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BACKGROUND: Home blood pressure measurements have equal or even greater predictive value than clinic blood pressure measurements regarding cardiovascular outcomes. With advances in home blood pressure monitors, we face an imminent flood of home measurements, but current electronic health record systems lack the functionality to allow us to use this data to its fullest. We designed a data visualization display for blood pressure measurements to be used for shared decision making around hypertension. METHODS: We used an iterative, rapid-prototyping, user-centred design approach to determine the most appropriate designs for this data display. We relied on visual cognition and human factors principles when designing our display. Feedback was provided by expert members of our multidisciplinary research team and through a series of end-user focus groups, comprised of either hypertensive patients or their healthcare providers required from eight academic, community-based practices in the Midwest of the United States. RESULTS: A total of 40 participants were recruited to participate in patient (N = 16) and provider (N = 24) focus groups. We describe the conceptualization and development of data display for shared decision making around hypertension. We designed and received feedback from both patients and healthcare providers on a number of design elements that were reported to be helpful in understanding blood pressure measurements. CONCLUSIONS: We developed a data display for substantial amounts of blood pressure measurements that is both simple to understand for patients, but powerful enough to inform clinical decision making. The display used a line graph format for ease of understanding, a LOWESS function for smoothing data to reduce the weight users placed on outlier measurements, colored goal range bands to allow users to quickly determine if measurements were in range, a medication timeline to help link recorded blood pressure measurements with the medications a patient was taking. A data display such as this, specifically designed to encourage shared decision making between hypertensive patients and their healthcare providers, could help us overcome the clinical inertia that often results in a lack of treatment intensification, leading to better care for the 35 million Americans with uncontrolled hypertension.
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Visualización de Datos , Hipertensión , Presión Sanguínea , Servicios de Salud Comunitaria , Humanos , Hipertensión/diagnóstico , Hipertensión/terapia , Estados UnidosRESUMEN
BACKGROUND: Nearly half of US adults with diagnosed hypertension have uncontrolled blood pressure. Clinical inertia may contribute, including patient-physician uncertainty about how variability in blood pressures impacts overall control. Better information display may support clinician-patient hypertension decision making through reduced cognitive load and improved situational awareness. METHODS: A multidisciplinary team employed iterative user-centered design to create a blood pressure visualization EHR prototype that included patient-generated blood pressure data. An attitude and behavior survey and 10 focus groups with patients (N = 16) and physicians (N = 24) guided iterative design and confirmation phases. Thematic analysis of qualitative data yielded insights into patient and physician needs for hypertension management. RESULTS: Most patients indicated measuring home blood pressure, only half share data with physicians. When receiving home blood pressure data, 88% of physicians indicated entering gestalt averages as text into clinical notes. Qualitative findings suggest that including a data visualization that included home blood pressures brought this valued data into physician workflow and decision-making processes. Data visualization helps both patients and physicians to have a fuller understanding of the blood pressure 'story' and ultimately promotes the activated engaged patient and prepared proactive physician central to the Chronic Care Model. Both patients and physicians expressed concerns about workflow for entering and using home blood pressure data for clinical care. CONCLUSIONS: Our user-centered design process with physicians and patients produced a well-received blood pressure visualization prototype that includes home blood pressures and addresses patient-physician information needs. Next steps include evaluating a recent EHR visualization implementation, designing annotation functions aligned with users' needs, and addressing additional stakeholders' needs (nurses, care managers, caregivers). This significant innovation has potential to improve quality of care for hypertension through better patient-physician understanding of control and goals. It also has the potential to enable remote monitoring of patient blood pressure, a newly reimbursed activity, and is a strong addition to telehealth efforts.
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Visualización de Datos , Hipertensión , Médicos , Adulto , Presión Sanguínea , Femenino , Humanos , Hipertensión/diagnóstico , Hipertensión/terapia , Masculino , Persona de Mediana Edad , Relaciones Médico-PacienteRESUMEN
BACKGROUND: Uncontrolled hypertension is a significant health problem in the United States, even though multiple drugs exist to effectively treat this chronic disease. OBJECTIVE: As part of a larger project developing data visualizations to support shared decision making about hypertension treatment, we conducted a series of studies to understand how perceptions of hypertension control were impacted by data variations inherent in the visualization of blood pressure (BP) data. METHODS: In 3 Web studies, participants (internet sample of patients with hypertension) reviewed a series of vignettes depicting patients with hypertension; each vignette included a graph of a patient's BP. We examined how data visualizations that varied by BP mean and SD (Study 1), the pattern of change over time (Study 2), and the presence of extreme values (Study 3) affected patients' judgments about hypertension control and the need for a medication change. RESULTS: Participants' judgments about hypertension control were significantly influenced by BP mean and SD (Study 1), data trends (whether BP was increasing or decreasing over time-Study 2), and extreme values (ie, outliers-Study 3). CONCLUSIONS: Patients' judgment about hypertension control is influenced both by factors that are important predictors of hypertension related-health outcomes (eg, BP mean) and factors that are not (eg, variability and outliers). This study highlights the importance of developing data visualizations that direct attention toward clinically meaningful information.
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Antihipertensivos/uso terapéutico , Determinación de la Presión Sanguínea/métodos , Presión Sanguínea/fisiología , Hipertensión/terapia , Adulto , Anciano , Antihipertensivos/farmacología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estados Unidos , Adulto JovenRESUMEN
Perceptions of infectious diseases are important predictors of whether people engage in disease-specific preventive behaviors. Having accurate beliefs about a given infectious disease has been found to be a necessary condition for engaging in appropriate preventive behaviors during an infectious disease outbreak, while endorsing conspiracy beliefs can inhibit preventive behaviors. Despite their seemingly opposing natures, knowledge and conspiracy beliefs may share some of the same psychological motivations, including a relationship with perceived risk and self-efficacy (i.e., control). The 2015-2016 Zika epidemic provided an opportunity to explore this. The current research provides some exploratory tests of this topic derived from two studies with similar measures, but different primary outcomes: one study that included knowledge of Zika as a key outcome and one that included conspiracy beliefs about Zika as a key outcome. Both studies involved cross-sectional data collections that occurred during the same two periods of the Zika outbreak: one data collection prior to the first cases of local Zika transmission in the United States (March-May 2016) and one just after the first cases of local transmission (July-August). Using ordinal logistic and linear regression analyses of data from two time points in both studies, the authors show an increase in relationship strength between greater perceived risk and self-efficacy with both increased knowledge and increased conspiracy beliefs after local Zika transmission in the United States. Although these results highlight that similar psychological motivations may lead to Zika knowledge and conspiracy beliefs, there was a divergence in demographic association.
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Demografía , Infección por el Virus Zika/transmisión , Estudios Transversales , Brotes de Enfermedades , Conocimientos, Actitudes y Práctica en Salud , Humanos , Factores de Riesgo , Autoeficacia , Infección por el Virus Zika/epidemiología , Infección por el Virus Zika/psicologíaRESUMEN
HIV/AIDS stigma exists in healthcare and is harmful to people living with HIV (PLWH). Few anti-stigma interventions target undergraduate health professions students, although evidence supports reaching providers early in their training. We developed two different arts-based interventions based on Intergroup Contact Theory: a Photovoice intervention in which they viewed photo-stories of PLWH and a fiction writing intervention in which they developed characters with HIV. We present the results of a qualitative analysis of the post-intervention interviews, to elaborate on what and how students learned from both interventions. Via theme analysis, we identified three similar patterns among both sets of intervention participants. Interventions helped students to understand PLWH as "people first," experience emotional responses to PLWH, and complicated their understanding of who was living with HIV. All three themes illustrate how Photovoice and fiction writing interrupted stereotypes about PLWH and humanized PLWH to health professions students.
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Infecciones por VIH/psicología , Empleos en Salud/educación , Fotograbar , Estigma Social , Estudiantes/psicología , Escritura , Femenino , Conocimientos, Actitudes y Práctica en Salud , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Humanos , Masculino , Investigación Cualitativa , Población UrbanaRESUMEN
Background: How can we use stories from other people to promote better health experiences, improve judgments about health, and increase the quality of medical decisions without introducing bias, systematically persuading the listeners to change their attitudes, or altering behaviors in nonoptimal ways? More practically, should narratives be used in health education, promotion, or behavior change interventions? Method: In this article, we address these questions by conducting a narrative review of a diverse body of literature on narratives from several disciplines to gain a better understanding about what narratives do, including their role in communication, engagement, recall, persuasion, and health behavior change. We also review broad theories about information processing and persuasion from psychology and more specific models about narrative messaging found in the health communication and marketing literatures to provide insight into the processes by which narratives have their effect on health behavior. Results: To address major gaps in our theoretical understanding about how narratives work and what effects they will have on health behavior, we propose the Narrative Immersion Model, whose goal is to identify the parameters that predict the specific impact of a particular narrative (e.g. persuade, inform, comfort, etc.) based on the type of narrative message (e.g. process, experience, or outcome narrative). Further, the Narrative Immersion Model describes the magnitude of the effect as increasing through successive layers of engagement with the narrative: interest, identification, and immersion. Finally, the Narrative Immersion Model identifies characteristics of the narrative intervention that encourage greater immersion within a given narrative. Conclusions: We believe there are important communication gaps in areas areas of behavioral medicine that could be addressed with narratives; however, more work is needed in order to employ narrative messaging systematically. The Narrative Immersion Model advances our theoretical understanding about narrative processing and its subsequent effects on knowledge, attitudes, and behavior.
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Medicina de la Conducta/métodos , Conductas Relacionadas con la Salud , Promoción de la Salud/métodos , Modelos Teóricos , Narrativas Personales como Asunto , Comunicación Persuasiva , HumanosRESUMEN
Health journalists frequently use narratives to bring news stories to life, with little understanding about how this influences the health behavior of readers. This study was designed to examine the effect of a New York Times health news article about a person who developed a life-threatening illness after using ibuprofen on readers' future use of ibuprofen. We recruited an Internet sample (N = 405) to participate in a longitudinal study examining ibuprofen use before, immediately following, and two weeks after reading the story. Ibuprofen use two-weeks after reading the heath news article was significantly lower than baseline use. Furthermore, intentions to use ibuprofen were also significantly reduced suggesting that the observed behavior change may persist beyond the two-week period studied. Health journalists should be cautious in their use of stories about health outcomes, particularly when those stories deviate from data about objective risks.
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Conductas Relacionadas con la Salud , Periodismo , Narración , Lectura , Adulto , Atención , Femenino , Humanos , Estudios Longitudinales , Masculino , Medios de Comunicación de MasasRESUMEN
Medication adherence is essential to promote the health of people living with HIV (PL-HIV) and prevent HIV transmission in the U.S. Novel medication health promotion interventions are needed that address patient-centeredness, understandability, and communication with providers. The aims of this article are to define the systematic stages we used to develop an effective health promotion intervention via the products (e.g. images and stories) of Photovoice. We designed an intervention to improve HIV adherence knowledge, attitudes, and communication with providers through Photovoice. 16 PL-HIV used Photovoice strategies to describe their experiences with medication via images and captions and create an intervention (10 adherence promotion posters) that integrated photo-stories of their adherence motivators, journeys from sickness to health, and how they manage and counter HIV stigma. We outline the systematic process we used to adapt Photovoice to create the effective intervention for replication. The process included six stages: (i) identify scope of the project; (ii) create collaborative project team; (iii) design project materials; (iv) review and revise materials with team members; (v) disseminate materials; and (vi) evaluate materials. Photovoice is used traditionally as a social action research method. In this project, it was adapted to create patient-driven images and stories for health promotion posters. Poster viewers experienced improved self-efficacy for HIV medication adherence. Describing the adaptation of the Photovoice process in a deliberate and transparent way can support fidelity to the essence of the participant-driven method, while also allowing researchers and practitioners to replicate Photovoice as a successful health promotion intervention.
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Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/psicología , Conocimientos, Actitudes y Práctica en Salud , Promoción de la Salud/métodos , Cumplimiento de la Medicación , Humanos , Comunicación Interdisciplinaria , Entrevistas como Asunto , Fotograbar , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , AutoeficaciaRESUMEN
Adherence to antiretroviral medication among people living with HIV (PL-HIV) is critical to individual and public health. By some estimates only a quarter of PL-HIV are sufficiently adherent, underscoring a continued need for adherence-promoting strategies. In this analysis we explore the effect of adherence education posters developed via Photovoice. A group of PL-HIV generated images and captions to describe their adherence experiences and used their photo-stories to design 10 posters. We assessed viewers' ( N = 111) adherence knowledge, self-efficacy, and communication changes quantitatively and qualitatively before and 3 months after poster placement in the clinic. We analyzed quantitative data with an independent groups t test or a Mann-Whitney test, and qualitative interviews via theme analysis. Quantitative findings indicated no significant differences. Qualitative interviewees said that posters enhanced knowledge with nonthreatening, relatable information; self-efficacy by motivating patients to take medicine and disclose HIV to others; and communication by facilitating adherence conversations and creating a visually supportive clinic. Divergent quantitative and qualitative findings can be partially explained by inquiry methods. The posters may be more effective as part of discussions about their content, like those facilitated by qualitative interviews. Additional research regarding the application of Photovoice to health promotion is warranted.
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Infecciones por VIH/psicología , Promoción de la Salud/métodos , Cumplimiento de la Medicación/psicología , Fotograbar , Autoeficacia , Adulto , Femenino , Infecciones por VIH/tratamiento farmacológico , Humanos , Masculino , Evaluación de Programas y Proyectos de SaludRESUMEN
This study was designed to (1) evaluate the effect of narratives used in a popular, publicly available patient decision aid for early-stage breast cancer on hypothetical treatment decisions and attitudes toward the decision aid and (2) explore the moderating effects of participant numeracy, electronic health literacy and decision-making style. Two hundred women were asked to imagine that they had been diagnosed with early-stage breast cancer and viewed one of two versions of a video decision aid for early-stage breast cancer. The narrative version of the aid included stories from breast cancer survivors; the control version had no patient stories. After viewing the video decision aid, participants made a hypothetical treatment choice between lumpectomy with radiation and mastectomy, answered several questions about their decision, and evaluated the quality of the decision aid. Participants received $100 for completing the study. The two conditions differed in their motivations for the treatment decision and perceptions of the aid's trustworthiness and emotionality but showed no differences in preferences for surgical treatments or evaluations of the decision aid's quality. However, the impact of patient narratives was moderated by numeracy and electronic health literacy. Higher levels of numeracy were associated with decreased decisional confidence and lower ratings of trustworthiness for the decision aid in the narrative video condition but not in the control video condition. In contrast, higher levels of electronic health literacy were associated with increased decisional confidence and greater perceptions of trustworthiness and credibility of the decision aid in the narrative video condition but not the control video condition.
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Neoplasias de la Mama/cirugía , Técnicas de Apoyo para la Decisión , Narración , Prioridad del Paciente , Adulto , Anciano , Neoplasias de la Mama/patología , Neoplasias de la Mama/psicología , Femenino , Humanos , Persona de Mediana Edad , Medio Oeste de Estados Unidos , Grabación en Video , Adulto JovenRESUMEN
Long-acting injectable antiretroviral therapy (LAI ART) has the potential to address adherence obstacles associated with daily oral ART, leading to enhanced treatment uptake, adherence, and viral suppression among people living with HIV (PLWH). Yet, its potential may be limited due to ongoing disparities in availability and accessibility. We need a better understanding of the organizational context surrounding the implementation of LAI ART, and to inform its widespread rollout, we conducted 38 in-depth interviews with medical and social service providers who offer HIV care at private and hospital-based clinics across six US cities. Our findings highlight real-world implementation barriers outside of clinical trial settings. Providers described ongoing and anticipated barriers across three stages of LAI ART implementation: (1) Patient enrollment (challenges registering patients and limited insurance coverage), (2) medication delivery (insufficient personnel and resources), and (3) leadership and management (lack of interprofessional coordination and a lack of programming guidelines). Providers described how these barriers would have a disproportionate impact on under-resourced clinics, potentially exacerbating existing disparities in LAI ART access and adherence. Our findings suggest strategies that clinic leadership, policymakers, and other stakeholders can pursue to promote rapid and equitable LAI ART implementation in clinics across the United States. Resource and staffing investments could support clinics to begin, sustain, and scale up LAI ART delivery; additionally, the establishment of guidelines and tools could facilitate wider adoption of LAI ART across clinical settings. These efforts are crucial to promote resourced, standardized, and equitable implementation of LAI ART and maximize its potential to help end the HIV epidemic.
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Fármacos Anti-VIH , Infecciones por VIH , Humanos , Fármacos Anti-VIH/uso terapéutico , Antirretrovirales/uso terapéutico , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/epidemiología , Investigación Cualitativa , Encuestas y Cuestionarios , Estados Unidos/epidemiologíaRESUMEN
INTRODUCTION: Hypertension, the clinical condition of persistent high blood pressure (BP), is preventable yet remains a significant contributor to poor cardiovascular outcomes. Digital self-management support tools can increase patient self-care behaviours to improve BP. We created a patient-facing and provider-facing clinical decision support (CDS) application, called the Collaboration Oriented Approach to Controlling High BP (COACH), to integrate home BP data, guideline recommendations and patient-centred goals with primary care workflows. We leverage social cognitive theory principles to support enhanced engagement, shared decision-making and self-management support. This study aims to measure the effectiveness of the COACH intervention and evaluate its adoption as part of BP management. METHODS AND ANALYSIS: The study design is a multisite, two-arm hybrid type III implementation randomised controlled trial set within primary care practices across three health systems. Randomised participants are adults with high BP for whom home BP monitoring is indicated. The intervention arm will receive COACH, a digital web-based intervention with effectively enhanced alerts and displays intended to drive engagement with BP lowering; the control arm will receive COACH without the alerts and a simple display. Outcome measures include BP lowering (primary) and self-efficacy (secondary). Implementation preplanning and postevaluation use the Consolidated Framework for Implementation Research and Reach-Effectiveness-Adoption-Implementation-Maintenance metrics with iterative cycles for qualitative integration into the trial and its quantitative evaluation. The trial analysis includes logistic regression and constrained longitudinal data analysis. ETHICS AND DISSEMINATION: The trial is approved under a single IRB through the University of Missouri-Columbia, #2091483. Dissemination of the intervention specifications and results will be through open-source mechanisms. TRIAL REGISTRATION NUMBER: NCT06124716.
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Hipertensión , Adulto , Femenino , Humanos , Monitoreo Ambulatorio de la Presión Arterial/métodos , Sistemas de Apoyo a Decisiones Clínicas , Hipertensión/terapia , Atención Primaria de Salud , Ensayos Clínicos Controlados Aleatorios como Asunto , Autocuidado/métodos , Automanejo/métodosRESUMEN
BACKGROUND: Previous research has examined the impact of patient narratives on treatment choices, but to our knowledge, no study has examined the effect of narratives on information search. Further, no research has considered the relative impact of their format (text vs video) on health care decisions in a single study. OBJECTIVE: Our goal was to examine the impact of video and text-based narratives on information search in a Web-based patient decision aid for early stage breast cancer. METHODS: Fifty-six women were asked to imagine that they had been diagnosed with early stage breast cancer and needed to choose between two surgical treatments (lumpectomy with radiation or mastectomy). Participants were randomly assigned to view one of four versions of a Web decision aid. Two versions of the decision aid included videos of interviews with patients and physicians or videos of interviews with physicians only. To distinguish between the effect of narratives and the effect of videos, we created two text versions of the Web decision aid by replacing the patient and physician interviews with text transcripts of the videos. Participants could freely browse the Web decision aid until they developed a treatment preference. We recorded participants' eye movements using the Tobii 1750 eye-tracking system equipped with Tobii Studio software. A priori, we defined 24 areas of interest (AOIs) in the Web decision aid. These AOIs were either separate pages of the Web decision aid or sections within a single page covering different content. RESULTS: We used multilevel modeling to examine the effect of narrative presence, narrative format, and their interaction on information search. There was a significant main effect of condition, P=.02; participants viewing decision aids with patient narratives spent more time searching for information than participants viewing the decision aids without narratives. The main effect of format was not significant, P=.10. However, there was a significant condition by format interaction on fixation duration, P<.001. When comparing the two video decision aids, participants viewing the narrative version spent more time searching for information than participants viewing the control version of the decision aid. In contrast, participants viewing the narrative version of the text decision aid spent less time searching for information than participants viewing the control version of the text decision aid. Further, narratives appear to have a global effect on information search; these effects were not limited to specific sections of the decision aid that contained topics discussed in the patient stories. CONCLUSIONS: The observed increase in fixation duration with video patient testimonials is consistent with the idea that the vividness of the video content could cause greater elaboration of the message, thereby encouraging greater information search. Conversely, because reading requires more effortful processing than watching, reading patient narratives may have decreased participant motivation to engage in more reading in the remaining sections of the Web decision aid. These findings suggest that the format of patient stories may be equally as important as their content in determining their effect on decision making. More research is needed to understand why differences in format result in fundamental differences in information search.
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Neoplasias de la Mama/cirugía , Técnicas de Apoyo para la Decisión , Internet , Telemedicina , Adulto , Anciano , Neoplasias de la Mama/psicología , Toma de Decisiones , Movimientos Oculares , Femenino , Humanos , Conducta en la Búsqueda de Información , Persona de Mediana Edad , Participación del Paciente , Grabación en VideoRESUMEN
BACKGROUND: Patient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others' experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions. METHODS: A survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people's healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings. RESULTS: Of 734 citations identified, 11 were included describing 13 studies. All studies found participants' judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both "system 1" (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and "system 2" (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies. CONCLUSIONS: There is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people's informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another's values, and c) motivates people equally to engage with healthcare resources.
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Información de Salud al Consumidor , Técnicas de Apoyo para la Decisión , Investigación sobre Servicios de Salud , Participación del Paciente , Comunicación , Toma de Decisiones , Humanos , NarraciónRESUMEN
OBJECTIVE: To compare results of three preference elicitation methods for a cancer screening test. METHODS: Participants (undergraduate students) completed a discrete choice experiment (DCE) and a threshold technique (TT) task. Accuracy (false positives, false negatives), benefits (lives saved), and cost for a cancer screening test were used as attributes in the DCE and branching logic for the TT. Participants were also asked a direct elicitation question regarding a hypothetical screening test for breast (women) or prostate (men) cancer without mortality benefit. Correlations assessed the relationship between DCE and TT thresholds. Thresholds were standardized and ranked for both methods to compare. A logistic regression used the thresholds to predict results of the direct elicitation. RESULTS: DCE and TT estimates were not meaningfully correlated (max ρ = 0.17). Participant rankings of attributes matched only 20% of the time (58/292). Neither method predicted preference for being screened (ps > 0.21). CONCLUSIONS: The DCE and TT yielded different preference estimates (and rank orderings) for the same participant. Neither method predicted patients' desires for a screening test. PRACTICE IMPLICATIONS: Clinicians, patients, policy makers, and researchers should be aware that patient preference results may be sensitive to the method of eliciting preferences.
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Conducta de Elección , Neoplasias , Masculino , Humanos , Femenino , Detección Precoz del Cáncer , Prioridad del Paciente , Neoplasias/diagnósticoRESUMEN
Purpose: Our aim was to understand the decision making of patients in hospital who wanted cardiopulmonary resuscitation despite low probability of benefit. Methods: We included patients admitted to general medical wards who had a low chance of surviving in-hospital cardiopulmonary resuscitation (CPR) and had an order in the chart to administer CPR. We developed an interview guide to explore participants' decision-making process, sources of information, and emotions associated with this decision. Results: We developed 3 themes from the data. 1) "Life is worth living . . . for now": Participants describe their enjoyment of life and desire to carry on in their current state. 2) "Making sense of CPR outcomes": Participants saw CPR outcomes as binary, either they live, or they die; deciding not to receive CPR means choosing death. Participants were optimistic they would survive CPR and cited personal experience and TV as information sources. 3) "Decision process": Participants did not engage in shared decision making. Instead, they were asked a binary yes/no question with no reflection on their values or discussion about harms or benefits. Limitations: The probability of successful CPR in our sample is unknown. Findings may be different in a population who is imminently dying but still requesting CPR. Conclusions: Participants chose CPR because they perceived life as worth living and CPR as a chance worth taking. Participants did not want to be left in a severely debilitated state but did not have accurate information about this risk. Implications: Decision making about CPR in-hospital can be improved if it is grounded in accurate risk understanding and the patient's values and wishes.
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OBJECTIVES: This study tested 2 hypotheses: (1) chemotherapy increases the rate of cognitive decline in breast and colorectal cancer patients beyond what is typical of normal aging and (2) chemotherapy results in systematic cognitive declines when compared with breast and colorectal cancer patients who did not receive chemotherapy. SUBJECTS: Data came from personal interviews with a prospective cohort of patients with breast (n=141) or colorectal cancer (n=224) with incident disease drawn from the nationally representative Health and Retirement Study (1998-2006) with linked Medicare claims. MEASURES: The 27-point modified Telephone Interview for Cognitive Status was used to assess cognitive functioning, focusing on memory and attention. We defined the smallest clinically significant change as 0.4 points per year. RESULTS: We used Bayesian hierarchical linear models to test the hypotheses, adjusting for multiple possible confounders. Eighty-eight patients were treated with chemotherapy; 277 were not. The mean age at diagnosis was 75.5. Patients were followed for a median of 3.1 years after diagnosis, with a range of 0 to 8.3 years. We found no differences in the rates of cognitive decline before and after diagnosis for patients who received chemotherapy in adjusted models (P=0.86, one-sided 95% posterior intervals lower bound: 0.09 worse after chemotherapy), where patients served as their own controls. Moreover, the rate of cognitive decline after diagnosis did not differ between patients who had chemotherapy and those who did not (P=0.84, one-sided 95% posterior intervals lower bound: 0.11 worse for chemotherapy group in adjusted model). CONCLUSIONS: There was no evidence of cognitive decline associated with chemotherapy in this sample of older adults with breast and colorectal cancer.
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Antineoplásicos/efectos adversos , Protocolos Antineoplásicos , Neoplasias de la Mama/tratamiento farmacológico , Trastornos del Conocimiento/inducido químicamente , Neoplasias Colorrectales/tratamiento farmacológico , Factores de Edad , Anciano , Anciano de 80 o más Años , Envejecimiento , Antineoplásicos/uso terapéutico , Teorema de Bayes , Neoplasias de la Mama/epidemiología , Trastornos del Conocimiento/epidemiología , Neoplasias Colorrectales/epidemiología , Femenino , Conductas Relacionadas con la Salud , Humanos , Entrevistas como Asunto , Masculino , Memoria , Estudios ProspectivosRESUMEN
PURPOSE: The US Preventive Services Task Force has changed their screening recommendations, encouraging informed patient choice and shared decision making as a result of emerging evidence. We aimed to compare the impact of a didactic intervention, a descriptive harms intervention, a narrative intervention, and a new risk communication strategy titled Aiding Risk Information learning through Simulated Experience (ARISE) on preferences for a hypothetical beneficial cancer screening test (one that reduces the chance of cancer death or extends life) versus a hypothetical screening test with no proven physical benefits. METHOD: A total of 3386 men and women aged 40 to 70 completed an online survey about prostate or breast cancer screening. Participants were randomly assigned to either an unbeneficial test condition (0 lives saved due to screening) or a beneficial test condition (1 life saved due to screening). Participants then reviewed 4 informational interventions about either breast (women) or prostate (men) cancer screening. First, participants were provided didactic information alongside an explicit recommendation. This was followed by a descriptive harms intervention in which the possible harms of overdetection were explained. Participants then viewed 2 additional interventions: a narrative and ARISE (an intervention in which participants learned about probabilities by viewing simulated outcomes). The order of these last 2 interventions was randomized. Preference for being screened with the test and knowledge about the test were measured. RESULTS: With each successive intervention, preferences for screening tests decreased an equivalent amount for both a beneficial and unbeneficial test. Knowledge about the screening tests was largely unimpacted by the interventions. CONCLUSIONS: Presenting detailed risk and benefit information, narratives, and ARISE reduced preferences for screening regardless of the net public benefit of screening.
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Neoplasias de la Mama , Detección Precoz del Cáncer , Neoplasias de la Mama/diagnóstico , Comunicación , Toma de Decisiones , Femenino , Humanos , Masculino , Tamizaje Masivo , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To assess the impact of patient health literacy, numeracy, and graph literacy on perceptions of hypertension control using different forms of data visualization. MATERIALS AND METHODS: Participants (Internet sample of 1079 patients with hypertension) reviewed 12 brief vignettes describing a fictitious patient; each vignette included a graph of the patient's blood pressure (BP) data. We examined how variations in mean systolic blood pressure, BP standard deviation, and form of visualization (eg, data table, graph with raw values or smoothed values only) affected judgments about hypertension control and need for medication change. We also measured patient's health literacy, subjective and objective numeracy, and graph literacy. RESULTS: Judgments about hypertension data presented as a smoothed graph were significantly more positive (ie, hypertension deemed to be better controlled) then judgments about the same data presented as either a data table or an unsmoothed graph. Hypertension data viewed in tabular form was perceived more positively than graphs of the raw data. Data visualization had the greatest impact on participants with high graph literacy. DISCUSSION: Data visualization can direct patients to attend to more clinically meaningful information, thereby improving their judgments of hypertension control. However, patients with lower graph literacy may still have difficulty accessing important information from data visualizations. CONCLUSION: Addressing uncertainty inherent in the variability between BP measurements is an important consideration in visualization design. Well-designed data visualization could help to alleviate clinical uncertainty, one of the key drivers of clinical inertia and uncontrolled hypertension.
Asunto(s)
Alfabetización en Salud , Hipertensión , Toma de Decisiones Clínicas , Humanos , Hipertensión/terapia , Juicio , IncertidumbreRESUMEN
BACKGROUND: Many women with HIV (WWH) have suboptimal adherence to oral antiretroviral therapy (ART) due to multilevel barriers to HIV care access and retention. A long-acting injectable (LAI) version of ART was approved by the US Food and Drug Administration in January 2021 and has the potential to overcome many of these barriers by eliminating the need for daily pill taking. However, it may not be optimal for all WWH. It is critical to develop tools that facilitate patient-provider shared decision making about oral versus LAI ART modalities to promote women's adherence and long-term HIV outcomes. OBJECTIVE: This study will develop and pilot test a web-based patient decision aid called i.ART+support (i.ARTs). This decision aid aims to support shared decision making between WWH and their providers, and help women choose between oral and LAI HIV treatment. METHODS: The study will occur in 3 phases. In phase 1, we will utilize a mixed methods approach to collect data from WWH and medical and social service providers to inform i.ARTs content. During phase 2, we will conduct focus groups with WWH and providers to refine i.ARTs content and develop the web-based decision aid. In phase 3, i.ARTs will be tested in a randomized controlled trial with 180 women in Miami, Florida, and assessed for feasibility, usability, and acceptability, as well as to evaluate the associations between receiving i.ARTs and viral suppression, ART pharmacy refills, and clinic attendance. RESULTS: This study was funded in March 2021. Columbia University's IRB approved the study protocols (approval number IRB-AAAT5314). Protocols for phase 1 interviews have been developed and interviews with service providers started in September 2021. We will apply for Clinicaltrials.gov registration prior to phase 3, which is when our first participant will be enrolled in the randomized controlled trial. This is anticipated to occur in April 2023. CONCLUSIONS: This study is the first to develop a web-based patient decision aid to support WWH choices between oral and LAI ART. Its strengths include the incorporation of both patient and provider perspectives, a mixed methods design, and implementation in a real-world clinical setting. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35646.