RESUMEN
BACKGROUND: Patients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings. METHODS: We developed a new tool designed to address these gaps. The 25 item scale was tested and refined using randomly cross-validated exploratory and confirmatory factor analyses. Participants were not yet hospice eligible but sick enough to receive benefits of a supportive care approach in the last 2 to 3 years of life. Full information maximum likelihood models were run to confirm the factor structure developed in exploratory analyses. Goodness-of-fit was assessed with the Comparative Fit Index, the Tucker-Lewis Index, and the Root Mean Square Error of Approximation. Test-retest reliability was assessed with the intraclass correlation coefficient and internal consistency of the final scale was examined using Cronbach's alpha. RESULTS: Exploratory factor analysis revealed three domains - Care Team, Communication, and Care Goals - after removing weak loading and cross loading items. The initial three domain measurement model suggested in the development cohort was tested in the validation cohort and exhibited poor fit X 2 (206) = 565.37, p < 0.001; CFI = 0.879; TLI = 0.864; RMSEA = 0.076. After model respecification, including removing one additional item and allowing paths between theoretically plausible error terms, the final 21 item tool exhibited good fit X 2 (173) = 295.63, p < 0.001; CFI = 0.958; TLI = 0.949; RMSEA = 0.048. Cronbach's alpha revealed high reliability of each domain (Care Team = 0.92, Communication = 0.83, Care Goals = 0.77) and the entire scale (α = 0.91). ICC showed adequate test-retest validity (ICC = 0.58; 95% CI: 0.52-0.65) of the full scale. CONCLUSIONS: When administered earlier in the chronic illness trajectory, a new patient experience scale focused on care teams across settings, communication, and care goals, displayed strong reliability and performed well psychometrically. TRIAL REGISTRATIONS: This trial ( NCT01746446 ) was registered at ClinicalTrials.gov on November 27, 2012 (retrospectively registered).
Asunto(s)
Demencia/terapia , Insuficiencia Cardíaca/terapia , Neoplasias/terapia , Satisfacción del Paciente , Indicadores de Calidad de la Atención de Salud/normas , Anciano , Enfermedad Crónica , Atención a la Salud/normas , Demencia/psicología , Femenino , Insuficiencia Cardíaca/psicología , Humanos , Masculino , Minnesota , Neoplasias/psicología , Planificación de Atención al Paciente , Grupo de Atención al Paciente/normas , Comodidad del Paciente/normas , Relaciones Profesional-Paciente , Psicometría , Encuestas y Cuestionarios/normas , WisconsinRESUMEN
Abstract Introduction. Data on the clinical interventions performed by emergency medical responder firefighters (EMRFs) are limited outside the context of cardiac arrest. We sought to understand the broader medical role of firefighters by examining fire-ambulance arrival order and documenting specific interventions provided by firefighters with advanced EMR training. Methods. A secondary analysis was conducted using electronic patient care records from a single ambulance service and two municipal fire departments that partner to provide emergency response in two suburbs of Minneapolis, Minnesota. Firefighters in both municipalities are dispatched to all medical calls, regardless of severity, and receive training in the following advanced EMR skills: intravenous line placement, administration of oral nitroglycerin and aspirin, placement of supraglottic airways, administration of albuterol via nebulizer, and injections of intramuscular glucagon and epinephrine. Time stamps for unit arrival on scene were used to determine arrival order and to quantify fire lead time (i.e., the interval EMRFs were on scene before paramedics). Results. Fire and ambulance records were linked for 10,403 patient encounters that occurred over 2.5 years. EMRFs arrived first in 9,001 calls (88%) with an average fire lead time of 4.5 minutes. In the two communities, firefighters performed at least one of the six advanced training interventions in 688 patient encounters (7.6%) when they reached the patient first, the most frequent being intravenous line placement (n = 340; 3.8%) and administration of oral nitroglycerin or aspirin (n = 303; 3.4%). EMRFs arrived first to 96 cases of cardiac arrest and performed chest compressions in 78%, automated external defibrillator use in 44%, supraglottic airway placement in 32%, and intravenous line starts in 18%. A modest positive association was observed between increasing fire lead time and use of cardiac arrest interventions by EMRFs. Conclusions. EMRFs performed advanced EMR training interventions in a small fraction of the patients they were able to reach before paramedics, and further study of the clinical significance of these interventions in the hands of this responder group is needed. EMRF training in these communities should continue to emphasize the fervent and consistent application of BLS resuscitation interventions in victims of cardiac arrest.
RESUMEN
BACKGROUND: Black patients with hemophilia A (factor VIII deficiency) are twice as likely as white patients to produce inhibitors against factor VIII proteins given as replacement therapy. There are six wild-type factor VIII proteins, designated H1 through H6, but only two (H1 and H2) match the recombinant factor VIII products used clinically. H1 and H2 are found in all racial groups and are the only factor VIII proteins found in the white population to date. H3, H4, and H5 have been found only in blacks. We hypothesized that mismatched factor VIII transfusions contribute to the high incidence of inhibitors among black patients. METHODS: We sequenced the factor VIII gene (F8) in black patients with hemophilia A to identify causative mutations and the background haplotypes on which they reside. Results from previous Bethesda assays and information on the baseline severity of hemophilia, age at enrollment, and biologic relationships among study patients were obtained from review of the patients' medical charts. We used multivariable logistic regression to control for these potential confounders while testing for associations between F8 haplotype and the development of inhibitors. RESULTS: Of the 78 black patients with hemophilia enrolled, 24% had an H3 or H4 background haplotype. The prevalence of inhibitors was higher among patients with either of these haplotypes than among patients with haplotype H1 or H2 (odds ratio, 3.6; 95% confidence interval, 1.1 to 12.3; P=0.04), despite a similar spectrum of hemophilic mutations and degree of severity of illness in these two subgroups. CONCLUSIONS: These preliminary results suggest that mismatched factor VIII replacement therapy may be a risk factor for the development of anti-factor VIII alloantibodies.
Asunto(s)
Población Negra/genética , Inhibidores de Factor de Coagulación Sanguínea/inmunología , Factor VIII/genética , Factor VIII/inmunología , Hemofilia A/etnología , Hemofilia A/inmunología , Adolescente , Adulto , Secuencia de Aminoácidos , Anticuerpos , Inhibidores de Factor de Coagulación Sanguínea/genética , Niño , Preescolar , Factor VIII/uso terapéutico , Haplotipos , Hemofilia A/genética , Hemofilia A/terapia , Humanos , Isoanticuerpos , Masculino , Mutación , Polimorfismo de Nucleótido Simple , Factores de Riesgo , Adulto JovenRESUMEN
Whole-person care is a new paradigm for serious illness, but few programs have been robustly studied. We sought to test the effect of LifeCourse (LC), a person-centered program for patients living with serious illness, on health-care utilization, care experience, and quality of life, employing a quasi-experimental design with a Usual Care (UC) comparison group. The study was conducted 2012 to 2017 at an upper-Midwest not-for-profit health-care system with outcomes measured every 3 months until the end of life. Enrolled patients (N = 903) were estimated to be within 3 years of end of life and diagnosed with 1+ serious illness. Exclusion criteria included hospice enrollment at time of screening or active dying. Community health workers (CHWs) delivered standardized monthly 1-hour home visits based on palliative care guidelines and motivational interviewing to promote patients' physical, psychosocial, and financial well-being. Primary outcomes included health-care utilization and patient- and caregiver-experience and quality of life. Patients were elderly (LC 74, UC 78 years) and primarily non-Hispanic, white, living at home with cardiovascular disease as the primary diagnosis (LC 69%, UC 57%). A higher proportion of LC patients completed advance directives (N = 173, 38%) than UC patients (N = 66, 15%; P < .001). LifeCourse patients who died spent more days in hospice (88 ± 191 days) compared to UC patients (44 ± 71 days; P = .018). LifeCourse patients reported greater improvements than UC in communication as part of the care experience ( P = .016). Implementation of person-centered programs delivered by CHWs is feasible; inexpensive upstream expansion of palliative care models can yield benefits for patients and caregivers. Trial Registration: Trial NCT01746446 was registered on November 27, 2012 at ClinicalTrials.gov .
Asunto(s)
Cuidadores/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Atención Dirigida al Paciente/organización & administración , Calidad de Vida , Cuidado Terminal/organización & administración , Planificación Anticipada de Atención/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Agentes Comunitarios de Salud/organización & administración , Femenino , Cuidados Paliativos al Final de la Vida/organización & administración , Humanos , Masculino , Persona de Mediana Edad , Entrevista Motivacional , Cuidados Paliativos/organización & administración , Satisfacción del Paciente , Factores Socioeconómicos , Estados UnidosRESUMEN
BACKGROUND: Patients with serious chronic illness are at a greater risk of depersonalized, overmedicalized care as they move into later life. Existing intervention research on person-focused care for persons in this transitional period is limited. OBJECTIVE: To test the effects of LifeCourse, a team-based, whole-person intervention emphasizing listening to and knowing patients, on patient experience at 6 months. DESIGN: This is a quasi-experimental study with patients allocated to LifeCourse and comparison groups based on 2 geographic locations. Robust change-score regression models adjusted for baseline differences and confounding. SETTING/PARTICIPANTS: Patients (113 intervention, 99 comparison in analyses) were individuals with heart failure or other serious chronic illness, cancer, or dementia who had visits to hospitals at a large multipractice health system in the United States Midwest. MEASUREMENTS: Primary outcome was 6-month change in patient experience measured via a novel, validated 21-item patient experience tool developed specifically for this intervention. Covariates included demographics, comorbidity score, and primary diagnosis. RESULTS: At 6 months, LifeCourse was associated with a moderate improvement in overall patient experience versus usual care. Individual domain subscales for care team, communication, and patient goals were not individually significant but trended positively in the direction of effect. CONCLUSION: Person-focused, team-based interventions can improve patient experience with care at a stage fraught with overmedicalization and many care needs. Improvement in patient experience in LifeCourse represents the sum effect of small improvements across different domains/aspects of care such as relationships with and work by the care team.
Asunto(s)
Afecciones Crónicas Múltiples/terapia , Cuidados Paliativos/organización & administración , Grupo de Atención al Paciente/organización & administración , Satisfacción del Paciente , Atención Dirigida al Paciente/organización & administración , Factores de Edad , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores Sexuales , Factores SocioeconómicosRESUMEN
INTRODUCTION: Very little quantitative data on occupational burnout and exposure to critical incidents are available from contemporary United States emergency medical services (EMS) cohorts. Given that burnout has been associated positively with turnover intentions and absenteeism in EMS workers, studies that uncover correlates of burnout may be integral to combating growing concerns around retention in the profession. METHODS: We administered a 167-item electronic survey that included the Maslach Burnout Inventory (MBI) and a modified version of the Critical Incident History Questionnaire (n=29 incident types) to paramedics, emergency medical technicians (EMTs), and dispatchers of a single ambulance service. We defined the presence of burnout as a high score on either the emotional exhaustion or depersonalization subscales of the MBI. RESULTS: Survey respondents who provided regular 911 response at the time of the survey and completed the MBI portion of the survey were included in our analysis (190 paramedics/EMTs, 19 dispatchers; 54% response). The overall prevalence of burnout was 18%, with prevalence reaching 32% among dispatchers. The seven pediatric critical incident types presented in the survey accounted for seven of the top eight rated most difficult to cope with, and severity ratings for pediatric critical incidents did not differ by parental status (all p>0.30). A significant number of respondents reported that they had been threatened with a gun/weapon (43%) or assaulted by a patient (68%) at least once while on duty. Being over the age of 50, a parent, or in a committed relationship was associated with reduced odds of burnout in unadjusted models; however, these associations did not remain statistically significant in multivariate analysis. Increasing tertile of career exposure to critical incidents was not associated with burnout. CONCLUSION: Medical dispatchers may be an EMS subgroup particularly susceptible to burnout. These data also demonstrate quantitatively that in this EMS agency, responders find pediatric critical incidents especially distressing and that violence against responders is commonplace. In this study, a simple measure of career exposure to potentially critical incidents was not associated with burnout; however, individual reactions to incidents are heterogeneous, and assessment tools that more accurately enumerate encounters that result in distress are needed.
Asunto(s)
Agotamiento Profesional/epidemiología , Operador de Emergencias Médicas/psicología , Servicios Médicos de Urgencia , Auxiliares de Urgencia/psicología , Adolescente , Adulto , Estudios de Cohortes , Estudios Transversales , Femenino , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Minnesota/epidemiología , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND AND OBJECTIVES: The increased demand on providers from health care systems combined with the complex and difficult practice of medicine contributes to provider stress and burnout. In order to develop effective, sustainable interventions for provider burnout, it is important to understand the lived experiences of providers and their perceptions of its causative factors. We describe focus group findings that explore provider perceptions and offer suggestions for future actions. METHODS: We convened six focus groups in five clinics involving 44 participants and used a common set of questions for each group. Real-time follow-up questions varied as needed to clarify or explore specific themes. We asked for descriptions of providers' daily work, their ability to complete that work, and the frustrations associated with accomplishing their tasks. In addition, providers were asked about transparency of decision making and their perceptions of control in the workplace. RESULTS: Three major themes evolved from these focus groups: the perceived impact of the work environment, work tasks, and "e-stress." CONCLUSIONS: Our findings suggest three competing tensions contribute to provider burnout, none of which were attributable to patient volume or complexity. These tensions were described as originating from clinician experience of management practices and new requirements in the work environment, tension between direct patient care and non-direct patient care work tasks, and "e-stress" caused by the digital presence in providers' work lives.
Asunto(s)
Atención Ambulatoria/psicología , Agotamiento Profesional/etiología , Agotamiento Profesional/psicología , Médicos/psicología , Lugar de Trabajo/organización & administración , Adulto , Registros Electrónicos de Salud , Femenino , Grupos Focales , Humanos , Relaciones Interprofesionales , Masculino , Persona de Mediana Edad , Percepción , Relaciones Médico-Paciente , Autonomía Profesional , Profesionalismo , Factores de Tiempo , Carga de Trabajo/psicología , Lugar de Trabajo/psicologíaRESUMEN
Burnout has been identified as an occupational hazard in the helping professions for many years and is often overlooked, as health-care systems strive to improve cost and quality. The Maslach Burnout Inventory (MBI) and the Areas of Worklife Survey (AWS) are tools for assessing burnout prevalence and its associated factors. We describe how we used them in outpatient clinics to assess burnout for multiple job types. Traditional statistical techniques and seemingly unrelated regression were used to describe the sample and evaluate the association between work life domains and burnout. Of 838 eligible participants, 467 (55.7%) were included for analysis. Burnout prevalence varied across three job categories: providers (37.5%), clinical assistants (24.6%), and other staff (28.0%). It was not related to age, gender, or years of tenure but was lower in part-time workers (24.6%) than in full-time workers (33.9%). Analysis of the AWS subscales identified organizational correlates of burnout. Accurately identifying and defining the operative system factors associated with burnout will make it possible to create successful interventions. Using the MBI and the AWS together can highlight the relationship between system work experiences and burnout.
Asunto(s)
Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , Personal de Salud/psicología , Atención Primaria de Salud/organización & administración , Encuestas y Cuestionarios/normas , Adulto , Agotamiento Profesional/diagnóstico , Servicios de Salud Comunitaria/organización & administración , Servicios de Salud Comunitaria/estadística & datos numéricos , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Atención Primaria de Salud/estadística & datos numéricos , Factores de Tiempo , Equilibrio entre Vida Personal y LaboralRESUMEN
INTRODUCTION: We aimed to pilot test the delivery of sepsis education to emergency medical services (EMS) providers and the feasibility of equipping them with temporal artery thermometers (TATs) and handheld lactate meters to aid in the prehospital recognition of sepsis. METHODS: This study used a convenience sample of prehospital patients meeting established criteria for sepsis. Paramedics received education on systemic inflammatory response syndrome (SIRS) criteria, were trained in the use of TATs and hand-held lactate meters, and enrolled patients who had a recent history of infection, met ≥ 2 SIRS criteria, and were being transported to a participating hospital. Blood lactate was measured by paramedics in the prehospital setting and again in the emergency department (ED) via usual care. Paramedics entered data using an online database accessible at the point of care. RESULTS: Prehospital lactate values obtained by paramedics ranged from 0.8 to 9.8 mmol/L, and an elevated lactate (i.e. ≥ 4.0) was documented in 13 of 112 enrolled patients (12%). The unadjusted correlation of prehospital and ED lactate values was 0.57 (p< 0.001). The median interval between paramedic assessment of blood lactate and the electronic posting of the ED-measured lactate value in the hospital record was 111 minutes. Overall, 91 patients (81%) were hospitalized after ED evaluation, 27 (24%) were ultimately diagnosed with sepsis, and 3 (3%) died during hospitalization. Subjects with elevated prehospital lactate were somewhat more likely to have been admitted to the intensive care unit (23% vs 15%) and to have been diagnosed with sepsis (38% vs 22%) than those with normal lactate levels, but these differences were not statistically significant. CONCLUSION: In this pilot, EMS use of a combination of objective SIRS criteria, subjective assessment of infection, and blood lactate measurements did not achieve a level of diagnostic accuracy for sepsis that would warrant hospital prenotification and committed resources at a receiving hospital based on EMS assessment alone. Nevertheless, this work provides an early model for increasing EMS awareness and the implementation of novel devices that may enhance the prehospital assessment for sepsis. Additional translational research studies with larger numbers of patients and more robust methods are needed.