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BACKGROUND: Homelessness is associated with significant health disparities. Conventional health services often fail to address the unique needs and lived experience of homeless individuals and fail to include participatory design when planning health services. This scoping review aimed to examine areas of patient experience that are most frequently reported by people experiencing homelessness when seeking and receiving healthcare, and to identify existing surveys used to measure patient experience for this cohort. METHODS: A scoping review was undertaken reported according to the PRISMA-ScR 2020 Statement. Databases were searched on 1 December 2022: MEDLINE, EMBASE, APA PsychINFO and CINAHL. Included studies focused on people experiencing homelessness, healthcare services and patient experience, primary research, published in English from 2010. Qualitative papers and findings were extracted and synthesized against a modified framework based on the National Institute for Health and Care Excellence guidelines for care for people experiencing homelessness, the Institute of Medicine Framework and Lachman's multidimensional quality model. People with lived experience of homelessness were employed as part of the research team. RESULTS: Thirty-two studies were included. Of these, 22 were qualitative, seven quantitative and three mixed methods, from the United States of America (n = 17), United Kingdom (n = 5), Australia (n = 5) and Canada (n = 4). Health services ranged from primary healthcare to outpatient management, acute care, emergency care and hospital based healthcare. In qualitative papers, the domains of 'accessible and timely', 'person-centred', and values of 'dignity and respect' and 'kindness with compassion' were most prevalent. Among the three patient experience surveys identified, 'accessible and timely' and 'person-centred' were the most frequent domains. The least frequently highlighted domains and values were 'equitable' and 'holistic'. No questions addressed the 'safety' domain. CONCLUSIONS: The Primary Care Quality-Homeless questionnaire best reflected the priorities for healthcare provision that were highlighted in the qualitative studies of people experiencing homelessness. The most frequently cited domains and values that people experiencing homelessness expressed as important when seeking healthcare were reflected in each of the three survey tools to varying degrees. Findings suggest that the principles of 'Kindness and compassion' require further emphasis when seeking feedback on healthcare experiences and the domains of 'safety', 'equitable', and 'efficiency' are not adequately represented in existing patient experience surveys.
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Personas con Mala Vivienda , Personas con Mala Vivienda/psicología , Humanos , Satisfacción del Paciente , Aceptación de la Atención de Salud/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Accesibilidad a los Servicios de SaludRESUMEN
BACKGROUND: The published literature demands examples of health-care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. METHODS: This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health-care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)-centralized intake. The phenomenon of patient engagement using "patient and community engagement researchers" (PaCERs) in research and the process of redesigning centralized intake were selected as the case. In-depth evaluation of the case was undertaken through the triangulation of findings from the document review and participants' reflection on the case. RESULTS: In this case, patients and PaCERs participated in multiple activities including an initial meeting of key stakeholders to develop the project vision; a patient-to-patient PaCERs study to gather perspectives of patients with RA on the challenges they face in accessing and navigating the health-care system, and what they see as key elements of an effective system that would be responsive to their needs; the development of an evaluation framework for future centralized intake; and the choice of candidate centralized intake strategies to be evaluated. CONCLUSIONS: The described feasible multistep approach to active patient engagement in health-care system redesign contributes to an understanding of the application of this complex phenomenon in practice. Therefore, the manuscript serves as one more step towards a patient-centred health-care system that is redesigned with active patient engagement.
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Artritis Reumatoide/terapia , Participación del Paciente , Derivación y Consulta/organización & administración , Adulto , Colombia Británica , Femenino , Grupos Focales , Investigación sobre Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Estudios de Casos Organizacionales , Atención Primaria de Salud , Garantía de la Calidad de Atención de Salud , Reumatología , Participación de los InteresadosRESUMEN
BACKGROUND: To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake. METHODS: We used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey. RESULTS: Patient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients' perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items. CONCLUSION: The process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.
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Artritis/terapia , Investigación sobre Servicios de Salud , Participación del Paciente/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Calidad de la Atención de Salud/normas , Humanos , Proyectos de InvestigaciónRESUMEN
BACKGROUND: Surveys of patients suggest many want to be actively involved in treatment decisions for acute coronary syndromes. However, patient experiences of their engagement and participation in early phase decision-making have not been well described. METHODS: We performed a patient led qualitative study to explore patient experiences with decision-making processes when admitted to hospital with non-ST elevation acute coronary syndrome. Trained patient-researchers conducted the study via a three-phase approach using focus groups and semi-structured interviews and employing grounded theory methodology. RESULTS: Twenty patients discharged within one year of a non-ST elevation acute coronary syndrome participated in the study. Several common themes emerged. First, patients characterized the admission and early treatment of ACS as a rapidly unfolding process where they had little control. Participants felt they played a passive role in early phase decision-making. Furthermore, participants described feeling reduced capacity for decision-making owing to fear and mental stress from acute illness, and therefore most but not all participants were relieved that expert clinicians made decisions for them. Finally, once past the emergent phase of care, participants wanted to retake a more active role in their treatment and follow-up plans. CONCLUSIONS: Patients admitted with ACS often do not take an active role in initial clinical decisions, and are satisfied to allow the medical team to direct early phase care. These results provide important insight relevant to designing patient-centered interventions in ACS and other urgent care situations.
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Síndrome Coronario Agudo/terapia , Toma de Decisiones , Participación del Paciente , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación CualitativaRESUMEN
Therapy for polymyalgia rheumatica (PMR) varies widely in clinical practice as international recommendations for PMR treatment are not currently available. In this paper, we report the 2015 European League Against Rheumatism (EULAR)/American College of Rheumatology (ACR) recommendations for the management of PMR. We used the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology as a framework for the project. Accordingly, the direction and strength of the recommendations are based on the quality of evidence, the balance between desirable and undesirable effects, patients' and clinicians' values and preferences, and resource use. Eight overarching principles and nine specific recommendations were developed covering several aspects of PMR, including basic and follow-up investigations of patients under treatment, risk factor assessment, medical access for patients and specialist referral, treatment strategies such as initial glucocorticoid (GC) doses and subsequent tapering regimens, use of intramuscular GCs and disease modifying anti-rheumatic drugs (DMARDs), as well as the roles of non-steroidal anti-rheumatic drugs and non-pharmacological interventions. These recommendations will inform primary, secondary and tertiary care physicians about an international consensus on the management of PMR. These recommendations should serve to inform clinicians about best practices in the care of patients with PMR.
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Polimialgia Reumática/tratamiento farmacológico , Algoritmos , Antirreumáticos/uso terapéutico , Investigación Biomédica/métodos , Manejo de la Enfermedad , Esquema de Medicación , Medicina Basada en la Evidencia/métodos , Glucocorticoides/administración & dosificación , Glucocorticoides/uso terapéutico , Humanos , Cooperación Internacional , Fitoterapia/métodos , Polimialgia Reumática/diagnósticoRESUMEN
Background: Triage implementation in resource-limited emergency departments (EDs) has traditionally relied on intensive in-person training. This study sought to evaluate the impact of a novel digital-based learning strategy focused on the Interagency Integrated Triage Tool, a three-tier triage instrument recommended by the World Health Organization. Methods: A mixed methods study utilising pre-post intervention methods was conducted in two EDs in Papua New Guinea. The primary outcome was the mean change in knowledge before and after completion of a voluntary, multimodal training program, primarily delivered through a digital learning platform accessible via smartphone. Secondary outcomes included the change in confidence to perform selected clinical tasks, and acceptability of the learning methods. Findings: Among 136 eligible ED staff, 91 (66.9%) completed the digital learning program. The mean knowledge score on the post-training exam was 87.5% (SD 10.4), a mean increase of 12.9% (95% CI 10.7-15.1%, p < 0.0001) from the pre-training exam. There were statistically significant improvements in confidence for 13 of 15 clinical tasks, including undertaking a triage assessment and identifying an unwell patient.In an evaluation survey, 100% of 30 respondents agreed or strongly agreed the online learning platform was easy to access, use and navigate, and that the digital teaching methods were appropriate for their learning needs. In qualitative feedback, respondents reported that limited internet access and a lack of dedicated training time were barriers to participation. Interpretation: The use of digital learning to support triage implementation in resource-limited EDs is feasible and effective when accompanied by in-person mentoring. Adequate internet access is an essential pre-requisite. Funding: Development of the Kumul Helt Skul learning platform was undertaken as part of the Clinical Support Program (Phase II), facilitated by Johnstaff International Development on behalf of the Australian Government Department of Foreign Affairs and Trade through the PNG-Australia Partnership. RM is supported by a National Health and Medical Research Council Postgraduate Scholarship and a Monash Graduate Excellence Scholarship, while PC is supported by a Medical Research Future Fund Practitioner Fellowship. Funders had no role in study design, results analysis or manuscript preparation.
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Patient-centred care and patient engagement in healthcare and health research are widely mandated by funders, health systems and institutions. Increasingly, shared decision-making (SDM) is recognised as promoting patient-centred care. We explore this relationship by studying SDM in the context of integrating novel patient-centred policies in community rehabilitation. There is little research on SDM in rehabilitation, and less so in the critical community context. Patient co-investigators led study co-design. We aimed to describe how patients and providers experience SDM at community rehabilitation sites that adopted a novel, patient-centred Rehabilitation Model of Care (RMoC). Guided by focused ethnography, we conducted focus groups and interviews. Patient and professional participants were recruited from 10 RMoC early-adopter community rehabilitation sites. Sites varied in geography, patient population and provider disciplines. Patient and community engagement researchers used a set-collect-reflect method to document patient perspectives. Researchers captured provider perspectives using a semi-structured question guide. We completed 11 focus groups and 18 interviews (n = 45 providers, n = 17 patients). We found that most early-adopter providers spoke in a shared, patient-first language that focused on patient readiness, barriers and active listening. Congruent patient perceptions reflected inclusion in decision-making, goal setting and positive relationships. Many patients queried how care would become and remain accessible before and after community rehabilitation care respectively. Remaining connected while in the community was described as important to patients. Providers identified barriers like time, team dynamics and lack of clarity on the RMoC aims, which challenged the initiative's long-term sustainability. Policy innovations can promote SDM and communication through multiple strategies and training to facilitate candid, encouraging conversations. Sustainability of SDM gains is paramount. Most providers moved beyond tokenistic engagement, but competing responsibilities and team member resistance could thwart continuity. Further research is needed to empirically assess respectful and compassionate communication and SDM in community rehabilitation long term.
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Comunicación , Empatía , Canadá , Toma de Decisiones , Toma de Decisiones Conjunta , Humanos , Participación del PacienteRESUMEN
BACKGROUND: In a previous study, a prototype mobile health (mHealth) app was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA). OBJECTIVE: This study aims to evaluate the overall usability, quality, and effectiveness of the mHealth app prototype for aiding knee OA self-management from the perspectives of patients with OA and health care providers (HCPs). METHODS: Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth app prototype that was codeveloped with patients and HCPs. We recruited adult patients aged ≥20 years with early knee OA (n=18) who experienced knee pain on most days of the month at any time in the past and HCPs (n=7) to participate. In the qualitative assessment, patient and HCP perspectives were elicited on the likeability and usefulness of app features and functionalities and the perceived impact of the app on patient-HCP communication. The quantitative assessment involved evaluating the app using usability, quality, and effectiveness metrics. Patient baseline assessments included a semistructured interview and survey to gather demographics and assess the quality of life (European Quality-of-Life 5-Dimension 5-Level Questionnaire [EQ-5D-5L]) and patient activation (patient activation measure [PAM]). Following the 6-week usability trial period, a follow-up survey assessed patients' perceptions of app usability and quality and longitudinal changes in quality of life and patient activation. Semistructured interviews and surveys were also conducted with HCPs (n=7) at baseline to evaluate the usability and quality of the app prototype. RESULTS: Interviews with patients and HCPs revealed overall positive impressions of the app prototype features and functionalities related to likeability and usefulness. Between the baseline and follow-up patient assessments, the mean EQ-5D-5L scores improved from 0.77 to 0.67 (P=.04), and PAM scores increased from 80.4 to 87.9 (P=.01). Following the 6-week evaluation, patients reported a mean System Usability Scale (SUS) score of 57.8, indicating marginal acceptability according to SUS cutoffs. The mean number of goals set during the usability period was 2.47 (SD 3.08), and the mean number of activities completed for knee OA self-management during the study period was 22.2 (SD 17.8). Spearman rank correlation (rs) calculations revealed that the follow-up PAM scores were weakly correlated (rs=-0.32) with the number of goals achieved and the number (rs=0.19) of activities performed during the 6-week usability period. HCPs reported a mean SUS score of 39.1, indicating unacceptable usability. CONCLUSIONS: This evidence-based and patient-centered app prototype represents a potential use of mHealth for improving outcomes and enhancing conservative care by promoting patient activation and patient-HCP communication regarding OA management. However, future iterations of the app prototype are required to address the limitations related to usability and quality.
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Hemorragia/radioterapia , Anomalías Linfáticas/radioterapia , Síndrome de Noonan/radioterapia , Cuidados Paliativos , Enfermedades de la Piel/radioterapia , Abdomen , Adulto , Ingle , Hemorragia/etiología , Humanos , Anomalías Linfáticas/etiología , Masculino , Síndrome de Noonan/complicaciones , Perineo , Escroto , Enfermedades de la Piel/etiologíaRESUMEN
BACKGROUND: Homeless individuals suffer a greater burden of health problems than the general population. This study aimed to describe the epidemiology of physical trauma among homeless patients presenting to an urban major trauma center and to ascertain any differences in the nature, injury severity and outcomes among homeless compared to domiciled patients. METHODS: A retrospective matched cohort study that included adults who met inclusion criteria for The Alfred Hospital Trauma Registry between 01 July 2010 and 31 March 2017 was conducted. Primary homelessness was identified using the International Statistical Classification of Diseases, 10th Revision Coding Z59.0 and/or 'No fixed abode' address data. Homeless and domiciled patients were matched at a 1:2 ratio on age, sex, month and year of injury. The primary outcome variable was the Injury Severity Score (ISS). Secondary outcomes were hospital length of stay (LOS), mortality, emergency department (ED) disposition, hospital disposition, discharge processes and trauma registry recidivism. RESULTS: Of 25,920 cases in the trauma registry, 147 (0.6%) were identified as homeless, comprising 131 unique homeless individuals who were matched with 262 domiciled patients. The median (Inter-Quartile Range) ISS among homeless patients was 5(2-10), compared to 9(4-17) for domiciled patients (p < 0.001). Homeless patients had significantly lower odds of sustaining an injury with ISS>12 (OR 0.5, 95% CI: 0.3-0.8, p = 0.001). Homeless patients were treated more often than domiciled patients for assault (32.1% vs 9.5%), intentional self-harm (10.7% vs 2.7%), and penetrating injury (16.0% vs 6.5%). Homeless patients had higher rates of psychiatry admissions (9.2% vs 0.8%), positive blood alcohol concentration (30.5% vs 13.7%), and higher odds of discharging against medical advice (DAMA)(OR 2.0, 95% CI: 1.1-3.6 p = 0.02). There were no differences in LOS (p = 0.51), mortality (p = 0.19), ED disposition (p = 0.64) or trauma registry recidivism (p = 0.09). CONCLUSION: Among injured patients who presented at an urban trauma center, homelessness was associated with higher odds of assault, intentional self-harm, penetrating injury, psychiatry admissions, DAMA but lower ISS than domiciled patients. Variable definitions of homelessness and lack of standardized documentation in the medical record should be addressed to ensure these vulnerable patients are identified and linked with peripheral services.
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Personas con Mala Vivienda/estadística & datos numéricos , Alta del Paciente , Conducta Autodestructiva/epidemiología , Negativa del Paciente al Tratamiento , Heridas Penetrantes/epidemiología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Australia/epidemiología , Nivel de Alcohol en Sangre , Femenino , Personas con Mala Vivienda/psicología , Humanos , Puntaje de Gravedad del Traumatismo , Tiempo de Internación , Masculino , Trastornos Mentales/epidemiología , Persona de Mediana Edad , Mortalidad , Psiquiatría , Sistema de Registros , Estudios Retrospectivos , Centros Traumatológicos , Adulto JovenRESUMEN
Homeless individuals face many barriers to accessing healthcare, and EDs are often their primary entry point to the healthcare system. The COVID-19 pandemic has the potential to exacerbate existing social inequities and health disparities, including barriers to accessing social services and healthcare. Addressing the complex social and chronic health issues associated with homelessness can be challenging within the acute care environment. This perspective reflects upon the delivery of emergency healthcare to patients experiencing homelessness, and highlights strategies for optimising health outcomes during and beyond the pandemic.
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Infecciones por Coronavirus/epidemiología , Servicios Médicos de Urgencia , Personas con Mala Vivienda , Neumonía Viral/epidemiología , Adulto , Australia/epidemiología , COVID-19 , Infecciones por Coronavirus/terapia , Servicios Médicos de Urgencia/métodos , Servicios Médicos de Urgencia/organización & administración , Femenino , Disparidades en Atención de Salud , Humanos , Masculino , Pandemias , Neumonía Viral/terapiaRESUMEN
OBJECTIVE: To determine if COVID-19 State of Emergency (SOE) restrictions were associated with a reduction in presentations to two urban EDs in Melbourne, Victoria. METHODS: This retrospective observational study included adult patients presenting to The Alfred and Sandringham Hospital EDs during the first month of stage 2 and 3 SOE restrictions (26 March-25 April 2020). Patients transferred from other hospitals or diagnosed with COVID-19 were excluded. The primary outcome was the average number of presentations per day. Secondary outcomes included the average daily number of presentations for pre-specified subgroups defined by triage category and diagnosis. The independent impact of SOE restrictions, adjusted for underlying trends in attendance, was determined using negative binomial regression and reported as an incident rate ratio (IRR) with a 95% confidence interval (CI). RESULTS: Average daily attendance during the exposure period was 174.7. In the absence of SOE restrictions, 278.8 presentations per day were predicted, a reduction of 37.3% (IRR 0.63, 95% CI 0.59-0.67). Attendance was lower than anticipated for all triage categories (especially category 5 [IRR 0.51, 95% CI 0.44-0.59]) and diagnostic groups (including circulatory problems [IRR 0.62, 95% CI 0.50-0.76] and injury [IRR 0.58, 95% CI 0.53-0.63]). There were fewer than predicted presentations for several sentinel diagnoses, including gastroenteritis (IRR 0.27, 95% CI 0.17-0.42) and renal colic (IRR 0.55, 95% CI 0.33-0.92). CONCLUSIONS: SOE restrictions were associated with a significant reduction in ED presentations across a range of triage categories and diagnoses. Public health messaging should emphasise the importance of timely ED attendance for acute illness and injury.
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Infecciones por Coronavirus/epidemiología , Servicio de Urgencia en Hospital/estadística & datos numéricos , Control de Infecciones , Neumonía Viral/epidemiología , Anciano , COVID-19 , Infecciones por Coronavirus/prevención & control , Infecciones por Coronavirus/terapia , Femenino , Humanos , Control de Infecciones/estadística & datos numéricos , Masculino , Pandemias/prevención & control , Aceptación de la Atención de Salud/estadística & datos numéricos , Neumonía Viral/prevención & control , Neumonía Viral/terapia , Estudios Retrospectivos , Victoria/epidemiologíaRESUMEN
In emergency departments (EDs), demand for care often exceeds the available resources. Triage addresses this problem by sorting patients into categories of urgency. The Interagency Integrated Triage Tool (IITT) is a novel triage system designed for resource-limited emergency care (EC) settings. The system was piloted by two EDs in Papua New Guinea as part of an EC capacity development program. Implementation involved a five-hour teaching program for all ED staff, complemented by training resources including flowcharts and reference guides. Clinical redesign helped optimise flow and infrastructure, and development of simple electronic registries enabled data collection. Local champions were identified, and experienced EC clinicians from Australia acted as mentors during system roll-out. Evaluation data suggests the IITT, and the associated change management process, have high levels of acceptance amongst staff. Subject to validation, the IITT may be relevant to other resource-limited EC settings.
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OBJECTIVE: To describe a systems-level baseline evaluation of central intake (CI) and triage systems in arthritis care within Alberta, Canada. The specific objectives were to (1) describe a process for systems evaluation for the provision of arthritis care; (2) report the findings of the evaluation for different clinical sites that provide arthritis care; and (3) identify opportunities for improving appropriate and timely access based on the findings of the evaluation. METHODS: The study used a convergent mixed methods design. Surveys and semistructured interviews were the main data collection methods. Participants were recruited through 2 rheumatology clinics and 1 hip and knee clinic providing CI and triage, and included patients, referring physicians, specialists, and clinic staff who experienced CI processes. RESULTS: A total of 237 surveys were completed by patients (n = 169), referring physicians (n = 50), and specialists (n = 18). Interviews (n = 25) with care providers and patients provided insights to the survey data. Over 95% of referring physicians agreed that the current process of CI was satisfactory. Referring physicians and specialists reported issues with the referral process and perceived support in care for wait-listed patients. Patients reported positive experiences with access and navigation of arthritis care services but expressed concerns around communication and receiving minimal support for self-management of their arthritis before and after receiving specialist care. CONCLUSION: This baseline evaluation of CI and triage for arthritis care indicates satisfaction with the service, but areas that require further consideration are referral completion, timely waiting lists, and further supporting patients to self-manage their arthritis.
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Artritis , Listas de Espera , Alberta , Artritis/diagnóstico , Artritis/terapia , Humanos , Derivación y Consulta , Encuestas y CuestionariosRESUMEN
OBJECTIVES: To determine if Victorian State of Emergency (SOE) measures to combat COVID-19 were associated with delayed presentations or management of acute stroke and acute myocardial infarction (AMI). METHODS: This was a retrospective, pre- and post-implementation study using data from an adult, tertiary cardiology and neurosciences centre with 24-h capacity for endovascular procedures. All primary presentations with acute stroke or AMI during the first 28 days of stage 2 and stage 3 SOE restrictions (26 March to 23 April 2020) were compared to an equivalent period without restrictions (26 March to 23 April 2019). The primary outcome variable was time from onset of symptoms to ED presentation. RESULTS: There were 52 (1.6% of all ED presentations) patients who met inclusion criteria during the SOE period and 57 (1.0%) patients in the comparator period. Patients were equally matched for demographics, disease severity and prior history of stroke or AMI. Median time from symptom onset to presentation was 227 (93-1183) min during the SOE period and 342 (119-1220) min during the comparator period (P = 0.24). Among eligible patients with ischaemic stroke or ST-elevation AMI, median time to primary reperfusion intervention was 65 (37-78) min during SOE and 44 (39-60) min in the comparator period (P = 0.54). There were no differences in mortality at hospital discharge (9.6% vs 10.5%) and hospital length of stay (5.4 vs 4.3 days). CONCLUSIONS: In the first 28 days, SOE measures to combat COVID-19 were not associated with delays in presentation or life-saving interventions for patients with acute stroke and AMI.
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Infecciones por Coronavirus/prevención & control , Control de Infecciones , Infarto del Miocardio/epidemiología , Pandemias/prevención & control , Neumonía Viral/prevención & control , Accidente Cerebrovascular/epidemiología , Anciano , COVID-19 , Infecciones por Coronavirus/epidemiología , Servicio de Urgencia en Hospital/estadística & datos numéricos , Femenino , Mortalidad Hospitalaria , Humanos , Control de Infecciones/métodos , Tiempo de Internación/estadística & datos numéricos , Masculino , Infarto del Miocardio/mortalidad , Neumonía Viral/epidemiología , Estudios Retrospectivos , Accidente Cerebrovascular/mortalidad , Factores de Tiempo , Victoria/epidemiologíaRESUMEN
BACKGROUND: Despite a doubling of osteoarthritis-targeted mobile health (mHealth) apps and high user interest and demand for health apps, their impact on patients, patient outcomes, and providers has not met expectations. Most health and medical apps fail to retain users longer than 90 days, and their potential for facilitating disease management, data sharing, and patient-provider communication is untapped. An important, recurrent criticism of app technology development is low user integration design. User integration ensures user needs, desires, functional requirements, and app aesthetics are responsive and reflect target user preferences. OBJECTIVE: This study aims to describe the co-design process for developing a knee osteoarthritis minimum viable product (MVP) mHealth app with patients, family physicians, and researchers that facilitates guided, evidence-based self-management and patient-physician communication. METHODS: Our qualitative co-design approach involved focus groups, prioritization activities, and a pre-post quality and satisfaction Kano survey. Study participants included family physicians, patient researchers and patients with knee osteoarthritis (including previous participants of related collaborative research), researchers, key stakeholders, and industry partners. The study setting was an academic health center in Southern Alberta. RESULTS: Distinct differences exist between what patients, physicians, and researchers perceive are the most important, convenient, desirable, and actionable app functional requirements. Despite differences, study participants agreed that the MVP should be electronic, should track patient symptoms and activities, and include features customized for patient- and physician-identified factors and international guideline-based self-management strategies. Through the research process, participants negotiated consensus on their respective priority functional requirements. The highest priorities were a visual symptom graph, setting goals, exercise planning and daily tracking, and self-management strategies. The structured co-design with patients, physicians, and researchers established multiple collaborative processes, grounded in shared concepts, language, power, rationale, mutual learning, and respect for diversity and differing opinions. These shared team principles fostered an open and inclusive environment that allowed for effective conceptualization, negotiation, and group reflection, aided by the provision of tangible and ongoing support throughout the research process, which encouraged team members to question conventional thinking. Group-, subgroup-, and individual-level data helped the team reveal how and for whom perspectives about individual functional requirements changed or remained stable over the course of the study. This provided valuable insight into how and why consensus emerged, despite the presence of multiple and differing underlying rationales for functional requirement prioritization. CONCLUSIONS: It is feasible to preserve the diversity of perspectives while negotiating a consensus on the core functional requirements of an mHealth prototype app for knee osteoarthritis management. Our study sample was purposely constructed to facilitate high co-design interactivity. This study revealed important differences between the patient, physician, and researcher preferences for functional requirements of an mHealth app that did not preclude the development of consensus.
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Aplicaciones Móviles , Osteoartritis de la Rodilla , Telemedicina , Alberta , Femenino , Humanos , Masculino , Osteoartritis de la Rodilla/terapia , Participación del Paciente , MédicosRESUMEN
OBJECTIVE: To elicit perspectives of family physicians and patients with knee osteoarthritis (KOA) on KOA, its treatment/management and the use of a mobile health application (app) to help patients self-manage their KOA. DESIGN: A qualitative study using Cognitive Task Analysis for physician interviews and peer-to-peer semistructured interviews for patients according to the Patient and Community Engagement Research (PaCER) method. SETTING: Primary care practices and patient researchers at an academic centre in Southern Alberta. PARTICIPANTS: Intentional sampling of family physicians (n=4; 75% women) and patients with KOA who had taken part in previous PaCER studies and had experienced knee pain on most days of the month at any time in the past (n=5; 60% women). RESULTS: Physician and patient views about KOA were starkly contrasting. Patient participants expressed that KOA seriously impacted their lives and lifestyles, and they wanted their knee pain to be considered as important as other health problems. In contrast, physicians uniformly conceptualised KOA as a relatively minor health problem, although they still recognised it as a painful condition that often limits patients' activities. Consequently, physicians did not regard KOA as a condition to be proactively and aggressively managed. The gap between physicians' and patients' conceptualisation of KOA and its treatment extended to the use of an app for self-management. While patients were supportive of the app, physicians were sceptical of its use and focused more on accountability and patient resources. CONCLUSIONS: The clear discord between physicians' mental models and patients' lived experience and perceived needs around KOA emphasised a gap in understanding and communication about treatment and management of KOA. As such, this preliminary and formative research will inform a codesign approach to develop an app that will act as a communications tool between patients and physicians, enabling patient-physician discussions regarding modifiable self-management options based on a patient's perspectives and needs.
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Actitud del Personal de Salud , Actitud Frente a la Salud , Aplicaciones Móviles , Osteoartritis de la Rodilla/terapia , Médicos de Familia , Automanejo , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación CualitativaRESUMEN
BACKGROUND: The Multidimensional Pain Inventory (MPI) is a widely used tool in the evaluation of pain conditions. This questionnaire has been translated and validated in multiple languages. However, there is no validated French-language version available for clinicians and researchers interested in evaluating people living with pain. OBJECTIVES: The main objective of the present project was to make available a validated French-language evaluation tool for the cognitive, behavioural and emotional aspects of pain. METHODS: Following a reverse translation of the MPI, a French-language version of the questionnaire, the Inventaire multidimensionnel de la douleur, that was presented to 227 participants living with chronic pain, was obtained. These participants were all involved in a rehabilitation program in four different settings. A series of exploratory and confirmatory factor analyses was executed. RESULTS AND CONCLUSIONS: Although three items were removed from the original version of the MPI, the three sections of the Inventaire multidimensionnel de la douleur had good psychometric properties. The results concerning the questionnaire's structure were very similar to those obtained with the original tool and during its translation into other languages. People wishing to evaluate pain in French-speaking populations now have access to a French-language version of the MPI.