-and 6-months, anesthetic, BMI and within/between differences were analyzed using descriptive statistics and mixed-effects linear models (MLM). Of the 503 patients randomized in ATLAS, 404 had complete FPAS data to include in this analysis. Participant characteristics were balanced. There were no significant differences between S-ICD and TV-ICD for FPAS or SF-36, across timepoints. Mean total FPAS scores increased from 73.73 (16.09) to 77.05 (16.13) and 74.43 (15.35) to 78.25 (15.88) for S-ICD and TV-ICD, respectively, (p <0.001). PROs suggested that both devices were associated with good QOL. CONCLUSION: Device-specific and generic QOL were similar between S-ICD and TV-ICD groups up to 6-months post-implantation indicating that regardless of device type, both groups reported good device specific QOL in ATLAS patients. S-ICD patients reported higher pain scores at implant, but pain decreased by 6 months. The findings offer evidence that can be included during shared decision-making. The inclusion of patient partners in ATLAS provided opportunity to measure PROs that were deemed important to patients.

Strategies for specialty training of healthcare professionals in low-resource settings: a systematic review on evidence from stroke care.

BACKGROUND: The greatest mortality and disability from stroke occurs in low- and middle-income countries. A significant barrier to implementation of best stroke care practices in these settings is limited availability of specialized healthcare training. We conducted a systematic review to determine the most effective methods for the provision of speciality stroke care education for hospital-based healthcare professionals in low-resource settings. METHODS: We followed the PRISMA guidelines for systematic reviews and searched PubMed, Web of Science and Scopus for original clinical research articles that described or evaluated stroke care education for hospital-based healthcare professionals in low-resource settings. Two reviewers screened titles/abstracts and then full text articles. Three reviewers critically appraised the articles selected for inclusion. RESULTS: A total of 1,182 articles were identified and eight were eligible for inclusion in this review; three were randomized controlled trials, four were non-randomized studies, and one was a descriptive study. Most studies used several approaches to education. A "train-the-trainer" approach to education was found to have the most positive clinical outcomes (lower overall complications, lengths of stay in hospital, and clinical vascular events). When used for quality improvement, the "train-the-trainer" approach increased patient reception of eligible performance measures. When technology was used to provide stroke education there was an increased frequency in diagnosis of stroke and use of antithrombotic treatment, reduced door-to-needle times, and increased support for decision making in medication prescription was reported. Task-shifting workshops for non-neurologists improved knowledge of stroke and patient care. Multidimensional education demonstrated an overall care quality improvement and increased prescriptions for evidence-based therapies, although, there were no significant differences in secondary prevention efforts, stroke reoccurrence or mortality rates. CONCLUSIONS: The "train the trainer" approach is likely the most effective strategy for specialist stroke education, while technology is also useful if resources are available to support its development and use. If resources are limited, basic knowledge education should be considered at a minimum and multidimensional training may not be as beneficial. Research into communities of practice, led by those in similar settings, may be helpful to develop educational initiatives with relevance to local contexts.

Perceived self-efficacy and empowerment in patients at increased risk of sudden cardiac arrest.

Background: The role of multidisciplinary clinics for psychosocial care is increasingly recognized for those living with inherited cardiac conditions (ICC). In Canada, access to healthcare providers differ between clinics. Little is known about the relationship between access to specialty care and a patient's ability to cope with, and manage their condition. Methods: We leveraged the Hearts in Rhythm Organization (HiRO) to conduct a cross-sectional, community-based survey of individuals with ICC and their family members. We aimed to describe access to services, and explore the relationships between participants' characteristics, cardiac history and self-reported health status and self-efficacy (GSE: General Self-Efficacy Scale) and empowerment (GCOS-24: Genetic Counseling Outcome Scale). Results: We collected 235 responses from Canadian participants in 10 provinces and territories. Overall, 63% of participants reported involvement of a genetic counsellor in their care. Access to genetic testing was associated with greater empowerment [mean GCOS-24: 121.14 (SD = 20.53) vs. 105.68 (SD = 21.69); p = 0.004]. Uncertain genetic test results were associated with lower perceived self-efficacy (mean GSE: uncertain = 28.85 vs. positive = 33.16, negative = 34.13; p = 0.01). Low global mental health scores correlated with both lower perceived self-efficacy and empowerment scores, with only 11% of affected participants reporting involvement of psychology services in their care. Conclusion: Differences in resource accessibility, clinical history and self-reported health status impact the perceived self-efficacy and empowerment of patients with ICC. Future research evaluating interventions to improve patient outcomes is recommended.

Perioperative Safety and Early Patient and Device Outcomes Among Subcutaneous Versus Transvenous Implantable Cardioverter Defibrillator Implantations : A Randomized, Multicenter Trial.

BACKGROUND: Implantable cardioverter defibrillators (ICDs) improve survival in patients at risk for cardiac arrest, but are associated with intravascular lead-related complications. The subcutaneous ICD (S-ICD), with no intravascular components, was developed to minimize lead-related complications. OBJECTIVE: To assess key ICD performance measures related to delivery of ICD therapy, including inappropriate ICD shocks (delivered in absence of life-threatening arrhythmia) and failed ICD shocks (which did not terminate ventricular arrhythmia). DESIGN: Randomized, multicenter trial. (ClinicalTrials.gov: NCT02881255). SETTING: The ATLAS trial. PATIENTS: 544 eligible patients (141 female) with a primary or secondary prevention indication for an ICD who were younger than age 60 years, had a cardiogenetic phenotype, or had prespecified risk factors for lead complications were electrocardiographically screened and 503 randomly assigned to S-ICD (251 patients) or transvenous ICD (TV-ICD) (252 patients). Mean follow-up was 2.5 years (SD, 1.1). Mean age was 49.0 years (SD, 11.5). MEASUREMENTS: The primary outcome was perioperative major lead-related complications. RESULTS: There was a statistically significant reduction in perioperative, lead-related complications, which occurred in 1 patient (0.4%) with an S-ICD and in 12 patients (4.8%) with TV-ICD (-4.4%; 95% CI, -6.9 to -1.9; P = 0.001). There was a trend for more inappropriate shocks with the S-ICD (hazard ratio [HR], 2.37; 95% CI, 0.98 to 5.77), but no increase in failed appropriate ICD shocks (HR, 0.61 (0.15 to 2.57). Patients in the S-ICD group had more ICD site pain, measured on a 10-point numeric rating scale, on the day of implant (4.2 ± 2.8 vs. 2.9 ± 2.2; P < 0.001) and 1 month later (1.3 ± 1.8 vs. 0.9 ± 1.5; P = 0.035). LIMITATION: At present, the ATLAS trial is underpowered to detect differences in clinical shock outcomes; however, extended follow-up is ongoing. CONCLUSION: The S-ICD reduces perioperative, lead-related complications without significantly compromising the effectiveness of ICD shocks, but with more early postoperative pain and a trend for more inappropriate shocks. PRIMARY FUNDING SOURCE: Boston Scientific.

Adult newcomers' perceptions of access to care and differences in health systems after relocation from Syria.

BACKGROUND: In Canada, approximately 13% of the population lives with multiple chronic conditions. Newcomers, including refugees, have the same or higher risk of developing chronic diseases as their host population. In 2015-2016, Canada welcomed almost 40, 000 newcomers from Syria. This study aimed to (1) understand adult newcomer health needs for self-management of non-infectious chronic conditions; and (2) identify strategies to improve access to health care services to meet these needs. METHODS: This study used a qualitative descriptive design. Interviews and focus groups were conducted with consenting newcomers, service providers and community agency administrators. Interview guides were developed with input from community partners and snowball sampling was used. RESULTS: Participants included 22 Syrian newcomers and 8 service providers/administrators. Findings revealed the initial year of arrival as one of multiple adjustments, often rendering chronic disease management to a lower priority. Self-care and self-management were not routinely incorporated into newcomer lives though community health agencies were proactive in creating opportunities to learn self-management practices. Gaps in access to care were prevalent, including mental health services which typically were not well developed for trauma and post-traumatic stress disorder (PTSD), particularly for men. Newcomers expressed frustration with lengthy wait times and not being able to access specialists directly. Youth frequently played a key role in translation and disseminating information about services to their families. CONCLUSION: Chronic disease management was a low priority for newcomers who were focussed on resettlement issues such as learning English or finding work. Provision of practical supports such as bus tickets, translation, and information about the healthcare system were identified as means of improving access to care.

Beyond Wellness Monitoring: Continuous Multiparameter Remote Automated Monitoring of Patients.

The pursuit of more efficient patient-friendly health systems and reductions in tertiary health services use has seen enormous growth in the application and study of remote patient monitoring systems for cardiovascular patient care. While there are many consumer-grade products available to monitor patient wellness, the regulation of these technologies varies considerably, with most products having little to no evaluation data. As the science and practice of virtual care continues to evolve, clinicians and researchers can benefit from an understanding of more comprehensive solutions capable of monitoring multiple biophysical parameters (eg, oxygen saturation, heart rate) continuously and simultaneously. These devices, herein referred to as continuous multiparameter remote automated monitoring (CM-RAM) devices, have the potential to revolutionise virtual patient care. Through seamless integration of multiple biophysical signals, CM-RAM technologies can allow for the acquisition of high-volume big data for the development of algorithms to facilitate early detection of negative changes in patient health status and timely clinician response. In this article, we review key principles, architecture, and components of CM-RAM technologies. Work to date in this field and related implications are also presented, including strategic priorities for advancing the science and practice of CM-RAM.

Continuous Noninvasive Remote Automated Blood Pressure Monitoring With Novel Wearable Technology: A Preliminary Validation Study.

BACKGROUND: Wearable continuous monitoring biosensor technologies have the potential to transform postoperative care with early detection of impending clinical deterioration. OBJECTIVE: Our aim was to validate the accuracy of Cloud DX Vitaliti continuous vital signs monitor (CVSM) continuous noninvasive blood pressure (cNIBP) measurements in postsurgical patients. A secondary aim was to examine user acceptance of the Vitaliti CVSM with respect to comfort, ease of application, sustainability of positioning, and aesthetics. METHODS: Included participants were ≥18 years old and recovering from surgery in a cardiac intensive care unit (ICU). We targeted a maximum recruitment of 80 participants for verification and acceptance testing. We also oversampled to minimize the effect of unforeseen interruptions and other challenges to the study. Validation procedures were according to the International Standards Organization (ISO) 81060-2:2018 standards for wearable, cuffless blood pressure (BP) measuring devices. Baseline BP was determined from the gold-standard ICU arterial catheter. The Vitaliti CVSM was calibrated against the reference arterial catheter. In static (seated in bed) and supine positions, 3 cNIBP measurements, each 30 seconds, were taken for each patient with the Vitaliti CVSM and an invasive arterial catheter. At the conclusion of each test session, captured cNIBP measurements were extracted using MediCollector BEDSIDE data extraction software, and Vitaliti CVSM measurements were extracted to a secure laptop through a cable connection. The errors of these determinations were calculated. Participants were interviewed about device acceptability. RESULTS: The validation analysis included data for 20 patients. The average times from calibration to first measurement in the static position and to first measurement in the supine position were 133.85 seconds (2 minutes 14 seconds) and 535.15 seconds (8 minutes 55 seconds), respectively. The overall mean errors of determination for the static position were -0.621 (SD 4.640) mm Hg for systolic blood pressure (SBP) and 0.457 (SD 1.675) mm Hg for diastolic blood pressure (DBP). Errors of determination were slightly higher for the supine position, at 2.722 (SD 5.207) mm Hg for SBP and 2.650 (SD 3.221) mm Hg for DBP. The majority rated the Vitaliti CVSM as comfortable. This study was limited to evaluation of the device during a very short validation period after calibration (ie, that commenced within 2 minutes after calibration and lasted for a short duration of time). CONCLUSIONS: We found that the Cloud DX's Vitaliti CVSM demonstrated cNIBP measurement in compliance with ISO 81060-2:2018 standards in the context of evaluation that commenced within 2 minutes of device calibration; this device was also well-received by patients in a postsurgical ICU setting. Future studies will examine the accuracy of the Vitaliti CVSM in ambulatory contexts, with attention to assessment over a longer duration and the impact of excessive patient motion on data artifacts and signal quality. TRIAL REGISTRATION: ClinicalTrials.gov NCT03493867; https://clinicaltrials.gov/ct2/show/NCT03493867.

Testing a nurse-led, pre-implantation educational intervention for primary prevention implantable cardioverter-defibrillator candidates: a randomized feasibility trial.

AIMS: Implantable cardioverter-defibrillators (ICDs) deliver therapy for life-threatening arrhythmias. Evidence suggests that ICD candidates have misconceptions regarding ICD therapy and unmet information needs. We undertook a pilot feasibility trial comparing a nurse-led educational intervention plus standard care, vs. standard pre-ICD implantation care. Secondary aims included examination of anxiety, quality of life, and shock anxiety. METHODS AND RESULTS: Implantable cardioverter-defibrillator candidates were consented and randomized to standard pre-ICD implantation care vs. standard care plus a nurse-led educational intervention. The primary feasibility outcomes included: recruitment rate, consent rate, randomization rate, proportion of participants able to complete all questionnaires, time to deliver intervention, and intervention topics completion. At baseline, demographic and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety scores were collected. Four weeks post-ICD implantation, participants completed the PROMIS, Florida Patient Acceptance Survey (FPAS), and Florida Shock Anxiety Scale (FSAS). Twenty patients consented (10 per group). Feasibility targets were achieved for all but two outcomes: consent rate was 87% vs. 95% target, and completion of data collection measures was 85% vs. 90% target. Consent rate was lower than expected as one patient declined, and two could not be approached. Completion rate was lower than expected as two patients were lost to follow-up, and one did not receive an ICD during the study period, leading to incomplete post-implantation survey collections. CONCLUSION: The results demonstrate the feasibility of conducting a trial comparing a nurse-led pre-implantation educational intervention to standard care in an outpatient setting. Further study to evaluate the effectiveness of this intervention on patient-reported outcomes is warranted.

Decision Support for Implantable Cardioverter-Defibrillator Replacement: A Pilot Feasibility Randomized Controlled Trial.

BACKGROUND: Decision support can help patients facing implantable cardioverter-defibrillator (ICD) replacement understand their options and reach an informed decision reflective of their preferences. OBJECTIVE: The aim of this study was to evaluate the feasibility of a decision support intervention for patients faced with the decision to replace their ICD. METHODS: A pilot feasibility randomized trial was conducted. Patients approaching ICD battery depletion were randomized to decision support intervention or usual care. Feasibility outcomes included recruitment rates, intervention use, and completeness of data; secondary outcomes were knowledge, values-choice concordance, decisional conflict, involvement in decision making, and choice. RESULTS: A total of 30 patients were randomized to intervention (n = 15) or usual care (n = 15). The intervention was used as intended, with 2% missing data. Patients in the intervention arm had better knowledge (77.4% vs 51.1%; P = .002). By 12 months, 8 of 13 (61.5%) in the intervention arm and 10 of 14 (71.4%) in the usual care arm accepted ICD replacement; 1 per arm declined (7.7% vs 7.1%, respectively). CONCLUSION: It was feasible to deliver the intervention, collect data, despite slow recruitment. The decision support intervention has the potential to improve ICD replacement decision quality.

Diabetes knowledge, risk perception, and quality of life among South Asian caregivers in young adulthood.

INTRODUCTION: Persons of South Asian descent have a higher prevalence of type 2 diabetes mellitus (T2DM). The management of T2DM in the South Asian community has required the support of adult children, potentially impacting the quality of life, diabetes-related knowledge, and risk perception among these caregivers. RESEARCH DESIGN AND METHODS: To investigate diabetes-related knowledge, quality of life, risk perception, and actual risk of developing diabetes among South Asian young adults whose parents are living with T2DM. A cross-sectional study was conducted (n=150). An online survey was administered. Data were analyzed with descriptive and inferential statistics. RESULTS: There was a statistically significant difference in diabetes-related knowledge between males and females (p<0.001). Males (in comparison to females) had a lower risk perception of developing diabetes (p=0.06). Further, risk perception and diabetes-related knowledge were positively associated with caregiver's physical health (p=0.002). CONCLUSION: Findings highlight the importance of providing gender-specific and culturally tailored diabetes educational interventions.

Impact of nurse scientist-led digital health interventions on management of chronic conditions.

BACKGROUND: Chronic conditions are a major contributor to the burden of disease worldwide. Using innovative digital health technologies, nurse scientists are well-positioned to lead efforts to reduce the burden of chronic conditions on individuals, communities, and systems. PURPOSE: The purpose of this review was to summarize the outcomes commonly measured in nurse-led digital health interventions that target chronic conditions and pose recommendations for the education of future nurse scientists to lead these studies. METHODS: A rapid review of the literature was completed using CINAHL and Ovid Emcare. Studies were included if the research: a) was led by a nurse; b) described outcomes of a digital health intervention; and c) included any population with a prevalent chronic condition. FINDINGS: 26 studies were included in this review. Nurse-led digital health interventions are being used to support and manage a range of chronic conditions in varied settings. DISCUSSION: Digital health interventions are changing the delivery of healthcare for individuals living with chronic conditions. These interventions are bridging the gaps between the digital and physical worlds and are rapidly evolving. CONCLUSION: The recommendations posed in this review reiterate the importance of robust content and methods education for nurse scientists to address future research needs in a digital era.

Health-Related Quality of Life in Patients With Atrial Fibrillation Treated With Catheter Ablation or Antiarrhythmic Drug Therapy: A Systematic Review and Meta-analysis.

BACKGROUND: Catheter ablation (CA) is performed in patients with atrial fibrillation (AF) to reduce symptoms and improve health-related quality of life (HRQL). METHODS: This systematic review and meta-analysis of randomized controlled trials (RCTs) evaluated CA of any energy modality compared with antiarrhythmic drugs (AADs) using inverse-variance random-effects models. We searched for RCTs reporting HRQL and AF-related symptoms at 3, 6, 12, 24, 48, and 60 months after treatment as well as the number of repeat ablations. RESULTS: Of 15,878 records, we included 13 RCTs of CA vs AADs for the analyses of HRQL, 7 RCTs for the analyses of AF-related symptoms, and 13 RCTs for the number of repeat ablations. For the HRQL analyses at 3 months, there were significant increases in both the Physical Component Summary score (3 months' standardized mean difference = 0.58 [0.39-0.78]; P < 0.00001, I 2 = 6%, 3 trials, n = 443) and the Mental Component Summary score (3 months' standardized mean difference = 0.57 [0.37-0.77]; P < 0.00001, I 2 = 0%, 3 trials, n = 443), favouring CA over AADs. These differences were sustained at 12 months but not >24 months after randomization. Similar results were seen for AF-related symptoms. The number of repeat ablations and success rates after procedure varied considerably across trials. CONCLUSIONS: Evidence from few trials suggests that CA improves physical and mental health and AF-related symptoms in the short term, but these benefits decrease with time. More trials, reporting both HRQL and AF-related symptoms, at consistent time points are needed to assess the effectiveness of CA for the treatment of AF.

CONTEXTE: L'ablation par cathéter (AC) est réalisée chez les patients atteints de fibrillation auriculaire (FA) afin d'atténuer les symptômes et d'améliorer la qualité de vie liée à la santé (QVLS). MÉTHODOLOGIE: Cette revue systématique et méta-analyse d'essais contrôlés à répartition aléatoire (ECRA) a permis d'évaluer l'AC, toutes modalités énergétiques confondues, comparativement aux agents antiarythmiques (AA) à l'aide de modèles à effets aléatoires à variance inverse. Nous avons recherché les ECRA qui faisaient état de la QVLS et des symptômes liés à la FA à 3, 6, 12, 24, 48 et 60 mois après le traitement et qui précisaient le nombre d'ablations répétées. RÉSULTATS: À partir de 15 878 entrées, nous avons retenu 13 ECRA comparant l'AC à des AA pour l'analyse de la QVLS, 7 autres pour l'analyse des symptômes liés à la FA et 13 de plus aux fins de calcul du nombre d'ablations répétées. L'analyse de la QVLS à 3 mois indique une augmentation significative du score sommaire de la composante physique (différence moyenne normalisée à 3 mois = 0,58 [0,39-0,78]; p < 0,00001, I 2 = 6 %, 3 essais, n = 443) et du score sommaire de la composante mentale (différence moyenne normalisée à 3 mois = 0,57 [0,37-0,77]; p < 0,00001, I 2 = 0 %, 3 essais, n = 443), faisant pencher la balance en faveur de l'AC plutôt que des AA. Ces différences persistaient à 12 mois après la répartition aléatoire, mais pas aux moments d'évaluation ultérieurs (24, 48 et 60 mois). Des résultats similaires ont été observés au chapitre des symptômes liés à la FA. Le nombre d'ablations répétées et le taux de réussite postopératoire variaient considérablement d'un essai à l'autre. CONCLUSIONS: Les données probantes de quelques essais donnent à penser que l'AC améliore la santé physique et mentale ainsi que les symptômes liés à la FA à court terme, mais que ces bienfaits s'atténuent avec le temps. D'autres essais faisant état de la QVLS et des symptômes liés à la FA, à des moments d'évaluation constants, devront être réalisés pour évaluer l'efficacité réelle de l'AC dans le traitement de la FA.

Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research.

BACKGROUND: Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured. OBJECTIVE: Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships. SEARCH STRATEGY: A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand-searched. INCLUSION CRITERIA: Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach. MAIN RESULTS: Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles. DISCUSSION: Addressing power dynamics in patient partner-researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research. CONCLUSIONS: Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.

Transition Experiences of Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: An Interpretive Description Study.

INTRODUCTION: Family caregivers provide most of the care for older persons living with dementia (PLWD) and multiple chronic conditions (MCCs) in the community. Caregivers experience transitions, such as changes to their health, roles, and responsibilities, during the process of caring. Transitions encompass a time when caregivers undergo stressful responses to change. However, we know little about the transition experiences of caregivers of persons living with both dementia and MCCs. OBJECTIVE: This qualitative study explored the transition experiences of caregivers of PLWD within the context of MCCs, from the perspective of both caregivers and practitioners. The research question was the following: What are the transition experiences of family caregivers in providing care to older PLWD and MCCs living in the community? METHODS: This study was conducted using an interpretive description approach. Semistructured interviews were conducted with 19 caregivers of older community-dwelling PLWD and MCCs and 7 health-care providers working with caregivers in Ontario, Canada. Concurrent data collection and inductive data analysis were used. RESULTS: Caregivers of older PLWD and MCCs experienced four key transitions: (a) taking on responsibility for managing multiple complex conditions, (b) my health is getting worse, (c) caregiving now defines my social life, and (d) expecting that things will change. Findings highlight how the coexistence of MCCs with dementia complicates caregiver transitions and the importance of social networks for facilitating transitions. CONCLUSION: The study provided insight on the transition experiences of caregivers of older PLWD and MCCs. MCCs increased the care load and further complicated caregivers' transition experiences. Health-care providers, such as nurses, can play important roles in supporting caregivers during these transitions and engage them as partners in care.

Assessing Swallowing of the Breastfeeding NICU Infant Using Fiberoptic Endoscopic Evaluation of Swallowing: A Feasibility Study.

BACKGROUND: Premature infants may demonstrate feeding difficulties requiring an instrumental swallowing assessment. Fiberoptic endoscopic evaluation of swallowing (FEES) is one assessment that can evaluate bottle feeding and breastfeeding. PURPOSE: This pilot study investigated the safety and feasibility of FEES for neonatal intensive care unit (NICU) infants during breastfeeding. METHODS: The setting for this prospective, descriptive study was an urban level III NICU that provided care for premature and critically ill infants. Participants were 5 infants recruited from a convenience sample who were at least 37 weeks postmenstrual age, demonstrated feeding difficulties during a bedside feeding and swallowing examination, and were breastfeeding. Each participant received a FEES assessment while breastfeeding (FEES-B). Adverse events and vital signs including prefeeding and postfeeding respiratory rate, heart rate, and oxygen saturation level were recorded to assess safety. Visualization of milk, laryngeal penetration, and tracheal aspiration assessed feasibility. RESULTS: Participants had a mean postmenstrual age of 39.8 weeks. No adverse events, including epistaxis or laryngospasm, were reported; there were no instances of autonomic instability; and there were no statistically significant differences between prefeeding and postfeeding respiratory rate, heart rate, or oxygen saturation level. Two infants successfully breastfed during FEES-B. Human milk was observable, and laryngeal penetration was noted with 1 infant. IMPLICATION FOR PRACTICE: FEES-B was found to be safe, with limited data supporting feasibility. Infants demonstrated no physiologic instability during FEES-B, and milk was visualized in the pharynx during breastfeeding with 2 infants. IMPLICATION FOR RESEARCH: Further studies are warranted to assess effectiveness of FEES-B in infants.

Comparing videofluoroscopy and endoscopy to assess swallowing in bottle-fed young infants in the neonatal intensive care unit.

OBJECTIVE: To determine the diagnostic accuracy of videofluoroscopy (VFSS) and endoscopy (FEES) in detecting laryngeal penetration and tracheal aspiration in bottle-fed young infants in the NICU. STUDY DESIGN: VFSS and FEES findings of 22 infants were compared to each other and to a composite reference standard in this prospective study. Sensitivity, specificity, positive and negative predictive values were calculated for each assessment. RESULT: Agreement between VFSS and FEES was high (92%) for aspiration and moderate (56%) for penetration, with FEES detecting more instances of penetration. Compared to the composite reference standard, FEES had greater sensitivity and a higher negative predictive value for penetration than VFSS. Because of the low prevalence of aspiration, diagnostic accuracy could not be determined for aspiration for either assessment. CONCLUSION: FEES appears to be more accurate in detecting penetration in this population, and both assessments are valuable tools in a comprehensive feeding and swallowing evaluation.

Examination of psychological risk factors for chronic pain following cardiac surgery: protocol for a prospective observational study.

INTRODUCTION: Approximately 400 000 Americans and 36 000 Canadians undergo cardiac surgery annually, and up to 56% will develop chronic postsurgical pain (CPSP). The primary aim of this study is to explore the association of pain-related beliefs and gender-based pain expectations on the development of CPSP. Secondary goals are to: (A) explore risk factors for poor functional status and patient-level cost of illness from a societal perspective up to 12 months following cardiac surgery; and (B) determine the impact of CPSP on quality-adjusted life years (QALYs) borne by cardiac surgery, in addition to the incremental cost for one additional QALY gained, among those who develop CPSP compared with those who do not. METHODS AND ANALYSES: In this prospective cohort study, 1250 adults undergoing cardiac surgery, including coronary artery bypass grafting and open-heart procedures, will be recruited over a 3-year period. Putative risk factors for CPSP will be captured prior to surgery, at postoperative day 3 (in hospital) and day 30 (at home). Outcome data will be collected via telephone interview at 6-month and 12-month follow-up. We will employ generalised estimating equations to model the primary (CPSP) and secondary outcomes (function and cost) while adjusting for prespecified model covariates. QALYs will be estimated by converting data from the Short Form-12 (version 2) to a utility score. ETHICS AND DISSEMINATION: This protocol has been approved by the responsible bodies at each of the hospital sites, and study enrolment began May 2015. We will disseminate our results through CardiacPain.Net, a web-based knowledge dissemination platform, presentation at international conferences and publications in scientific journals. TRIAL REGISTRATION NUMBER: NCT01842568.

Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?

PLAIN ENGLISH SUMMARY: There have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to poor patient outcomes. In addition, there are also concerns that research is being undertaken that does not reflects the realities or needs of those using healthcare services, and that the use of research findings in practice is slow. As such, shared approaches to research, such as integrated knowledge translation, are being used.Integrated knowledge translation (IKT) is a research approach that brings together researchers, along with other stakeholders that have knowledge about a particular healthcare issue. Stakeholders may include healthcare providers and policy-makers. More recently, there has been a growing awareness of the need to include patients and members of the public within research processes. These collaborative and patient-oriented research approaches are seen as a way to develop research that tackles ongoing gaps in practice and reflect the insights, needs and priorities of those most affected by health research outcomes. Despite great support, little is known about how these major research approaches are connected, or how they may bring about improvements in the development and use of research evidence. In this paper, we examine how IKT and patient engagement processes are linked, as well as exploring where differences exist. Through this, we highlight opportunities for greater patient engagement in IKT research and to identify areas that need to be understood further. ABSTRACT: Healthcare organizations across the world are being increasingly challenged to develop and implement services that are evidence-based and bring about improvement in patient and health service outcomes. Despite an increasing emphasis upon evidence-based practice, large variations in practice remain and gaps pervade in the creation and application of knowledge that improves outcomes. More collaborative models of health research have emerged over recent years, including integrated knowledge translation (IKT), whereby partnerships with key knowledge users are developed to enhance the responsiveness and application of the findings. Likewise, the meaningful engagement of patients, in addition to the inclusion of patient-reported outcomes and priorities, has been hailed as another mechanism to improve the relevance, impact and efficiency of research.Collectively, both IKT and patient engagement processes provide a vehicle to support research that can address health disparities and improve the delivery of effective and responsive healthcare services. However, the evidence to support their impact is limited and while these approaches are inextricably connected through their engagement focus, it is unclear how IKT and patient engagement processes are linked conceptually, theoretically, and practically. In this paper, we will begin to critically examine some of the linkages and tensions that exist between IKT and patient-engagement for research and will examine potential opportunities for IKT researchers as they navigate and enact meaningful partnerships with patients and the public.