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BACKGROUND: Treatment with corticosteroids is common for patients with idiopathic and multiple sclerosis-associated optic neuritis (I/MS-ON). Yet, the Optic Neuritis Treatment Trial and meta-analyses confirm that few patients benefit and that visual benefit is of questionable clinical significance, short-lived, and comes with potential harms. The purpose of this study was to uncover the breadth of factors that underlie clinicians' treatment decisions and determine how these factors may influence corticosteroid use for I/MS-ON. METHODS: We performed semistructured, one-on-one, qualitative interviews with neurologists, neuro-ophthalmologists, and emergency department clinicians at 15 academic and private practices across the United States. The interview guide used the Theoretical Domain Framework and a vignette to explore numerous factors that might influence decision making for definite I/MS-ON. We analyzed transcripts using inductive thematic analysis to generate themes. RESULTS: A total of 22 clinicians were interviewed before thematic saturation was reached: 8 neuro-ophthalmologists, 8 neurologists, and 6 emergency medicine (EM) clinicians (2 physician assistants, 4 physicians). All neuro-ophthalmologists and nearly all neurologists (7 of 8) were aware of risks/benefits of corticosteroid treatment for I/MS-ON. However, neuro-ophthalmologists varied in their corticosteroid treatment recommendation (n = 3 recommended treatment, n = 2 recommended observation, n = 3 recommended shared decision making), whereas all neurologists recommended corticosteroids, indicating that knowledge of corticosteroid risk/benefit alone does not drive decision making. EM clinicians were not aware of risk/benefits of corticosteroid treatment for I/MS-ON and relied on the treatment recommendations of neurologists. Clinicians recommending corticosteroids held personal beliefs that corticosteroids benefit those with worse vision loss, relieve pain, allow earlier return to work, or have easily mitigated side effects. They also perceived that prescribing steroid was the principal method of "doing something," which fit a key provider role. Clinicians who did not recommend corticosteroids or were neutral perceived the risks as nontrivial, considered discussing treatment trade-offs as "doing something" and incorporated patient preferences. CONCLUSIONS: Knowledge of risk/benefits of corticosteroids are necessary but not sufficient for evidence-based I/MS-ON practice. Variation in how clinicians treat patients with acute I/MS-ON is influenced largely by psychosocial factors, such as beliefs about corticosteroid risk/benefit trade-offs and the role of the clinician to provide treatment. Interventions to support evidence-based decision making for I/MS-ON treatment will need to provide risk/benefit information to support clinicians with varying levels of expertise, incorporate patient preference, and normalize the option to observe.
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INTRODUCTION: Despite decades of research on risk-communication approaches, questions remain about the optimal methods for conveying risks for different outcomes across multiple time points, which can be necessary in applications such as discrete choice experiments (DCEs). We sought to compare the effects of 3 design factors: 1) separated versus integrated presentations of the risks for different outcomes, 2) use or omission of icon arrays, and 3) vertical versus horizontal orientation of the time dimension. METHODS: We conducted a randomized study among a demographically diverse sample of 2,242 US adults recruited from an online panel (mean age 59.8 y, s = 10.4 y; 21.9% African American) that compared risk-communication approaches that varied in the 3 factors noted above. The primary outcome was the number of correct responses to 12 multiple-choice questions asking survey respondents to identify specific numbers, contrast options to recognize dominance (larger v. smaller risks), and compute differences. We used linear regression to test the effects of the 3 design factors, controlling for health literacy, graph literacy, and numeracy. We also measured choice consistency in a subsequent DCE choice module. RESULTS: Mean comprehension varied significantly across versions (P < 0.001), with higher comprehension in the 3 versions that provided separated risk information for each risk. In the multivariable regression, separated risk presentation was associated with 0.58 more correct responses (P < 0.001; 95% confidence interval: 0.39, 0.77) compared with integrated risk information. Neither providing icon arrays nor using vertical versus horizontal time formats affected comprehension rates, although participant understanding did correlate with DCE choice consistency. CONCLUSIONS: In presentations of multiple risks over multiple time points, presenting risk information separately for each health outcome appears to increase understanding. HIGHLIGHTS: When conveying information about risks of different outcomes at multiple time points, separate presentations of single-outcome risks resulted in higher comprehension than presentations that combined risk information for different outcomes.We also observed benefits of presenting single-outcome risks separately among respondents with lower numeracy and graph literacy.Study participants who scored higher on risk understanding were more internally consistent in their responses to a discrete choice experiment.
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Conducta de Elección , Comprensión , Humanos , Persona de Mediana Edad , Femenino , Masculino , Anciano , Adulto , Medición de Riesgo/métodos , Comunicación , Alfabetización en Salud/métodos , Alfabetización en Salud/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
OBJECTIVES: We sought to analyze interactive visualizations and animations of health probability data (such as chances of disease or side effects) that have been studied in head-to-head comparisons with either static graphics or numerical communications. MATERIALS AND METHODS: Secondary analysis of a large systematic review on ways to communicate numbers in health. RESULTS: We group the research to show that 4 types of animated or interactive visualizations have been studied by multiple researchers: those that simulate experience of probabilistic events; those that demonstrate the randomness of those events; those that reduce information overload by directing attention sequentially to different items of information; and those that promote elaborative thinking. Overall, these 4 types of visualizations do not show strong evidence of improving comprehension, risk perception, or health behaviors over static graphics. DISCUSSION: Evidence is not yet strong that interactivity or animation is more effective than static graphics for communicating probabilities in health. We discuss 2 possibilities: that the most effective visualizations haven't been studied, and that the visualizations aren't effective. CONCLUSION: Future studies should rigorously compare participant performance with novel interactive or animated visualizations against their performance with static visualizations. Such evidence would help determine whether health communicators should emphasize novel interactive visualizations or rely on older forms of visual communication, which may be accessible to broader audiences, including those with limited digital access.
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Importance: Genetic researchers must have access to databases populated with data from diverse ancestral groups to ensure research is generalizable or targeted for historically excluded communities. Objective: To determine genetic researchers' interest in doing research with diverse ancestral populations, which database stewards offer adequate samples, and additional facilitators for use of diverse ancestral data. Design, Setting, and Participants: This survey study was conducted from June to December 2022 and was part of an exploratory sequential mixed-methods project in which previous qualitative results informed survey design. Eligible participants included genetic researchers who held US academic affiliations and conducted research using human genetic databases. Exposure: Internet-administered survey to genetic research professionals. Main Outcomes and Measures: The survey assessed respondents' experience and interest in research with diverse ancestral data, perceptions of adequacy of diverse data across database stewards (ie, private, government, or consortia), and identified facilitators for encouraging use of diverse ancestral data. Descriptive statistics, χ2 tests, and z tests were used to describe respondents' perspectives and experiences. Results: A total of 294 researchers (171 men [58.5%]; 121 women [41.2%]) were included in the study, resulting in a response rate of 20.4%. Across seniority level, 109 respondents (37.1%) were senior researchers, 85 (28.9%) were mid-level researchers, 71 (24.1%) were junior researchers, and 27 (9.2%) were trainees. Significantly more respondents worked with data from European ancestral populations (261 respondents [88.8%]) compared with any other ancestral population. Respondents who had not done research with Indigenous ancestral groups (210 respondents [71.4%]) were significantly more likely to report interest in doing so than not (121 respondents [41.2%] vs 89 respondents [30.3%]; P < .001). Respondents reported discrepancies in the adequacy of ancestral populations with significantly more reporting European samples as adequate across consortium (203 respondents [90.6%]), government (200 respondents [89.7%]), and private (42 respondents [80.8%]) databases, compared with any other ancestral population. There were no significant differences in reported adequacy of ancestral populations across database stewards. A majority of respondents without access to adequate diverse samples reported that increasing the ancestral diversity of existing databases (201 respondents [68.4%]) and increasing access to databases that are already diverse (166 respondents [56.5%]) would increase the likelihood of them using a more diverse sample. Conclusions and Relevance: In this survey study of US genetic researchers, respondents reported existing databases only provide adequate ancestral samples for European populations, despite their interest in other ancestral populations. These findings suggest there are specific gaps in access to and composition of genetic databases, highlighting the urgent need to boost diversity in research samples to improve inclusivity in genetic research practices.
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Gobierno , Pueblos Indígenas , Masculino , Humanos , Femenino , Bases de Datos Factuales , Internet , ProbabilidadRESUMEN
INTRODUCTION: Despite the mortality benefits of alcohol cessation and alcohol treatment, few patients with alcohol-related liver disease (ALD) get such treatment. To understand reasons for low treatment rates, we performed a qualitative mental models study to explore how ALD patients understand factors influencing alcohol cessation, relapse and their liver health. METHODS: Using a mental models framework, we interviewed experts in alcohol use disorder (AUD) and ALD to determine factors influencing alcohol cessation, risk of relapse and liver health. An expert influence diagram was constructed and used to develop a patient interview guide. We recruited participants with ALD enrolled in hepatology or transplant clinics at a single tertiary-care center. We conducted interviews either face-to-face or by phone, per participant preference. We transcribed all interviews verbatim and analyzed them using combined deductive coding schema based on both the interview guide and emergent coding. RESULTS: 25 (10 women, 15 men) participants with a mean age of 57 years completed interviews. 68 % had decompensated cirrhosis. Major omissions included gender (as a factor in alcohol use or liver disease) and the influence of benzodiazepines/opioids on relapse. Misconceptions were common, in particular the idea that the absence of urges to drink meant participants were safe from relapse. Conceptual differences from the expert model emerged as well. Participants tended to view the self as primary and the only thing that could influence relapse in many cases, resulting in a linear mental model with few nodes influencing alcohol cessation. Participants' risky drinking signals (i.e., elevated liver enzymes) differed from known definitions of hazardous or high-risk drinking, which largely emphasize dose of alcohol consumed irrespective of consequences. Finally, participants sometimes viewed stopping on one's own as the primary means of stopping alcohol use, not recognizing the many other nodes in the influence diagram impacting ability to stop alcohol. CONCLUSION: Patients with ALD had critical misconceptions, omissions, and conceptual reorganizations in their mental models of the ability to stop alcohol use. Attention to these differences may allow clinicians and researchers to craft more impactful interventions to improve rates of alcohol abstinence and AUD treatment engagement.
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Abstinencia de Alcohol , Hepatopatías Alcohólicas , Modelos Psicológicos , Investigación Cualitativa , Recurrencia , Humanos , Masculino , Femenino , Persona de Mediana Edad , Hepatopatías Alcohólicas/psicología , Abstinencia de Alcohol/psicología , Conocimientos, Actitudes y Práctica en Salud , Alcoholismo/psicología , Adulto , AncianoRESUMEN
Data visualizations can be effective and inclusive means for helping people understand health-related data. Yet numerous high-quality studies comparing data visualizations have yielded relatively little practical design guidance because of a lack of clarity about what communicators want their audience to accomplish. When conducting rigorous evaluations of communication (eg, applying the ISO 9186 method), describing the process simply as evaluating "comprehension" or "interpretation" of visualizations fails to do justice to the true range of outcomes being studied. We present newly developed taxonomies of outcome measures and tasks that are guiding a large-scale systematic review of the health numbers communication literature. Using these taxonomies allows a designer to determine whether a specific data presentation format or feature supports or inhibits the desired audience cognitions, feelings, or behaviors. We argue that taking a granular, outcomes-based approach to designing and evaluating information visualization research is essential to deriving practical, actionable knowledge from it.
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Visualización de Datos , Comunicación en Salud , Humanos , Objetivos , Comunicación , Evaluación de Resultado en la Atención de Salud , CogniciónRESUMEN
Importance: Despite guideline recommendations, clinicians do not systematically use prior screening or health history to guide colorectal cancer (CRC) screening decisions in older adults. Objective: To evaluate the effect of a personalized multilevel intervention on screening orders in older adults due for average-risk CRC screening. Design, Setting, and Participants: Interventional 2-group parallel unmasked cluster randomized clinical trial conducted from November 2015 to February 2019 at 2 US Department of Veterans Affairs (VA) facilities: 1 academic VA medical center and 1 of its connected outpatient clinics. Randomization at the primary care physician/clinician (PCP) level, stratified by study site and clinical full-time equivalency. Participants were 431 average-risk, screen-due US veterans aged 70 to 75 years attending a primary care visit. Data analysis was performed from August 2018 to August 2023. Intervention: The intervention group received a multilevel intervention including a decision-aid booklet with detailed information on screening benefits and harms, personalized for each participant based on age, sex, prior screening, and comorbidity. The control group received a multilevel intervention including a screening informational booklet. All participants received PCP education and system-level modifications to support personalized screening. Main Outcomes and Measures: The primary outcome was whether screening was ordered within 2 weeks of clinic visit. Secondary outcomes were concordance between screening orders and screening benefit and screening utilization within 6 months. Results: A total of 436 patients were consented, and 431 were analyzed across 67 PCPs. Patients had a mean (SD) age of 71.5 (1.7) years; 424 were male (98.4%); 374 were White (86.8%); 89 were college graduates (21.5%); and 351 (81.4%) had undergone prior screening. A total of 258 (59.9%) were randomized to intervention, and 173 (40.1%) to control. Screening orders were placed for 162 of 258 intervention patients (62.8%) vs 114 of 173 control patients (65.9%) (adjusted difference, -4.0 percentage points [pp]; 95% CI, -15.4 to 7.4 pp). In a prespecified interaction analysis, the proportion receiving orders was lower in the intervention group than in the control group for those in the lowest benefit quartile (59.4% vs 71.1%). In contrast, the proportion receiving orders was higher in the intervention group than in the control group for those in the highest benefit quartile (67.6% vs 52.2%) (interaction P = .049). Fewer intervention patients (106 of 256 [41.4%]) utilized screening overall at 6 months than controls (96 of 173 [55.9%]) (adjusted difference, -13.4 pp; 95% CI, -25.3 to -1.6 pp). Conclusions and Relevance: In this cluster randomized clinical trial, patients who were presented with personalized information about screening benefits and harms in the context of a multilevel intervention were more likely to receive screening orders concordant with benefit and were less likely to utilize screening. Trial Registration: ClinicalTrials.gov Identifier: NCT02027545.
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Neoplasias Colorrectales , Detección Precoz del Cáncer , Humanos , Masculino , Anciano , Femenino , Empleo , Neoplasias Colorrectales/diagnóstico , Instituciones de Atención Ambulatoria , Tamizaje MasivoRESUMEN
BACKGROUND: Missed appointments ("no-shows") are a persistent and costly problem in healthcare. Appointment reminders are widely used but usually do not include messages specifically designed to nudge patients to attend appointments. OBJECTIVE: To determine the effect of incorporating nudges into appointment reminder letters on measures of appointment attendance. DESIGN: Cluster randomized controlled pragmatic trial. PATIENTS: There were 27,540 patients with 49,598 primary care appointments, and 9420 patients with 38,945 mental health appointments, between October 15, 2020, and October 14, 2021, at one VA medical center and its satellite clinics that were eligible for analysis. INTERVENTIONS: Primary care (n = 231) and mental health (n = 215) providers were randomized to one of five study arms (four nudge arms and usual care as a control) using equal allocation. The nudge arms included varying combinations of brief messages developed with veteran input and based on concepts in behavioral science, including social norms, specific behavioral instructions, and consequences of missing appointments. MAIN MEASURES: Primary and secondary outcomes were missed appointments and canceled appointments, respectively. STATISTICAL ANALYSIS: Results are based on logistic regression models adjusting for demographic and clinical characteristics, and clustering for clinics and patients. KEY RESULTS: Missed appointment rates in study arms ranged from 10.5 to 12.1% in primary care clinics and 18.0 to 21.9% in mental health clinics. There was no effect of nudges on missed appointment rate in primary care (OR = 1.14, 95%CI = 0.96-1.36, p = 0.15) or mental health (OR = 1.20, 95%CI = 0.90-1.60, p = 0.21) clinics, when comparing the nudge arms to the control arm. When comparing individual nudge arms, no differences in missed appointment rates nor cancellation rates were observed. CONCLUSIONS: Appointment reminder letters incorporating brief behavioral nudges were ineffective in improving appointment attendance in VA primary care or mental health clinics. More complex or intensive interventions may be necessary to significantly reduce missed appointments below their current rates. TRIAL NUMBER: ClinicalTrials.gov, Trial number NCT03850431.
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Salud Mental , Sistemas Recordatorios , Humanos , Cooperación del Paciente , Citas y Horarios , Atención Primaria de SaludRESUMEN
Depression is often framed as a disease or dysfunctional syndrome, yet this framing has unintended negative consequences including increased stigma. Here, we consider an alternative messaging framework - that depression serves an adaptive function. We describe the historical development of popular messages about depression and draw from the fields of evolutionary psychiatry and social cognition to describe the alternative framework that depression is a "signal" that serves a purpose. We then present data from a pre-registered, online randomized-controlled study in which participants with self-reported depression histories viewed a series of videos that explained depression as a "disease like any other" with known biopsychosocial risk factors (BPS condition), or as a signal that serves an adaptive function (Signal condition). In the entire sample (N = 877), three of the six hypotheses were supported: The Signal condition led to less self-stigma, greater offset efficacy, and more adaptive beliefs about depression. Exploratory analyses revealed these Signal effects were stronger among females (N = 553), who also showed a greater growth mindset of depression after the Signal explanation. Results suggest that framing depression as an adaptive signal can benefit patients and avoid harmful consequences of popular etiological presentations. We conclude that alternative framings of depression are worthy of further study.
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Depresión , Estigma Social , Femenino , Humanos , Depresión/epidemiología , Depresión/etiología , Depresión/psicología , Proyectos de InvestigaciónRESUMEN
While cancer screening guidelines increasingly recommend incorporating life expectancy estimates to inform screening decisions for older adults, little is known about how this happens in practice. This review summarizes current knowledge about primary care clinician and older adult (65+) perspectives about use of life expectancy to guide cancer screening decisions. Clinicians report operational barriers, uncertainty, and hesitation around use of life expectancy in screening decisions. They recognize it may help them more accurately weigh benefits and harms but are unsure how to estimate life expectancy for individual patients. Older adults face conceptual barriers and are generally unconvinced of the benefits of considering their life expectancy when making screening decisions. Life expectancy will always be a difficult topic for clinicians and patients, but there are advantages to incorporating it in cancer screening decisions. We highlight key takeaways from both clinician and older adult perspectives to guide future research.
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Detección Precoz del Cáncer , Neoplasias , Humanos , Anciano , Toma de Decisiones , Tamizaje Masivo , Esperanza de Vida , Neoplasias/diagnóstico , Neoplasias/prevención & controlRESUMEN
BACKGROUND: Although COVID-19 vaccinations have been available to hospital workers in the U.S. since December 2020, coverage is far from universal, even in groups with patient contact. The aim of this study was to describe COVID-19-related experiences at work and in the personal lives of nurses, allied health workers, and non-clinical staff with patient contact, and to assess whether these experiences relate to COVID-19 vaccination. METHODS: Health care workers at a large Midwestern hospital in the U.S. were contacted to participate in an online cross-sectional survey during February 2021. A logistic regression model was used to estimate odds ratios (OR) for vaccination by different experiences, and we assessed mediation through models that also included measures of risk perceptions. RESULTS: Among 366 nurse practitioners / nurse midwives / physician assistant, 1,698 nurses, 1,798 allied health professionals, and 1,307 non-clinical staff with patient contact, the proportions who had received or intended to receive a COVID-19 vaccination were 94 %, 87 %, 82 %, and 88 %, respectively. Working and being physically close to COVID-19 patients was not significantly associated with vaccine intent. Vaccination intent was significantly lower among those with a previous COVID-19 diagnosis vs not (OR = 0.33, 95 % CI: 0.27, 0.40) and higher for those who knew close family members of friends hospitalized or died of COVID-19 (OR = 1.33, 95 % CI: 1.10, 1.60). CONCLUSION: Even when COVID-19 vaccination was available in February 2021, a substantial minority of hospital workers with patient contact did not intend to be vaccinated. Moreover, their experiences working close to COVID-19 patients were not significantly related to vaccination intent. Instead, personal experiences with family members and friends were associated with vaccination intent through changes in risk perceptions. Interventions to increase uptake among hospital workers should emphasize protection of close family members or friends and the severity of COVID-19.
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Vacunas contra la COVID-19 , COVID-19 , Humanos , Vacunas contra la COVID-19/uso terapéutico , Prueba de COVID-19 , Estudios Transversales , COVID-19/prevención & control , Personal de Hospital , Personal de Salud , Vacunación , HospitalesRESUMEN
Importance: COVID-19 vaccination rates in the US remain below optimal levels. Patient preferences for different attributes of vaccine products and the vaccination experience can be important in determining vaccine uptake decisions. Objective: To assess preferences for attributes of adult and pediatric COVID-19 vaccination among US adults. Design, Setting, and Participants: An online survey of a national panel of 1040 US adults was conducted in May and June 2021. A discrete choice analysis was used to measure the relative value of each attribute in the decision to choose a COVID-19 vaccination option for adults or children. Six attributes were used to described hypothetical vaccination options: vaccine effectiveness, mild side effects, rare adverse events, number of doses, time required for vaccination, and regulatory approval. Respondents chose between hypothetical vaccination profiles or no vaccination. Additional survey questions asked about vaccination beliefs, COVID-19 illness experience, COVID-19 risk factors, vaccination status, and opinions about the risk of COVID-19. Exposures: Respondents chose which vaccine profile they would prefer to receive for themselves (or no vaccination). Respondents then considered an identical set of profiles for a hypothetical child aged 0 to 17 years. Main Outcomes and Measures: Relative value of vaccination-related attributes were estimated using Bayesian logit regression. Preference profiles for subgroups were estimated using latent class analyses. Results: A total of 1040 adults (610 [59%] female; 379 participants [36%] with an age of 55 years and older years) responded to the survey. When asked about vaccination choices for themselves, participants indicated that vaccine effectiveness (95% vs 60%) was a significant attribute (ß, 9.59 [95% CrI, 9.20-10.00] vs ß, 0.41 [95% CrI, 0-0.80]). Respondents also preferred fewer rare adverse events (ß, 6.35 [95% CrI, 5.74-6.86), fewer mild side effects (ß, 5.49; 95% CrI, 5.12-5.87), 1 dose (ß, 5.41; 95% CrI, 5.04-5.78), FDA approval (ß, 6.01; 95% CrI, 5.64-6.41), and shorter waiting times (ß, 5.67; 95% CrI, 4.87-6.48). Results were very similar when framing the question as adult or child vaccination, with slightly stronger preference for fewer rare adverse events for children. Latent class analysis revealed 4 groups of respondents: (1) individuals sensitive to safety and regulatory status, (2) individuals sensitive to convenience, (3) individuals who carefully considered all attributes in making their choices, and (4) individuals who rejected the vaccine. Conclusions and Relevance: In this survey study of US adults, the identification of 4 distinct preference groups provides new information to guide communications to support vaccine decision making. In particular, the group that prioritize convenience (less time required for vaccination and fewer doses) may present an opportunity to create actionable strategies to increase vaccination uptake for both adult and pediatric populations.
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COVID-19 , Vacunas , Adulto , Humanos , Niño , Femenino , Masculino , Vacunas contra la COVID-19/uso terapéutico , Teorema de Bayes , COVID-19/epidemiología , COVID-19/prevención & control , VacunaciónRESUMEN
PURPOSE: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances. METHODS: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database. RESULTS: Interviewees used existing databases to avoid burdens of primary data collection, which was described as expensive and time-consuming. They highlighted ease of access as the most important selection factor, integrating concepts of familiarity and efficiency. Data features, such as size and available phenotype, were also important. Demographic diversity was not originally cited by any interviewee as a pivotal factor; when probed, most stated that the option to consider diversity in database selection was limited. Database features, including integrity, harmonization, and storage were also described as key components of efficient use. CONCLUSION: There is a growing market and competition between genetic data stewards. Data need to be accessible, harmonized, and administratively supported for their existence to be translated into use and, in turn, result in scientific advancements across diverse communities.
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Difusión de la Información , Investigadores , HumanosRESUMEN
Communicating health-related probabilities to patients and the public presents challenges, although multiple studies have demonstrated that we can promote comprehension and appropriate application of numbers by matching presentation formats (e.g., percentage, bar charts, icon arrays) to communication goal (e.g., improving recall, decreasing worry, taking action). We used this literature to create goal-driven, evidence-based guidance to support health communicators in conveying probabilities. We then conducted semi-structured interviews with 39 health communicators to understand: communicators' goals for expressing probabilities, formats they choose to convey probabilities, and perceptions of prototypes of our "communicating numbers clearly" guidance. We found that communicators struggled to articulate granular goals for their communication, impeding their ability to select appropriate guidance. Future work should consider how best to support health communicators in selecting granular, differentiable goals to support broadly comprehensible information design.
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Comunicación en Salud , Humanos , Evaluación de Necesidades , Comunicación , ProbabilidadRESUMEN
BACKGROUND: Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision. METHODS: To ensure that the intervention reflects parents' needs (rather than experts' opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (n = 10) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (n = 9 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet. RESULTS: Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child's quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone. CONCLUSIONS: A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids).
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Calidad de Vida , Diseño Centrado en el Usuario , Niño , Comunicación , Toma de Decisiones , Humanos , Padres , TraqueostomíaRESUMEN
INTRODUCTION: Retaining leftover prescription opioids poses the risks of diversion, misuse, overdose, and death for youth and other family members. This study examined whether a new educational program would enhance risk perceptions and disposal intentions among parents and decrease their retention of leftover prescription opioids. STUDY DESIGN: This study is an RCT (NCT03287622). SETTING/PARTICIPANTS: A total of 648 parents whose children were prescribed opioid analgesics were recruited from a Midwestern, academic pediatric hospital between 2017 and 2019. Parents were randomized to receive routine information (control) with or without Scenario-Tailored Opioid Messaging Program intervention. INTERVENTION: The intervention provided opioid risk and mitigation advice using interactive decisional feedback. MAIN OUTCOME MEASURES: The main outcome measures were parents' perceptions of the riskiness of keeping/sharing opioids and child misuse measured at baseline, Days 3 and 14, their intention to dispose of leftover opioids, and their final retention decisions after the child's use (at or around Day 14). RESULTS: Perceived riskiness of child misuse and keeping/sharing opioids increased from baseline through Day 14 only for parents in the intervention group (p≤0.006). However, there were no significant differences in risk perceptions between groups and no intervention effect on disposal intentions at either follow-up. Despite these findings, the intervention reduced the likelihood of parents' opioid retention when adjusted for important parent and child covariates (AOR=0.48; 95% CI=0.25, 0.93; p=0.028). Parents who reported past opioid misuse also showed higher retention behavior (AOR=4.78; 95% CI=2.05, 11.10; p<0.001). CONCLUSIONS: A scenario-specific educational intervention emphasizing the potential risks that leftover opioids pose to children and that provided risk mitigation advice decreased parents' retention of their child's leftover opioid medication. Removing leftover prescription drugs from homes with children may be an important step to reducing diversion, accidental poisoning, and misuse among youth. TRIAL REGISTRATION: This study is registered at www. CLINICALTRIALS: gov NCT03287622.
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Sobredosis de Droga , Trastornos Relacionados con Opioides , Adolescente , Analgésicos Opioides/uso terapéutico , Niño , Sobredosis de Droga/tratamiento farmacológico , Humanos , Trastornos Relacionados con Opioides/tratamiento farmacológico , Trastornos Relacionados con Opioides/prevención & control , Padres , PrescripcionesRESUMEN
Recent trials suggest that aspirin for primary prevention may do more harm than good for some, including adults over 70 years of age. We sought to assess how primary care providers (PCPs) use aspirin for the primary prevention in older patients and to identify barriers to use according to recent guidelines, which recommend against routine use in patients over age 70. We surveyed PCPs about whether they would recommend aspirin in clinical vignettes of a 75-year-old patient with a 10-year atherosclerotic cardiovascular disease risk of 25%. We also queried perceived difficulty following guideline recommendations, as well as perceived barriers and facilitators. We obtained responses from 372 PCPs (47.9% response). In the patient vignette, 45.4% of clinicians recommended aspirin use, which did not vary by whether the patient was using aspirin initially (p = 0.21); 41.7% believed aspirin was beneficial. Perceived barriers to guideline-based aspirin use included concern about patients being upset (41.6%), possible malpractice claims (25.0%), and not having a strategy for discussing aspirin use (24.5%). The estimated adjusted probability of rating the guideline as "hard to follow" was higher in clinicians who believed aspirin was beneficial (29.4% vs. 8.0%; p < 0.001) and who worried the patient would be upset if told to stop aspirin (26.7% vs. 12.5%; p = 0.001). Internists vary considerably in their recommendations for aspirin use for primary prevention in older patients. A high proportion of PCPs continue to believe aspirin is beneficial in this setting. These results can inform de-implementation efforts to optimize evidence-based aspirin use.
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Aspirina , Médicos , Humanos , Anciano , Anciano de 80 o más Años , Aspirina/uso terapéutico , Actitud del Personal de Salud , Encuestas y CuestionariosRESUMEN
Many people, especially those with low numeracy, are known to have difficulty interpreting and applying quantitative information to health decisions. These difficulties have resulted in a rich body of research about better ways to communicate numbers. Synthesizing this body of research into evidence-based guidance, however, is complicated by inconsistencies in research terminology and researcher goals. In this article, we introduce three taxonomies intended to systematize terminology in the literature, derived from an ongoing systematic literature review. The first taxonomy provides a systematic nomenclature for the outcome measures assessed in the studies, including perceptions, decisions, and actions. The second taxonomy is a nomenclature for the data formats assessed, including numbers (and different formats for numbers) and graphics. The third taxonomy describes the quantitative concepts being conveyed, from the simplest (a single value at a single point in time) to more complex ones (including a risk-benefit trade-off and a trend over time). Finally, we demonstrate how these three taxonomies can be used to resolve ambiguities and apparent contradictions in the literature.