Canadian Patient Safety Institute

Venous thromboembolism (VTE) has been associated with reduced quality of life. However, few studies have explored patients’ accounts of its psychological impact. This patient-oriented qualitative study aimed to explore the experiences of individuals with VTE to better understand its psychological impact and identify strategies to support patient well-being. We conducted semi-structured interviews with 11 individuals diagnosed with VTE. Data were analyzed using reflexive thematic analysis. Most participants described significant emotional and psychological challenges, including anxiety about recurrence and uncertainty around the cause and management of their condition. The use of anticoagulants often required lifestyle changes, influenced by concerns about bleeding. While early care was generally described as reassuring, many participants felt unsupported after discharge. For some, the end of acute treatment marked the beginning of new emotional struggles. Participants emphasized the need for care that continues beyond the acute phase and includes mental health support. These findings highlight the need for patient-centered VTE care that addresses both physical and psychological needs throughout the care journey.

This ethnographic study explores how a research team navigated power dynamics while developing patient-oriented research practices in a high-secure forensic mental health care setting. Data were collected through team meetings, interviews, and field notes. The study explored how power was understood and addressed at individual, interpersonal, and structural levels. The three themes and six subthemes focused on the importance of acknowledging power within the system, power given to the project through community support, and power held by researchers. Researchers learned to navigate strict policies, procedures, and practices within the forensic environment, focusing on building trust with staff while ensuring patient autonomy and engagement. Equitable communication, particularly with patients, was critical in garnering support for patient-oriented research, often requiring the use of accessible language. Lastly, reflexivity allowed the research team to critically reflect on their biases and positionalities, fostering power-balanced relationships essential for authentic engagement. Findings suggest that addressing power imbalances early and often, and building on the support of staff champions, are key considerations for conducting patient-oriented research in forensic mental health settings.

IntroductionThe transition from paediatric to adult healthcare marks a pivotal period for chronically ill adolescents, as they transition from a highly supportive and family-oriented environment to an adult-oriented and a more individual-oriented healthcare system that places a greater emphasis on personal responsibility and independence. Parents, given their firsthand experience managing their child’s healthcare, play a central role in ensuring a smooth and successful transition, yet their perspectives on the barriers and facilitators of this complex process remain vastly underexplored. This scoping review aims to assess and provide comprehensive insights into parents’ perceptions of the successes and challenges during their adolescents’ transition from paediatric to adult healthcare.Methods and analysisThis scoping review is led by patient partners and will be guided by the Peters et al and the Joanna Briggs Institute guidelines for scoping reviews. The preliminary search strategy will be developed and calibrated in Ovid MEDLINE and will be subsequently replicated in the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsychInfo, Embase, Web of Science and Sociological s from inception through 18 December 2024, including all types of studies. Grey literature sources recommended by patient partners and clinical and qualitative research experts will also be included. Two reviewers will independently perform the title and abstract review of all studies against the predefined inclusion and exclusion criteria, followed by the full-text review of included studies. The reference list of all included studies will also be screened to maximise the retrieval of relevant sources. Data will be extracted and analysed quantitatively and qualitatively, with the study procedural and reporting format following Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines.Ethics and disseminationThis scoping review, through the broad and systematic mapping of existing literature, aims to provide a foundation for developing targeted support systems, strategies and interventions to address the unique needs and barriers faced by parents and caregivers of chronically ill adolescents during this critical transition to adult care.

The foot and ankle are frequently affected in rheumatic and musculoskeletal diseases (RMDs), yet there is a lack of high-quality evidence to determine the effectiveness of treatments. Outcomes in research are often inconsistently measured, impeding evidence synthesis. Additionally, clinical decisions are based on research outcomes, but these are not always regarded as important by people with RMDs. This study aimed to determine domains of importance to people with RMDs who have experienced foot and ankle disorders, and aid in developing a standardised core outcome set (COS) to address these issues. Participants from four continents (Europe, Africa, Australia, North America) were recruited to semi-structured interviews through clinical departments and electronic mailing lists. Analysis was conducted using a mixed deductive/inductive approach to the framework method. Patient research partners co-produced the interview schedule and recruitment materials, and co-interpreted results. Fifty-six participants (age range 27 to 76 years; 66 % female), with foot and ankle disorders in a variety of RMDs (including inflammatory arthritis, osteoarthritis, crystal arthropathies, connective tissue diseases), were interviewed. Sixteen domains were described by participants: pain, physical function, fatigue, deformity, skin and nail health, swelling, temperature, numbness, poor circulation, cramping, activities/participation, footwear impact, psychological impact, sleep, healthcare utilisation and personal expenses. Most domains were considered important to participants regardless of RMD or geographic location. Foot and ankle disorders have far-reaching consequences for people with RMDs. This large qualitative study provides a foundation for achieving international consensus on a core outcome set for foot and ankle disorders in RMDs, to improve the quality of evidence demonstrating effectiveness of treatments.

The 2023 Cure Ocular Melanoma (CURE OM) Global Science Meeting was held in Philadelphia on November 6, 2023. There is increased awareness and dedicated research in uveal melanoma (UM), but unmet needs remain in the prevention, detection, and treatment of UM. The purpose of this meeting was to provide an international forum for the exchange of research ideas, to allow for discussion of basic science as well as clinical research on UM, and to gather input about advocacy and patient needs.

BackgroundPrevious research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and experiences, with a focus on general and health-related quality of life, sleepiness, and patient satisfaction.MethodsWe conducted a secondary analysis of a randomized trial in which participants with severe SDB were assigned to either ACP-led or physician-led management. We created longitudinal linear mixed models to assess the impacts of treatment arm and timepoint on total and domain-level scores of multiple patient-reported outcome measures and patient-reported experience measures.ResultsPatients in both treatment arms (ACP-led n = 81; sleep-physician = 75) reported improved outcomes on the Sleep Apnea Quality of Life Index, Health Utilities Index, and Epworth Sleepiness Scale. Patients in each group had similar and clinically meaningful improvements on domains assessing cognition, emotion, and social functioning. The linear mixed models suggested no significant difference between treatment arms on the patient-reported outcomes. However, scores significantly improved over time.ConclusionsManagement of SDB using ACPs was comparable to physician-led care, as measured bypatient-reported outcome and experience measures. While loss to follow-up limits our findings, these results provide some support for the use of this novel health service delivery model to improve access to high quality SDB care.Clinical trial registrationThis is analysis of data from the study registered Clinicaltrials.gov (NCT02191085).

Sepsis is a global health threat with significant morbidity and mortality. Despite clinical practice guidelines and developed health systems, sepsis is often unrecognized or misdiagnosed, leading to preventable harm. In Canada, sepsis is responsible for 1 in 20 deaths and is a significant driver of health system costs. Despite being a signatory to the World Health Organization's Resolution WHA 70.7, adopted in 2017, Canada has not lived up to its commitment. Many existing sepsis policies were developed in response to a specific tragedy, and there is no national sepsis action plan. In this article, we describe the burden of sepsis, provide examples of existing, context-specific, reactionary sepsis policies, and urge a coordinated, proactive Canadian sepsis action plan to reduce the burden of sepsis.

Objectif Actualiser le guide de pratique clinique de 2015 et présenter une approche simplifiée de la prise en charge des lipides dans la prévention des maladies cardiovasculaires (MCV) en première ligne. Méthodes Conformément aux recommandations de l'Institute of Medicine dans Clinical Practice Guidelines We Can Trust, un panel pancanadien d'experts multidisciplinaires en lignes directrices a été formé. Ce panel était représentatif des cliniciens en soins primaires, libre de tout conflit d'intérêts avec l'industrie, et il tenait compte des points de vue des patients. Une équipe distincte, responsable des données probantes scientifiques, a passé en revue l'information sur les statines, l'ézétimibe, les inhibiteurs de la proprotéine convertase subtilisine-kexine de type 9, les fibrates, les chélateurs des acides biliaires, la niacine et les suppléments d'omega-3 (acide docosahexaénoïque avec acide eicosapentaénoïque [EPA] ou ester éthylique de l'EPA seul [icosapent]), ainsi que sur la réponse à 11 questions supplémentaires. Le panel des lignes directrices a finalisé les recommandations en utilisant la méthodologie GRADE (Grading of Recommendations Assessment, Development and Evaluation). Recommandations Toutes les recommandations sont présentées de manière à être centrées sur le patient et conçues en ayant à l'esprit les besoins des médecins de famille et des autres cliniciens des soins primaires. De nombreuses recommandations sont semblables à celles publiées en 2015. Les statines demeurent le traitement de première intention pour la prévention tant primaire que secondaire des MCV, et le régime méditerranéen et l'activité physique sont recommandés pour réduire le risque cardiovasculaire (en prévention primaire et secondaire). Le panel des lignes directrices a recommandé de ne pas utiliser le dosage des lipoprotéines a, des apolipoprotéines B ou le score calcique coronarien (SCC) dans l'évaluation du risque cardiovasculaire, et de ne pas cibler de seuils précis de taux lipidiques. L'équipe a aussi passé en revue de nouvelles données concernant les acides gras omega-3 (y compris l'ester éthylique d'EAP [icosapent]) et les inhibiteurs de la proprotéine convertase subtilisine-kexine de type 9, et a précisé les moments où il convient de procéder à une prise de décision partagée avec les patients sur les interventions pour diminuer le risque cardiovasculaire. Ces lignes directrices actualisées et fondées sur des données probantes présentent une approche simplifiée de la prise en charge des lipides pour la prévention et le traitement des MCV. Ce guide de pratique clinique a été conçu par et pour des professionnels de la santé en soins primaires et leurs patients.  Ces lignes directrices présentent une actualisation des lignes directrices simplifiées du groupe PEER sur les lipides de 2015. Visant à répondre aux besoins des médecins de soins primaires et de leurs équipes, elles ont été conçues de manière à être applicables et réalisables.  Comme dans les recommandations de 2015, l'atteinte de seuils lipidiques n'est pas recommandée. Les statines demeurent le traitement de première intention pour la prévention primaire des maladies cardiovasculaires en se fondant sur le risque cardiovasculaire estimé du patient et sur la prise de décision partagée. À l'heure actuelle, les lipoprotéines a, les apolipoprotéines B ou le score calcique coronarien ne jouent pas de rôle dans l'évaluation du risque.  Les traitements autres que les statines, comme l'ézétimibe et les inhibiteurs de la proprotéine convertase subtilisine-kexine de type 9, peuvent être ajoutées aux statines en prévention secondaire, lorsqu'une réduction additionnelle du risque cardiovasculaire est nécessaire.  Il y aurait lieu de faire un nouvel essai des statines avec les patients dont l'intolérance n'est pas sévère.  Un résumé du guide de pratique clinique de 2 pages, une brochure à l'intention des patients et une aide à la décision actualisée en ligne ont été produits pour aider à la prise de décision partagée entre les patients et les cliniciens.