Implementing and evaluating shared decision making in oncology practice.

Engaging individuals with cancer in decision making about their treatments has received increased attention; shared decision making (SDM) has become a hallmark of patient-centered care. Although physicians indicate substantial interest in SDM, implementing SDM in cancer care is often complex; high levels of uncertainty may exist, and health care providers must help patients understand the potential risks versus benefits of different treatment options. However, patients who are more engaged in their health care decision making are more likely to experience confidence in and satisfaction with treatment decisions and increased trust in their providers. To implement SDM in oncology practice, physicians and other health care providers need to understand the components of SDM and the approaches to supporting and facilitating this process as part of cancer care. This review summarizes recent information regarding patient and physician factors that influence SDM for cancer care, outcomes resulting from successful SDM, and strategies for implementing SDM in oncology practice. We present a conceptual model illustrating the components of SDM in cancer care and provide recommendations for facilitating SDM in oncology practice.

Predictors of willingness to get a COVID-19 vaccine in the U.S.

BACKGROUND: As COVID-19 vaccine distribution efforts continue, public health workers can strategize about vaccine promotion in an effort to increase willingness among those who may be hesitant. METHODS: In April 2020, we surveyed a national probability sample of 2279 U.S. adults using an online panel recruited through address-based sampling. Households received a computer and internet access if needed to participate in the panel. Participants were invited via e-mail and answered online survey questions about their willingness to get a novel coronavirus vaccine when one became available. The survey was completed in English and Spanish. We report weighted percentages. RESULTS: Most respondents were willing to get the vaccine for themselves (75%) or their children (73%). Notably, Black respondents were less willing than White respondents (47% vs. 79%, p < 0.001), while Hispanic respondents were more willing than White respondents (80% vs. 75%, p < 0.003). Females were less likely than makes (72% vs. 79%, p < 0.001). Those without insurance were less willing than the insured (47% vs. 78%, p < 0.001). Willingness to vaccinate was higher for those age 65 and older than for some younger age groups (85% for those 65 and older vs. 75% for those 50-64, p < 0.017; 72% for those 35-49, p < 0.002; 70% for those 25-34, p = NS and 75% for ages 18-24, p = NS), but other groups at increased risk because of underlying medical conditions or morbid obesity were not more willing to get vaccinated than their lower risk counterparts. CONCLUSIONS: Most Americans were willing to get a COVID-19 vaccine, but several vulnerable populations reported low willingness. Public health efforts should address these gaps as national implementation efforts continue.

Mental Models of Infectious Diseases and Public Understanding of COVID-19 Prevention.

The emergence of viral diseases such as Ebola virus disease, Zika virus disease, and the coronavirus disease (COVID-19) has posed considerable challenges to health care systems around the world. Public health strategy to address emerging infectious diseases has depended in part on human behavior change and yet the perceptions and knowledge motivating that behavior have been at times inconsistent with the latest consensus of peer-reviewed science. Part of that disjuncture likely involves the existence and persistence of past ideas about other diseases. To forecast and prepare for future epidemic and pandemic response, we need to better understand how people approach emerging infectious diseases as objects of public opinion during the periods when such diseases first become salient at a population level. In this essay, we explore two examples of how existing mental models of past infectious diseases appear to have conditioned and constrained public response to novel viral diseases. We review previously reported experiences related to Zika virus in Central America and discuss public opinion data collected in the early months of the COVID-19 pandemic. In the case of Zika virus disease, we assess how thinking about earlier mosquito-borne disease seems to have affected public consideration of the virus in Guatemala. In the case of COVID-19, we assess how previous vaccination behavior for a different disease is associated with intention to obtain vaccination for COVID-19 in the future.

Health literacy measurement: an inventory and descriptive summary of 51 instruments.

This article aimed to provide a descriptive review of the psychometric properties and conceptual dimensions of published health literacy measurement tools. PsycINFO and PubMed search from 1999 through 2013, review of the grey literature, and an environmental scan was conducted to identify health literacy measurement tools. For each tool, we evaluated the conceptual dimensions assessed, test parameters, and psychometric properties. Of the 51 tools identified, 26 measured general health literacy, and 15 were disease or content specific, and 10 aimed at specific populations. Most tools are performance based, require in-person administration, and are exclusively available in a pencil and paper testing mode. The tools assess 0 (proxy measure) to 9 of the 11 defined dimensions of health literacy. Reported administration times vary, from less than 1 to 60 minutes. Validation procedures for most of the tools are limited by inadequate power to ensure reliability across subgroups (i.e., race, age, ethnicity, and gender). The health literacy measurement tools currently available generally represent a narrow set of conceptual dimensions with limited modes of administration. Most of the tools lack information on key psychometric properties. Significant work is needed to establish important aspects of the construct, convergent, and predictive validity for many tools. As researchers develop new measures, inclusion of a full range of conceptual dimensions of health literacy, more representative sampling for testing, and additional modes of administration will allow a more refined and flexible approach to research in this field.

Preferences for patient medication information: what do patients want?

This study investigated respondent preferences on how best to display patient medication information (PMI) that accompanies prescription medications to promote comprehension and appropriate usage. The authors identified 30 individuals diagnosed with select immune disorders, 30 with other chronic diseases, and 30 from the general public and had them review one of two PMI handouts that varied by format, organization, and content. The authors explored preferences for the PMI handout using one-on-one interviews. The authors analyzed the qualitative data to identify relevant themes and patterns using NVivo9 qualitative software. The majority of respondents noted that the formats of the two PMI handouts were more informative than those they currently receive from the pharmacist, with a preference for the 2-column, segmented design. However, respondent PMI preferences varied by age, education, and health status. Patients need simpler and more concise drug information to make better decisions about their health. Current PMI handouts are dense and complex, which can be confusing and not reader friendly. To improve PMI understandability and usefulness, the U.S. Food and Drug Administration is working with stakeholders, consumer advocates, and academics. Findings from this study may help inform future development of more user-friendly PMI.

Design of a Multicenter Randomized Controlled Trial comparing the effectiveness of shared decision making versus motivational interviewing plus cognitive behavioral therapy for voluntary opioid tapering: The INSPIRE study protocol.

BACKGROUND: This paper describes the design and protocol of a pragmatic, randomized trial to evaluate the comparative effectiveness of shared decision making versus motivational interviewing plus cognitive behavioral therapy for chronic pain for the voluntary tapering of opioid dose in adults with chronic noncancer pain. Integrated Services for Pain: Interventions to Reduce Pain Effectively (INSPIRE) is a multicenter, randomized trial conducted at three academic health centers in the southeastern United States. Participants are adults receiving long-term opioid therapy of at least 20 morphine milligram equivalents daily for chronic noncancer pain. METHODS: Participants were randomized to either the shared decision-making intervention or the motivational interviewing session and cognitive behavioral therapy for chronic pain intervention. All participants also received guideline-concordant care supporting opioid pharmacotherapy. The primary outcome was change from baseline in average daily prescribed opioid dose at 12 months, using prescribing data from electronic health records. Secondary outcomes were Patient-Reported Outcomes Measurement Information System Pain Interference and Physical Function at 12 months. CONCLUSION: This trial evaluates the comparative effectiveness of shared decision making versus motivational interviewing plus cognitive behavioral therapy for chronic pain for the voluntary tapering of opioid dose in adults with chronic noncancer pain. Results from this study can guide clinicians, researchers, and policymakers as they seek to reduce opioid prescribing and improve management of chronic pain. CLINICAL TRIALS REGISTRATION: ClinicalTrials.gov Identifier: NCT03454555 (https://clinicaltrials.gov/ct2/show/record/NCT03454555). Participant enrollment began on June 26, 2019.

The Health Literacy Skills Instrument: a 10-item short form.

The 25-item Health Literacy Skills Instrument (HLSI) was designed to measure the ability to read and understand text and locate and interpret information in documents (print literacy), to use quantitative information (numeracy), to listen effectively (oral literacy), and to seek information through the Internet (navigation). It is a publically available measure that can be used in surveillance activities, to evaluate interventions, and in research examining the relation between health literacy and health outcomes. The authors developed a 10-item, short form (SF) version of the HLSI, the HLSI-SF, using data gathered for the development of the longer form. The authors selected 10 items for inclusion in the HLSI-SF and conducted a confirmatory factor analysis and item response theory analyses, then computed Cronbach's alpha. The HLSI-SF demonstrated acceptable internal consistency reliability (α = .70) for use in group-level comparisons. The HSLI-SF has many of the same advantages of the longer version with the additional benefit of taking only approximately 5 to 10 min to administer. The HLSI-SF offers researchers and practitioners a valid and reliable measure of health literacy skills.

Americans' Attitudes Toward COVID-19 Preventive and Mitigation Behaviors and Implications for Public Health Communication.

PURPOSE: Identifying drivers of behavior is essential to develop effective messaging around COVID-19 prevention and mitigation. Our study assessed for behavioral antecedents of social distancing, wearing face coverings, and sheltering in place during the onset of the COVID-19 pandemic. Although ours is an early assessment, understanding motivation for behavior will remain critical as U.S. vaccination uptake has stalled and variants continue to pose a health threat. DESIGN: Cross-sectional survey; Setting: Online assessments in April 10-13 and 17-20, 2020; Subjects: 2,279 U.S. adults identified through a national, probability-based web panel (34% response rate). Measures: self-reported behavior, perceived effectiveness and risk, worry, social norms, and knowledge. ANALYSIS: Multivariable regression analyses. RESULTS: Most Americans reported social distancing (91%) and sheltering in place (86%). Just over half reported wearing face coverings (51%), whereas more (77%) said they intended to do so. Perceived effectiveness of the behavior was consistently associated with each outcome (OR = 2.34, 1.40, 2.11, respectively; all P < .01). Perceptions about the extent to which others should comply with behavior (social norms) were strongly associated with intentions to wear a face covering only (OR = 6.30, 95% CI 4.34-9.15; P < .001) and worry about getting COVID-19 was associated with sheltering in place and social distancing (OR = 2.63, 95% CI 1.15-5.00; 4.91, 95% CI 1.66, 14.50, respectively; all P < .05). CONCLUSION: Behavioral constructs were strongly associated with COVID-19 preventive and mitigation behaviors and have implications for communication.

Gaps in Knowledge About COVID-19 Among US Residents Early in the Outbreak.

OBJECTIVES: The novel coronavirus disease 2019 (COVID-19) resulting from severe acute respiratory syndrome coronavirus 2 began to affect the United States in early 2020. This study aimed to assess the US public's initial understanding about the disease and virus to inform public health communication efforts. METHODS: We conducted a survey of US households from February 28 through March 2, 2020, using a probability-based web-panel survey of 1021 US residents. To assess knowledge about COVID-19, we asked respondents a series of 16 true/false questions. We conducted descriptive statistics and linear regression analyses to examine differences in knowledge scores based on demographic and background characteristics. RESULTS: Knowledge about COVID-19 and the virus was relatively low overall at the beginning of the outbreak, with average scores of 62% on a 16-item knowledge index (ie, answers for 6 of the 16 questions were incorrect or unknown). Knowledge was especially low among people who had low education and income levels, were unemployed, were Hispanic, were non-Hispanic Black, were aged 18-24 and 35-49, indicated having "other" health insurance, and had limited exposure to information about the pandemic. Non-Hispanic Black respondents were less knowledgeable about COVID-19 and the virus at every education level compared with non-Hispanic White respondents at higher education levels. Non-Hispanic Black respondents with

Communication message strategies for increasing knowledge about prostate cancer screening.

BACKGROUND: This community-based intervention study examined the effects of 2 different message strategies for presenting information about the prostate specific antigen (PSA) test. METHODS: A quasi-experimental longitudinal design with 2 intervention and 1 control group. RESULTS: Knowledge increased significantly among participants who received either version of the intervention message and remained elevated at 12 months. Presenting information in the context of other men's health issues was associated with greater increases in knowledge relative to PSA only. CONCLUSIONS: Community-based interventions can increase knowledge about prostate cancer screening. Clinicians need to take careful account of what their patients understand and correct misperceptions.

Supporting informed clinical trial decisions: Results from a randomized controlled trial evaluating a digital decision support tool for those with intellectual disability.

BACKGROUND: Informed consent requires that individuals understand the nature of the study, risks and benefits of participation. Individuals with intellectual disabilities (ID) have cognitive and adaptive impairments that may affect their ability to provide informed consent. New treatments and clinical trials for fragile X syndrome, the most commonly known inherited cause of ID, necessitate the development of methods to improve the informed consent process. The goal of this study was to compare the efficacy of a digital decision support tool with that of standard practice for informed consent and to examine whether the tool can improve decisional capacity for higher functioning individuals. METHODS: Participants (N = 89; mean age = 21.2 years) were allocated to the experimental group (consenting information provided via the digital decision support tool), or the comparison group (information provided via standard practice). Participants were assessed on four aspects of decisional capacity (Understanding, Appreciating, Reasoning, and Expressing a choice). We used regression analyses to test the impact of the tool on each outcome, repeating the analyses on the higher functioning subsample. RESULTS: No differences existed in any domain of decisional capacity for the sample in full. However, participants in the higher IQ subsample who used the tool scored better on Understanding after adjustment (ß = 0.25, p = 0.04), but not on Appreciating or Reasoning. No differences by experimental group existed in the decision to join the hypothetical trial for the full sample or higher functioning subsample. CONCLUSIONS: A decision support tool shows promise for individuals with fragile X syndrome with higher cognitive abilities. Future studies should examine the level of cognitive ability needed for sufficient understanding, whether these findings can be translated to other clinical populations, and the impact of the tool in larger trials and on trial retention.

Impact of messages about scientific uncertainty on risk perceptions and intentions to use electronic vaping products.

BACKGROUND: The science surrounding e-cigarettes and other electronic vaping products (EVPs) is rapidly evolving, and the health effects of vaping are unclear. Little research has explored how individuals respond to information acknowledging scientific uncertainty. The aim of the present study was to understand the impact of messages about scientific uncertainty regarding the health effects of vaping on risk perceptions and behavioral intentions. METHODS: Adults in an online experiment (n = 2508) were randomly exposed to view either a control message (a short factual statement about EVPs) or an uncertainty message (the control message plus additional information describing why EVP-related research is limited or inconclusive). Participants rated the risks of vaping and their intentions to try or stop vaping. RESULTS: Individuals who viewed the uncertainty message rated vaping as less risky than those who viewed the control message. Message exposure did not impact intentions to try vaping soon or intentions to stop vaping in the next 6 months. CONCLUSIONS: Acknowledging scientific uncertainty made EVP use seem less risky. Future research should explore possible drivers of this response, such as deeper message processing or emotional reactions. Researchers and practitioners designing public health campaigns about vaping might consider a cautious approach to presenting information about scientific uncertainty.

Promoting prostate-specific antigen informed decision-making. Evaluating two community-level interventions.

BACKGROUND: Most medical associations recommend that patients make informed decisions about whether to be screened for prostate cancer with the prostate-specific antigen (PSA) test. Studies assessing how to promote PSA informed decision-making (IDM) have been conducted almost exclusively in healthcare settings; there is a need for similar research in community settings. METHODS: This paper describes the results of a 5-year study (2002--2007) in which two community-level interventions were developed, implemented, and evaluated in matched upper- and lower-SES comparison communities in Greensboro and Wilmington, North Carolina. Both interventions promoted PSA informed decision-making. One intervention (PSA-Only) consisted of educational information about prostate cancer and the PSA test, and the other (Men's Health) included additional information about recognizing and preventing heart attack, stroke, and colon cancer. Structured survey, semistructured interview, and structured observational data were combined to compare participating community residents' pre/post changes in knowledge, intentions, and behaviors related to PSA IDM. RESULTS: The community-level interventions successfully engaged community participants in discussions, educated individuals, encouraged deliberation of information, and facilitated PSA test discussions with physicians. Men who participated in the PSA-Only educational sessions were more likely than those who attended the Men's Health educational sessions to discuss the PSA test with their physician (p=0.037). CONCLUSIONS: When prospective SES-related confounding factors are matched across comparison communities, PSA IDM interventions can be shown to promote IDM. Framing the PSA test decision relative to less-ambiguous screening decisions does not appear to increase the likelihood of PSA IDM.

Development and validation of an instrument to measure resources and support for chronic illness self-management: a model using diabetes.

PURPOSE: Few comprehensive and practical instruments exist to measure the receipt of self-management support for chronic illness. An instrument was developed to measure resources and support for self-management (RSSM) for the survey component of the evaluation of the Robert Wood Johnson Foundation's Diabetes Initiative. It includes items to measure an ecological range of RSSM. This article describes the development and validation of the instrument, focusing on individuals' reported access to RSSM from providers and from nonclinical, social, and community sources. METHODS: Cross-sectional analyses of the second wave of a survey of participants in the Diabetes Initiative (68% response rate, n = 957) were used. RESULTS: Confirmatory factor analyses supported grouping the 17 items into 5 subscales, measuring key aspects of RSSM: individualized assessment, collaborative goal setting, enhancing skills, ongoing follow-up and support, and community resources (comparative fit index = 0.97, Tucker-Lewis fit index = 0.99, and root means square error of approximation = 0.06). The overall scale and 5 subscales were internally consistent (Cronbach alpha >or= .70) and were significantly, positively related to diabetes self-management behaviors, supporting their construct validity. CONCLUSIONS: This instrument shows promise for measuring RSSM. Although it was developed for diabetes programs, its ecological orientation and link to the broad framework of chronic care suggest broader application.