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OBJECTIVES: To evaluate the acceptability, reliability (inter- and intrarater), and validity (convergent, known groups, and predictive) of virtually administered gait speed tests for community-dwelling older adults. DESIGN: A prospective cohort study was performed, tracking health outcomes for a year. SETTING AND PARTICIPANTS: The 3-m gait speed test at usual and fast pace was administered to community-dwelling older adults over Zoom. METHOD: To examine acceptability, participants completed questionnaires regarding telehealth usability and experience. Virtual gait speed tests were administered at baseline and 24 to 72 hours later to evaluate reliability. Self-report mobility measures were used to examine convergent and known-groups validity. Participants' health outcomes were tracked for a year to evaluate predictive validity. RESULTS: Sixty participants completed the baseline assessment and 52 completed the second assessment. Participants reported an overall positive experience with the test. Intraclass correlation coefficients for reliability ranged from 0.79 to 0.90. For convergent validity, correlations >0.30 were found predominantly for usual gait speed with self-report mobility measures. Both the usual- and fast-gait speed were able to discriminate between difficulty walking and gait aid use. Usual gait speed was able to predict specialist and family doctor visits and fast gait speed was able to predict rehabilitation specialist visits over 1 year. CONCLUSIONS AND IMPLICATIONS: Our findings demonstrate support for the acceptability, reliability, and validity of virtually administered gait speed tests for community-dwelling older adults. Although future studies are needed to examine the validity of virtual gait speed tests in larger and more diverse samples to improve generalizability of results, clinicians and researchers can virtually administer 3-m gait speed tests with confidence that scores are trustworthy and reflect older adults' mobility.
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Velocidade de Caminhada , Humanos , Masculino , Feminino , Idoso , Estudos Prospectivos , Reprodutibilidade dos Testes , Velocidade de Caminhada/fisiologia , Idoso de 80 Anos ou mais , Avaliação Geriátrica/métodos , Inquéritos e Questionários/normas , Telemedicina , Vida IndependenteRESUMO
PURPOSE: Given that risk reduction and healthy lifestyles can prevent 4 in 10 cancers, it is important to understand what survivors believe caused their cancer to inform educational initiatives. METHODS: In this secondary analysis, we analyzed cancer survivor responses on the Causes Subscale of the Revised Illness Perception Questionnaire, which lists 18 possible causes of illness and a free text question. We used descriptive statistics to determine cancer survivors' agreement with the listed causes and conducted separate partial proportional odds models for the top three causes to examine their associations with sociodemographic and clinical characteristics. Content analysis was used to examine free text responses. RESULTS: Of the 1,001 participants, most identified as Caucasian (n = 764, 77%), female (n = 845, 85%), and were diagnosed with breast cancer (n = 656, 66%). The most commonly believed causes of cancer were: stress or worry (n = 498, 51%), pollution in the environment (n = 471, 48%), and chance or bad luck (n = 412, 42%). The associations of sociodemographic and clinical variables varied across the models. Free text responses indicated that hereditary and genetic causes (n = 223, 22.3%) followed by trauma and stress (n = 218, 21.8%) and bad luck or chance (n = 79, 7.9%) were the most important causes of cancer. CONCLUSIONS: Study results illuminate cancer survivors' beliefs about varying causes of their cancer diagnosis and identify characteristics of survivors who are more likely to believe certain factors caused their cancer. Results can be used to plan cancer education and risk-reduction campaigns and highlight for whom such initiatives would be most suitable.
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Sobreviventes de Câncer , Neoplasias , Humanos , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Estudos Transversais , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/epidemiologia , Inquéritos e Questionários , Adulto , IdosoRESUMO
BACKGROUND: There is growing recognition of the importance of sex and gender differences within falls literature, but the characterization of such literature is uncertain. The aim of this scoping review was to (1) map the nature and extent of falls literature examining sex or gender differences among older adults, and (2) identify gaps and opportunities for further research and practice. METHODS: We used a scoping review methodology. Eligible studies included participants with a mean age of ≥ 60 years and study aims specifying falls and either sex or gender concepts. MEDLINE, Embase, CINAHL, Ageline, and Psychinfo databases were searched from inception to March 2, 2022. Records were screened and charted by six independent reviewers. Descriptive and narrative reports were generated. RESULTS: A total of 15,266 records were screened and 74 studies were included. Most studies reported on sex and gender differences in fall risk factors (n = 52, 70%), incidence/prevalence (n = 26, 35%), fall consequences (n = 22, 30%), and fall characteristics (n = 15, 20%). The majority of studies (n = 70, 95%) found significant sex or gender differences in relation to falls, with 39 (53%) identifying significant sex differences and 31 (42%) identifying significant gender differences. However, only three (4%) studies defined sex or gender concepts and only nine (12%) studies used sex or gender terms appropriately. Fifty-six (76%) studies had more female participants than males. Four (5%) were intervention studies. Studies did not report falls in line with guidelines nor use common fall definitions. CONCLUSION: Sex and gender differences are commonly reported in falls literature. It is critical for future research to use sex and gender terms appropriately and include similar sample sizes across all genders and sexes. In addition, there is a need to examine more gender-diverse populations and to develop interventions to prevent falls that address sex and gender differences among older adults.
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Narração , Humanos , Masculino , Feminino , Idoso , Fatores Sexuais , Fatores de Risco , Estações do AnoRESUMO
INTRODUCTION: Physical activity (PA) is critical for disease prevention and maintaining functional ability with aging. Despite this, as many as 50% of older adults in populations worldwide are considered insufficiently active. There is a recognized need to mobilize policies targeted toward modifiable determinants of healthy aging like PA. This umbrella review aimed to summarize the evidence for determinants of PA in community-dwelling older adults. METHODS: A research librarian searched six databases. Systematic and scoping reviews were included if they investigated community-dwelling people with a mean age of 60 + years and examined a relationship between a determinant and any type of PA. Two independent reviewers screened and extracted data from all reviews. JBI methodology and Critical Appraisal Checklist for Systematic Reviews and Research Syntheses were followed and information on the quality of the evidence was extracted. RESULTS: From 17,277 records screened,11 reviews representing > 300 unique primary papers were ultimately included. Only 6% of studies included in all reviews had longitudinal designs. Included studies used a large variety of PA measures, with 76% using only self-report, 15% using only direct measures (e.g., accelerometry), 3% using both types, and 6% with no outcome measure reported. Only four reviews provided a definition of PA and there was substantial inconsistency in the way PA was categorised. Community level influences, which only included the physical environment, were the most commonly assessed (6/11) with more than 70% of the summarized relationships demonstrating null associations. Three out of four reviews reported a positive relationship between walkability and PA in general community-dwelling older adults. There was also evidence supporting relationships between presence of social support for PA, younger age, and men having higher PA from a single systematic review. None of the included reviews assessed the quality of evidence but over 60% performed a risk of bias assessment. CONCLUSIONS: Walkability, age, gender, and social support for PA were the most supported PA determinants identified. Further research should focus on interpersonal and intrapersonal influences and incorporate direct measures of PA with clear operational definitions. There is a need for longitudinal study designs to further understand determinants of PA behaviour trajectories.
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Envelhecimento , Vida Independente , Masculino , Humanos , Idoso , Pessoa de Meia-Idade , Revisões Sistemáticas como Assunto , Exercício Físico , AutorrelatoRESUMO
OBJECTIVE: To describe and identify factors influencing mobility among older adults during the first 5 months of the COVID-19 pandemic. DESIGN: A cross-sectional telesurvey. SETTING: Community dwelling older adults, situated within the first 5 months of the COVID-19 pandemic, in Hamilton, Canada. PARTICIPANTS: A random sample of 2343 older adults were approached to be in the study, of which 247 completed the survey (N=247). Eligible participants were aged ≥65 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Mobility was measured using global rating of change items and the Late Life Function Instrument (LLFI). Multivariate linear regression models were used to examine the association between mobility and related factors based on Webber's model. RESULTS: 247 older adults (29% male, mean age 78±7.3 years) completed surveys between May and August 2020. Respectively, 26%, 10%, and 9%, rated their ability to engage in physical activity, housework, and move around their home as worse compared with the start of the pandemic. The mean LLFI score was 60.9±13.4. In the model, walking volume (ß=0.03 95% confidence interval 0.013, 0.047), fall history (ß=-0.04, 95% confidence interval -0.08, -0.04), male sex (ß=0.06, 95% confidence interval 0.02, 0.09), unpleasant neighborhood (ß=-0.06, 95% confidence interval -0.11, -0.02), musculoskeletal pain (ß=-0.07, 95% confidence interval -0.11, -0.03), and self-reported health (ß=0.08, 95% confidence interval 0.03, 0.13) had the strongest associations with LLFI scores and explained 64% of the variance in the LLFI score. CONCLUSIONS: Physical and environmental factors may help explain poorer mobility during lockdowns. Future research should examine these associations longitudinally to see if factors remain consistent over time and could be targeted for rehabilitation.
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COVID-19 , Vida Independente , Humanos , Masculino , Idoso , Idoso de 80 Anos ou mais , Feminino , Pandemias , Estudos Transversais , COVID-19/epidemiologia , Controle de Doenças Transmissíveis , Limitação da MobilidadeRESUMO
Background: The COVID-19 pandemic has disrupted everyday rehabilitation research. Many academic institutions have halted in-person human research including rehabilitation sciences. Researchers are faced with several barriers to continuing their research programs. The purpose of this perspective article is to report the results of an interdisciplinary workshop aimed at understanding the challenges and corresponding strategies for conducting rehabilitation research during the COVID-19 pandemic. Methods: Twenty-five rehabilitation researchers (17 trainees and eight faculty) attended a 2-h facilitated online workshop in to discuss challenges and strategies they had experienced and employed to conduct rehabilitation research during the COVID-19 pandemic. Results: Rehabilitation researchers reported challenges with (1) pandemic protocol adjustments, (2) participant accessibility, and (3) knowledge dissemination, along with corresponding strategies to these challenges. Researchers experienced disruptions in study outcomes and intervention protocols to adhere to public health guidelines and have suggested implementing novel virtual approaches and study toolkits to facilitate offsite assessment. Participant accessibility could be improved by engaging community stakeholders in protocol revisions to ensure equity, safety, and feasibility. Researchers also experienced barriers to virtual conferences and publication, suggested opportunities for smaller networking events, and revisiting timeframes for knowledge dissemination. Conclusion: This perspective article served as a catalyst for discussion among rehabilitation researchers to identify novel and creative approaches that address the complexities of conducting rehabilitation research during the COVID-19 pandemic and beyond.
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Background: Residents frequently lead goals of care (GoC) conversations with patients and families to explore patient values and preferences and to establish patient-centered care plans. However, previous work has shown that the hidden curriculum may promote physician-driven agendas and poor communication in these discussions. We previously developed an online learning (e-learning) module that teaches a patient-centered approach to GoC conversations. We sought to explore residents' experiences and how the module might counteract the impact of the hidden curriculum on residents' perceptions and approaches to GoC conversations. Methods: Eleven first-year internal medicine residents from the University of Toronto underwent semi-structured interviews before and after completing the module. Themes were identified using principles of constructivist grounded theory. Results: Prior to module completion, residents described institutional and hierarchical pressures to "get the DNR" (Do-Not-Resuscitate), leading to physician-centered GoC conversations focused on code status, documentation, and efficiency. Tensions between formal and hidden curricula led to emotional dissonance and distress. However, after module completion, residents described new patient-centered conceptualizations and approaches to GoC conversations, feeling empowered to challenge physician-driven agendas. This shift was driven by greater alignment of the new approach with their internalized ethical values, greater tolerance of uncertainty and complexity in GoC decisions, and improved clinical encounters in practice. Conclusion: An e-learning module focused on teaching an evidence-based, patient-centered approach to GoC conversations appeared to promote a shift in residents' perspectives and approaches that may indirectly mitigate the influence of the hidden curriculum, with the potential to improve quality of communication and care.
Contexte: Les résidents sont souvent amenés à discuter des objectifs de soins (ODS) avec les patients et leurs familles afin d'explorer les valeurs et les préférences des patients et d'élaborer des plans de traitement centrés sur le patient. Cependant, certaines études montrent que le curriculum caché peut favoriser la mauvaise communication et l'orientation de la discussion selon les priorités du médecin. Nous avions déjà conçu un module d'apprentissage en ligne visant à enseigner une approche centrée sur le patient lors des discussions sur les ODS. Ici, nous explorons l'expérience des résidents et la façon dont ce module pourrait contrecarrer l'impact du curriculum caché sur leurs perceptions et leurs approches dans le cadre de ces discussions. Méthodes: Onze résidents de première année en médecine interne de l'Université de Toronto ont participé à des entretiens semi-structurés avant et après avoir suivi le module. Les thèmes ont été définis en appliquant les principes de la théorie ancrée constructiviste. Résultats: Avant de suivre le module, les résidents ont évoqué les pressions institutionnelles et hiérarchiques qu'ils subissent pour obtenir une décision de la part du patient quant à la non-réanimation, les obligeant à diriger la discussion sur les ODS et à l'axer sur la définition du statut de code, la documentation et l'efficacité. Les contradictions entre le programme officiel et le curriculum caché entraînaient chez eux une dissonance et une détresse émotionnelles. En revanche, après avoir terminé la formation, les résidents ont décrit de nouvelles conceptualisations et approches de la discussion sur les ODS, plutôt centrées sur le patient, grâce auxquelles ils se sentent habilités à contester le dictat du médecin quant aux sujets à aborder dans la discussion. Ce changement s'explique par un meilleur alignement de la nouvelle approche sur les valeurs éthiques qu'ils ont intériorisées, une plus grande tolérance à l'incertitude et à la complexité des décisions concernant les ODS et une amélioration des rencontres cliniques dans la pratique. Conclusion: Un module d'apprentissage en ligne axé sur l'enseignement d'une approche fondée sur les données probantes et centrée sur le patient pour les discussions sur les ODS semble favoriser un changement de perspective et d'approche chez les résidents, qui aurait pour effet d'atténuer indirectement l'influence du curriculum caché et d'améliorer la qualité de la communication et des soins.
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As of 2018, 14.4 million adults ages 18 and older in the U.S had alcohol use disorder (AUD). However, only about 8% of adults who had AUD in the past year received treatment. Surveys have also shown racial disparities regarding AUD treatments. Thus, it is imperative to identify racial disparities in AUD patients, as it may indicate a specific underlying pathophysiology in an AUD subpopulation. To identify racial disparity in AUD, we enrolled 64 cohorts, including 26 AUD participants and 38 healthy controls, from Northwest Louisiana using community-based enrollment. Then, we used psychometric scales to assess alcohol drinking patterns and measured blood metabolites change using LC-MS/MS. Alcohol-related scales from the questionnaires did not differ between the Caucasian AUD participants and African-American AUD participants. From blood metabolomics analyses, we identified that 6 amino acids were significantly different by AUD status and or race. Interestingly, Caucasian AUD participants had a higher glutamate metabolism mediated by glutamine synthetase (GS). The correlation between blood glutamate/glutamine ratio and GS activity was only significant in the Caucasian AUD group whereas no changes were observed in African-American AUD group or controls. Taken together, our findings from this sample population demonstrate that blood GS is a potential biomarker associated with Caucasian AUD, which is an important step towards the application of a new pharmacological treatment for AUD.
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Alcoolismo , Glutamato-Amônia Ligase , Adolescente , Adulto , Consumo de Bebidas Alcoólicas , Alcoolismo/metabolismo , Cromatografia Líquida , Humanos , Espectrometria de Massas em TandemRESUMO
OBJECTIVE: Gynecological cancer (GC) survivors have unmet needs when they complete primary cancer treatment. Despite this, no known research has summarized these needs and survivors' suggestions to address them. We conducted a scoping review to fill these gaps and develop a model useful to guide clinical discussions and/or interventions. METHODS: English, full length, and accessible primary studies describing the needs of GC survivors were included. No restrictions on date nor country of publication were applied. Two reviewers screened and extracted data, which was verified by a third reviewer. RESULTS: Seventy-one studies met the inclusion criteria for data extraction. Results were thematically grouped into seven dimensions: physical needs, sexuality-related concerns, altered self-image, psychological wellbeing, social support needs, supporting the return to work, and healthcare challenges and preferences. After consulting with a stakeholder group (a GC survivor, clinicians, and researchers), the dimensions were summarized into a proposed model to guide clinical assessments and/or interventions. CONCLUSION: Results illuminate the diverse needs of GC survivors as they complete primary cancer treatment and their recommendations for care to meet these needs. PRACTICE IMPLICATIONS: The resulting model can be used to guide assessments, discussions and/or interventions to optimally prepare GC survivors for transition out of primary cancer treatment.
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Sobreviventes de Câncer , Neoplasias , Sobreviventes de Câncer/psicologia , Atenção à Saúde , Humanos , Comportamento Sexual , Apoio Social , Sobreviventes/psicologiaRESUMO
We implemented "My Life, My Story" as an educational activity for enhancing patient-centered care (PCC) competencies across health professions trainees. Four hundred and eighty-two stories were completed for patients (M age = 72.5, SD = 12.7) primarily in inpatient medical settings, by trainees from seven disciplines. Trainees spent approximately 2 hours on the assignment; 84% felt this was a good use of their time. A mixed method survey evaluated the effectiveness of the activity on enhancing PCC competencies using open ended questions and ratings on the Consultation and Relational Empathy (CARE) Measure adapted for this project. The assignment most influenced trainees' ability to understand the patient as a "whole person" along with other PCC competencies such as showing empathy, really listening, building knowledge of values and goals, and building relationships. In addition, trainees perceived the activity enhanced patient care and was a positive contrast to usual care.
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Geriatria , Idoso , Empatia , Geriatria/educação , Humanos , Assistência Centrada no PacienteRESUMO
BACKGROUND: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. AIM: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. DESIGN: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3-4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. SETTING AND PARTICIPANTS: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients (n = 25) and their caregivers (n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. RESULTS: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. CONCLUSIONS: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Adulto , Assistência ao Convalescente , Hospitais , Humanos , Alta do PacienteRESUMO
(1) Background: One in two Canadians will be diagnosed with cancer in their lifetime, but as a result of the progress in diagnosis and treatment, more individuals are surviving cancer than ever before. However, the impact of cancer does not end with treatment. The objectives of this review are to (1) provide a broad overview of the supportive care interventions and models of care that have been researched to support Canadian post-treatment cancer survivors; and (2) analyze how these supportive care interventions and/or care models align with the practice recommendations put forth by Cancer Care Ontario (CCO) and the Canadian Association of Psychosocial Oncology/Canadian Partnership Against Cancer (CAPO/CPAC). (2) Methods: An electronic search was completed in MEDLINE, Embase, PsycINFO, and CINAHL in January 2021. Included studies described supportive care interventions or models of care utilized by adult Canadian cancer survivors. (3) Results: Forty-two articles were included. Survivors utilized a multitude of supportive care interventions, with peer support and physical activity programs being most frequently cited. Four models of follow-up care were identified: primary care, oncology care, shared-care, and transition clinics. The supportive care interventions and models of care variably aligned with the recommendations set by CCO and CAPO/CPAC. The most commonly followed recommendation was the promotion of self-management and quality resources for patients. (4) Conclusions: Results indicate an inconsistency in access to supportive care interventions and the delivery of survivorship care for cancer survivors across Canada. Current efforts are being made to implement the recommendations by CCO and CAPO/CPAC; however, provision of these guidelines remains varied.
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Sobreviventes de Câncer , Neoplasias , Adulto , Humanos , Oncologia , Neoplasias/terapia , Ontário , SobreviventesRESUMO
OBJECTIVE: Identification of patients with shortened life expectancy is a major obstacle to delivering palliative/end-of-life care. We previously developed the modified Hospitalised-patient One-year Mortality Risk (mHOMR) model for the automated identification of patients with an elevated 1-year mortality risk. Our goal was to investigate whether patients identified by mHOMR at high risk for mortality in the next year also have unmet palliative needs. METHOD: We conducted a prospective observational study at two quaternary healthcare facilities in Toronto, Canada, with patients admitted to general internal medicine service and identified by mHOMR to have an expected 1-year mortality risk of 10% or more. We measured patients' unmet palliative needs-a severe uncontrolled symptom on the Edmonton Symptom Assessment Scale or readiness to engage in advance care planning (ACP) based on Sudore's ACP Engagement Survey. RESULTS: Of 518 patients identified by mHOMR, 403 (78%) patients consented to participate; 87% of those had either a severe uncontrolled symptom or readiness to engage in ACP, and 44% had both. Patients represented frailty (38%), cancer (28%) and organ failure (28%) trajectories were admitted for a median of 6 days, and 94% survived to discharge. CONCLUSIONS: A large majority of hospitalised patients identified by mHOMR have unmet palliative needs, regardless of disease, and are identified early enough in their disease course that they may benefit from a palliative approach to their care. Adoption of such a model could improve the timely introduction of a palliative approach for patients, especially those with non-cancer illness.
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BACKGROUND: Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients' receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. METHODS: Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. RESULTS: There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). CONCLUSIONS: Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.
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Cuidados Paliativos , Assistência Terminal , Adolescente , Adulto , Idoso , Canadá/epidemiologia , Feminino , Hospitalização , Humanos , Tempo de Internação , Masculino , Estudos RetrospectivosRESUMO
BACKGROUND: Communication within the circle of care is central to coordinated, safe, and effective care; yet patients, caregivers, and health care providers often experience poor communication and fragmented care. Through a sequential program of research, the Loop Research Collaborative developed a web-based, asynchronous clinical communication system for team-based care. Loop assembles the circle of care centered on a patient, in private networking spaces called Patient Loops. The patient, their caregiver, or both are part of the Patient Loop. The communication is threaded, it can be filtered and sorted in multiple ways, it is securely stored, and can be exported for upload to a medical record. OBJECTIVE: The objective of this study was to implement and evaluate Loop. The study reporting adheres to the Standards for Reporting Implementation Research. METHODS: The study was a hybrid type II mixed methods design to simultaneously evaluate Loop's clinical and implementation effectiveness, and implementation barriers and facilitators in 6 health care sites. Data included monthly user check-in interviews and bimonthly surveys to capture patient or caregiver experience of continuity of care, in-depth interviews to explore barriers and facilitators based on the Consolidated Framework for Implementation Research (CFIR), and Loop usage extracted directly from the Loop system. RESULTS: We recruited 25 initiating health care providers across 6 sites who then identified patients or caregivers for recruitment. Of 147 patient or caregiver participants who were assessed and met screening criteria, 57 consented and 52 were enrolled on Loop, creating 52 Patient Loops. Across all Patient Loops, 96 additional health care providers consented to join the Loop teams. Loop usage was followed for up to 8 months. The median number of messages exchanged per team was 1 (range 0-28). The monthly check-in and CFIR interviews showed that although participants acknowledged that Loop could potentially fill a gap, existing modes of communication, workflows, incentives, and the lack of integration with the hospital electronic medical records and patient portals were barriers to its adoption. While participants acknowledged Loop's potential value for engaging the patient and caregiver, and for improving communication within the patient's circle of care, Loop's relative advantage was not realized during the study and there was insufficient tension for change. Missing data limited the analysis of continuity of care. CONCLUSIONS: Fundamental structural and implementation challenges persist toward realizing Loop's potential as a shared system of asynchronous communication. Barriers include health information system integration; system, organizational, and individual tension for change; and a fee structure for health care provider compensation for asynchronous communication.
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Comunicação , Portais do Paciente , Adulto , Cuidadores , Criança , Registros Eletrônicos de Saúde , Pessoal de Saúde , HumanosRESUMO
CONTEXT: Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. OBJECTIVES: 1) Explore patients' and caregivers' expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. METHODS: Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. RESULTS: Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). CONCLUSION: Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.
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Serviços de Assistência Domiciliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Adulto , Cuidadores , Hospitais , Humanos , Cuidados Paliativos , Alta do Paciente , Estudos Prospectivos , Pesquisa QualitativaRESUMO
CONTEXT: Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. OBJECTIVE: To explore patient and caregiver understanding and valuation of "continuity of care" while transitioning from an in-hospital to a home-based palliative care team. METHODS: Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. RESULTS: Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. CONCLUSION: Patients' and their caregivers' valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.
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Cuidadores , Cuidados Paliativos , Idoso , Continuidade da Assistência ao Paciente , Feminino , Hospitais , Humanos , Pessoa de Meia-Idade , Percepção , Pesquisa QualitativaRESUMO
Background: Fear of cancer recurrence (FCR) is a common concern for posttreatment cancer survivors. In this secondary analysis we explore cancer survivors' unsolicited narratives on a survey about FCR. Methods: We used an interpretive descriptive approach and statistical analyses to explore these narratives and determine the characteristics of survivors who did and did not provide narratives. Findings: We developed three themes based on our analysis: describe posttreatment experiences; elaborate or contextualize FCR responses and use their voice toward change in cancer care. Those who provided narratives had lower overall FCR. Most narratives were used to provide context to responses or to indicate that some survey items were irrelevant. Conclusion: Our results highlight potential reasons for unsolicited narratives on a survey and illuminate the potential value of expressive interventions for cancer survivors. Results indicate the usefulness of mixed methods approaches where survey respondents are offered space to provide open text.