Patient-important upper gastrointestinal bleeding in the ICU: A mixed-methods study of patient and family perspectives.

INTRODUCTION: The objective of this study was to create a definition of patient-important upper gastrointestinal bleeding during critical illness as an outcome for a randomized trial. DESIGN: This was a sequential mixed-methods qualitative-dominant multi-center study with an instrument-building aim. In semi-structured individual interviews or focus groups we elicited views from survivors of critical illness and family members of patients in the intensive care unit (ICU) regarding which features indicate important gastrointestinal bleeding. Quantitative demographic characteristics were collected. We analyzed qualitative data using inductive content analysis to develop a definition for patient-important upper gastrointestinal bleeding. SETTING: Canada and the United States. PARTICIPANTS: 51 ICU survivors and family members of ICU patients. RESULTS: Participants considered gastrointestinal bleeding to be important if it resulted in death, disability, or prolonged hospitalization. The following also signaled patient-important upper gastrointestinal bleeding: blood transfusion, vasopressors, endoscopy, CT-angiography, or surgery. Whether an intervention evinced concern depended on its effectiveness, side-effects, invasiveness and accessibility; contextual influences included participant familiarity and knowledge of interventions and trust in the clinical team. CONCLUSIONS: Survivors of critical illness and family members described patient-important upper gastrointestinal bleeding differently than current definitions of clinically-important upper gastrointestinal bleeding.

Post-Intensive Care Sequelae in Pediatrics-Results of an Early Rehabilitation Implementation Study.

OBJECTIVES: To compare post-PICU discharge functioning, health-related quality of life (HRQL), and parental stress before and after the implementation of an early rehabilitation bundle. DESIGN AND SETTING: Prospective cohort substudy within an early rehabilitation implementation program, conducted at the PICUs at McMaster Children's Hospital and London Health Sciences, London, Ontario, Canada. INTERVENTIONS: A bundle consisting of: 1) analgesia-first sedation; 2) delirium monitoring and prevention; and 3) early mobilization. Patients with an anticipated 48-hour PICU length of stay were approached for consent to participate. PATIENTS: Critically ill children with an anticipated 48-hour PICU length of stay were approached for consent to participate. MEASUREMENTS AND MAIN RESULTS: Patient-/proxy-reported outcome measures were assessed at baseline, PICU discharge, and 1 and 3 months post-PICU discharge using: 1) Pediatric Evaluation of Disability Inventory Computer Adaptive Test to assess physical, social, cognitive, and responsibility/caregiver domains of functioning; 2) KIDSCREEN to assess HRQL; and 3) the Pediatric Inventory for Parents to assess caregiver stress. A total of 117 participants were enrolled. Patient demographic characteristics were similar in the pre- and post-intervention groups. Following bundle implementation, 30 of 47 respondents (63.8%) experienced functional decline and 18 of 45 (40%) experienced low HRQL at PICU discharge. Eighteen of 36 (50%) at 1 month and 14 of 38 (36.8%) at 3 months experienced either persistent functional decline and/or low HRQL; 2.8% and 2.6% at 1- and 3-month follow-up, respectively, experienced both persistent functional decline and low HRQL. There were no significant differences in the rates of persistent functional decline, low HRQL, or caregiver stress scores post-bundle compared with pre-rehabilitation bundle implementation. CONCLUSIONS: We were unable to adequately determine the efficacy of a rehabilitation bundle on patient-centered outcomes as this substudy was not powered for these outcomes. Our results did reveal that persistent low functioning is common in PICU survivors, more common than low HRQL, while experiencing both functional decline and low HRQL was uncommon.

Early Rehabilitation in Critically ill Children: A Two Center Implementation Study.

OBJECTIVES: To implement an early rehabilitation bundle in two Canadian PICUs. DESIGN AND SETTING: Implementation study in the PICUs at McMaster Children's Hospital (site 1) and London Health Sciences (site 2). PATIENTS: All children under 18 years old admitted to the PICU were eligible for the intervention. INTERVENTIONS: A bundle consisting of: 1) analgesia-first sedation; 2) delirium monitoring and prevention; and 3) early mobilization. MEASUREMENTS AND MAIN RESULTS: Primary outcomes were the duration of implementation, bundle compliance, process of care, safety, and the factors influencing implementation. Secondary endpoints were the impact of the bundle on clinical outcomes such as pain, delirium, iatrogenic withdrawal, ventilator-free days, length of stay, and mortality. Implementation occurred over 26 months (August 2018 to October 2020). Data were collected on 1,036 patients representing 4,065 patient days. Bundle compliance was optimized within 6 months of roll-out. Goal setting for mobilization and level of arousal improved significantly (p < 0.01). Benzodiazepine, opioid, and dexmedetomidine use decreased in site 1 by 23.2% (95% CI, 30.8-15.5%), 26.1% (95% CI, 34.8-17.4%), and 9.2% (95% CI, 18.2-0.2%) patient exposure days, respectively, while at site 2, only dexmedetomidine exposure decreased significantly by 10.5% patient days (95% CI, 19.8-1.1%). Patient comfort, safety, and nursing workload were not adversely affected. There was no significant impact of the bundle on the rate of delirium, ventilator-free days, length of PICU stay, or mortality. Key facilitators to implementation included institutional support, unit-wide practice guidelines, dedicated PICU educators, easily accessible resources, and family engagement. CONCLUSIONS: A rehabilitation bundle can improve processes of care and reduce patient sedative exposure without increasing patient discomfort, nursing workload, or harm. We did not observe an impact on short-term clinical outcomes. The efficacy of a PICU-rehabilitation bundle requires ongoing study. Lessons learned in this study provide evidence to inform rehabilitation implementation in the PICU setting.

What counts as patient-important upper gastrointestinal bleeding in the ICU? A mixed-methods study protocol of patient and family perspectives.

INTRODUCTION: Clinically important upper gastrointestinal bleeding is conventionally defined as bleeding accompanied by haemodynamic changes, requiring red blood cell transfusions or other invasive interventions. However, it is unclear if this clinical definition reflects patient values and preferences. This protocol describes a study to elicit views from patients and families regarding features, tests, and treatments for upper gastrointestinal bleeding that are important to them. METHODS AND ANALYSIS: This is a sequential mixed-methods qualitative-dominant multi-centre study with an instrument-building aim. We developed orientation tools and educational materials in partnership with patients and family members, including a slide deck and executive summary. We will invite intensive care unit (ICU) survivors and family members of former ICU patients to participate. Following a virtual interactive presentation, participants will share their perspectives in an interview or focus group. Qualitative data will be analysed using inductive qualitative content analysis, wherein codes will be derived directly from the data rather than using preconceived categories. Concurrent data collection and analysis will occur. Quantitative data will include self-reported demographic characteristics. This study will synthesise the values and perspectives of patients and family members to create a new trial outcome for a randomised trial of stress ulcer prophylaxis. This study is planned for May 2022 to August 2023. The pilot work was completed in Spring 2021. ETHICS AND DISSEMINATION: This study has ethics approval from McMaster University and the University of Calgary. Findings will be disseminated via manuscript and through incorporation as a secondary trial outcome on stress ulcer prophylaxis. TRIAL REGISTRATION NUMBER: NCT05506150.

Validation of an Instrument to Measure Family Engagement in Acute Cardiac Care.

Background: Engaging families in care leads to improved patient- and family-centreed outcomes and is recommended by cardiovascular societies. However, no validated tools are currently available to measure family engagement in acute cardiac care. We previously described the development of the FAMily Engagement (FAME) instrument. The purpose of this study is to validate the FAME instrument in acute cardiac care. Methods: The FAME questionnaire was administered to family members of patients in a cardiovascular intensive care unit and ward at an academic tertiary care hospital in Montreal, Canada. After hospital discharge, we assessed family satisfaction in the intensive care unit (FS-ICU) and mental health (using the Hospital Anxiety and Depression Scale [HADS]). Higher FAME scores indicate increased care engagement. Reliability was assessed using internal consistency testing. Predictive validity was evaluated by assessing the relationship between the FAME score and the FS-ICU score and whether the FAME score was correlated with the HADS score. Convergent validity was assessed by comparing the FAME score with engagement elements of the FS-ICU score. Results: A total of 160 family participants were included (age 54.8 ± 14.8 years; 66% women; 36% non-White). The most common relationships to the patient were spouse/partner and adult child (both n = 62; 39%). The mean FAME score was 70.8 ± 16.0. The FAME instrument had high internal consistency (Cronbach's a = 0.86). The FAME score was associated with family satisfaction in the multivariable analysis (P < 0.001). No correlation occurred between FAME and HADS anxiety or depression scores. Conclusions: The FAME tool demonstrated reliability and convergent and predictive validity in the acute care cardiac population. Further research is needed to explore whether selected engagement interventions can impact the FAME score favourably.

Contexte: La participation des familles aux soins entraîne une amélioration des résultats centrés sur le patient et sur la famille et est recommandée par les sociétés cardiovasculaires. Cependant, il n'existe actuellement aucun outil validé pour mesurer la participation des familles aux soins cardiaques aigus. Par le passé, nous avons décrit l'élaboration de l'instrument FAMily Engagement (FAME). L'étude dont il est question ici vise à valider l'instrument FAME en contexte de soins cardiaques aigus. Méthodologie: Nous avons soumis le questionnaire FAME aux proches des patients admis aux soins intensifs cardiovasculaires et à l'unité de soins cardiovasculaires dans un hôpital universitaire de soins tertiaires à Montréal, au Canada. Lorsque le patient a reçu son congé de l'hôpital, nous avons évalué la satisfaction de la famille à l'égard de l'unité des soins intensifs (FS-ICU, de l'anglais : family satisfaction in the intensif care unit) de même que l'état de santé mentale (à l'aide de l'échelle d'anxiété et de dépression en milieu hospitalier [EHAD]). Un score élevé au questionnaire FAME indiquait une participation plus active aux soins. La fiabilité a été évaluée selon la méthode de cohérence interne. Pour mesurer la validité prédictive, nous avons étudié le lien entre le score au questionnaire FAME et le score FS-ICU, et déterminé si le score au questionnaire FAME était corrélé au score à l'EHAD. La validité convergente a été évaluée en comparant le score du questionnaire FAME avec les composantes de la participation du score FS-ICU. Résultats: Au total, 160 participants ont été inclus (âge : 54,8 ± 14,8 ans; 66 % de femmes; 36 % de personnes non blanches). En général, les participants étaient soit les conjoint(e)s/partenaires des patients, soit les enfants adultes des patients (n = 62 pour chacun des deux cas; 39 %). Le score FAME moyen était de 70,8 ± 16,0. L'instrument FAME présentait une forte cohérence interne (a de Cronbach = 0,86). Le score FAME était associé à la satisfaction familiale dans l'analyse multivariée (p < 0,001). Aucune corrélation n'a été notée entre le score FAME et les scores de dépression ou d'anxiété de l'EHAD. Conclusions: L'outil FAME a présenté une fiabilité et une validité convergente et prédictive dans la population des patients recevant des soins cardiaques aigus. D'autres recherches sont nécessaires pour déterminer si certaines interventions relatives à la participation peuvent améliorer le score FAME.

Development of a Family Engagement Measure for the Intensive Care Unit.

Introduction: Family engagement is a goal of care delivery in the intensive care unit (ICU). However, currently, no validated instrument for the ICU is designed specifically to measure family engagement. Our objective was to develop a novel family engagement measure. Methods: The Family Engagement (FAME) tool was developed through an iterative process, with input from experts, family members, and end-users. The FAME questionnaire is composed of 12 items. Each item is scored using a 5-point Likert scale and transformed onto a 0-100-point range, with higher scores indicating greater engagement. We performed a single-site pilot study for family members of patients in a cardiovascular ICU. Results: The FAME tool had a high construct validity and required an average of 3.33 minutes to complete. A total of 32 family members completed the FAME questionnaire (mean age: 52.4 ± 14.2 years; 71.4% female; 47% adult child ; 31% spouse/partner). The overall mean FAME score was 84.0% ± 25.2%. Differences in engagement across various domains were identified. Conclusions: The FAME measure is a focused and pragmatic tool to measure the degree and type of family engagement in care of patients in the ICU. Further studies are needed to evaluate the FAME tool in a larger population.

Introduction: La participation de la famille est un objectif établi dans la prestation de soins dans les unités de soins intensifs (USI). Pourtant, il n'existe actuellement aucun instrument validé conçu précisément pour mesurer la participation des familles dans les USI. Notre objectif était d'élaborer une nouvelle façon de mesurer la participation des familles. Méthodologie: L'outil Family Engagement (FAME; participation de la famille) a été conçu par un processus itératif, avec la collaboration d'experts, de membres de familles et d'utilisateurs des services. Le questionnaire FAME comporte 12 éléments. Chaque élément est noté à l'aide d'une échelle de Likert en 5 points et transposé en un score de 0 à 100, un score plus élevé indiquant une plus grande participation. Nous avons réalisé une étude pilote dans un seul établissement auprès des membres de la famille de patients d'une USI en cardiologie. Résultats: L'outil FAME avait une bonne validité conceptuelle et nécessitait en moyenne 3,33 minutes à remplir. Au total, 32 membres de la famille ont rempli le questionnaire FAME (âge moyen : 52,4 ± 14,2 ans; 71,4 % de femmes; 47 % d'enfants adultes; 31 % de conjoints). Le score FAME moyen global a été de 84,0 % ± 25,2 %. Des différences quant à la participation aux divers volets ont été relevées. Conclusions: Le questionnaire FAME est un outil ciblé et pratique qui permet de mesurer le degré et le type de participation de la famille dans les soins des patients séjournant à l'USI. D'autres études doivent être menées pour évaluer l'outil FAME au sein d'une population élargie.

Patient and family engagement in patient care and research in Canadian intensive care units: a national survey.

PURPOSE: While patient and family engagement may improve clinical care and research, current practices for engagement in Canadian intensive care units (ICUs) are unknown. METHODS: We developed and administered a cross-sectional questionnaire to ICU leaders of current engagement practices, facilitators, and barriers to engagement, and whether engagement was a priority, using to an ordinal Likert scale from 1 to 10. RESULTS: The response rate was 53.4% (124/232). Respondents were from 11 provinces and territories, mainly from medical surgical ICUs (76%) and community hospitals (70%). Engagement in patient care included bedside care (84%) and bedside rounds (66%), presence during procedures/crises (65%), and survey completion (77%). Research engagement included ethics committees (36%), protocol review (31%), and knowledge translation (30%). Facilitators of engagement in patient care included family meetings (87%), open visitation policies (81%), and engagement as an institutional priority (74%). Support from departmental (43%) and hospital (33%) leadership was facilitator of research engagement. Time was the main barrier to engagement in any capacity. Engagement was a higher priority in patient care vs research (median [interquartile range], 8 [7-9] vs 3 [1-7]; P < 0.001) and in pediatric vs adult ICUs (10 [9-10] vs 8 [7-9]; P = 0.003). Research engagement was significantly higher in academic vs other ICUs (7 [5-8] vs 2 [1-4]; P < 0.001), and pediatric vs adult ICUs (7 [5-8] vs 3 [1-6]; P = 0.01). CONCLUSIONS: Organizational strategies and institutional support were key facilitators of engagement. Engagement in patient care was a higher priority than engagement in research.

RéSUMé: OBJECTIF: Bien que l'engagement des patients et des familles puisse améliorer les soins cliniques et la recherche, les pratiques actuelles en matière d'engagement dans les unités de soins intensifs (USI) canadiennes sont inconnues. MéTHODE: Nous avons élaboré et administré un questionnaire transversal à l'intention des dirigeants des USI portant sur les pratiques d'engagement actuelles, les facilitateurs et les obstacles à l'engagement, ainsi que la priorisation de l'engagement, en utilisant une échelle de Likert ordinale de 1 à 10. RéSULTATS: Le taux de réponse était de 53,4 % (124/232). Les répondants provenaient de 11 provinces et territoires, principalement d'USI médico-chirurgicales (76%) et d'hôpitaux communautaires (70%). L'engagement dans les soins aux patients comprenait les soins au chevet du patient (84%) et les tournées au chevet (66%), la présence pendant les interventions ou les crises (65%), et la complétion des questionnaires (77%). La participation à la recherche comprenait les comités d'éthique (36%), l'examen des protocoles (31%) et le transfert des connaissances (30%). Les facilitateurs à l'engagement dans les soins aux patients comprenaient les réunions familiales (87%), les politiques de visites ouvertes (81%) et l'engagement en tant que priorité institutionnelle (74%). Le soutien des directions de département (43%) et d'hôpital (33%) a été un facilitateur de l'engagement en recherche. Le temps était le principal obstacle à l'engagement à quelque titre que ce soit. L'engagement était une priorité plus élevée dans les soins aux patients qu'en recherche (médiane [écart interquartile], 8 [7­9] vs 3 [1­7]; P < 0,001) et dans les USI pédiatriques vs adultes (10 [9­10] vs 8 [7­9]; P = 0,003). L'engagement en matière de recherche était significativement plus élevé dans les USI universitaires vs autres (7 [5­8] vs 2 [1­4]; P < 0,001), et pédiatriques vs pour adultes (7 [5­8] vs 3 [1­6]; P = 0,01). CONCLUSION: Les stratégies organisationnelles et le soutien institutionnel ont été des facilitateurs clés de l'engagement. L'engagement dans les soins aux patients était une priorité plus élevée que l'engagement dans la recherche.