BackgroundIn 2005, the International Patient Decision Aids Standards Collaboration identified twelve quality dimensions to guide assessment of patient decision aids. One dimension—the delivery of patient decision aids on the Internet—is relevant when the Internet is used to provide some or all components of a patient decision aid. Building on the original background chapter, this paper provides an updated definition for this dimension, outlines a theoretical rationale, describes current evidence, and discusses emerging research areas.MethodsAn international, multidisciplinary panel of authors examined the relevant theoretical literature and empirical evidence through 2012.ResultsThe updated definition distinguishes Internet-delivery of patient decision aids from online health information and clinical practice guidelines. Theories in cognitive psychology, decision psychology, communication, and education support the value of Internet features for providing interactive information and deliberative support. Dissemination and implementation theories support Internet-delivery for providing the right information (rapidly updated), to the right person (tailored), at the right time (the appropriate point in the decision making process). Additional efforts are needed to integrate the theoretical rationale and empirical evidence from health technology perspectives, such as consumer health informatics, user experience design, and human-computer interaction.Despite Internet usage ranging from 74% to 85% in developed countries and 80% of users searching for health information, it is unknown how many individuals specifically seek patient decision aids on the Internet. Among the 86 randomized controlled trials in the 2011 Cochrane Collaboration’s review of patient decision aids, only four studies focused on Internet-delivery. Given the limited number of published studies, this paper particularly focused on identifying gaps in the empirical evidence base and identifying emerging areas of research.ConclusionsAs of 2012, the updated theoretical rationale and emerging evidence suggest potential benefits to delivering patient decision aids on the Internet. However, additional research is needed to identify best practices and quality metrics for Internet-based development, evaluation, and dissemination, particularly in the areas of interactivity, multimedia components, socially-generated information, and implementation strategies.
Objective New clinical guidelines endorse the use of low-dose computed tomography (LDCT) for lung cancer screening among selected heavy smokers while recommending patients be counseled about the potential benefits and harms. We developed and field tested a brief, video-based patient decision aid about lung cancer screening. Methods Smokers in a cancer center tobacco treatment program aged 45 to 75 years viewed the video online between November 2011 and September 2012. Acceptability, knowledge, and clarity of values related to the decision were assessed. Results Fifty-two patients completed the study (mean age=58.5 years; mean duration smoking=34.8 years). Acceptability of the aid was high. Most patients (78.8%) indicated greater interest in screening after viewing the aid. Knowledge about lung cancer screening increased significantly as a result of viewing the aid (25.5% of questions answered correctly before the aid, and 74.8% after; P<.01) although understanding of screening eligibility remained poor. Patients reported being clear about which benefits and harms of screening mattered most to them (94.1% and 86.5%, respectively). Conclusions Patients have high information needs related to lung cancer screening. A video-based decision aid may be helpful in promoting informed decision-making, but its impact on lung cancer screening decisions needs to be explored.
Context Decision aids (DAs) prepare patients to make decisions about healthcare options consistent with their preferences. Helping patients choose among available options for colorectal cancer (CRC) screening is important because rates are lower than screening for other cancers. This systematic review describes studies evaluating patient DAs for CRC screening in average-risk adults and their impact on knowledge, screening intentions, and uptake. Evidence acquisition Sources included Ovid MEDLINE, Elsevier EMBASE, EBSCO CINAHL Plus, Ovid PsycINFO through July 21, 2015, pertinent reference lists, and Cochrane review of patient DAs. Reviewers independently selected studies that quantitatively evaluated a DA compared to one or more conditions or within a pre–post evaluation. Using a standardized form, reviewers independently extracted study characteristics, interventions, comparators, and outcomes. Analysis was conducted in August 2015. Evidence synthesis Twenty-three articles representing 21 trials including 11,900 subjects were eligible. Patients exposed to a DA showed greater knowledge than those exposed to a control condition (mean difference [MD], 18.3 of 100; 95% CI=15.5, 21.1), were more likely to be interested in screening (pooled relative risk [RR], 1.5; 95% CI=1.2, 2.0), and more likely to be screened (pooled RR, 1.3; 95% CI=1.1, 1.4). DA patients had greater knowledge than patients receiving general CRC screening information (pooled MD, 19.3 of 100; 95% CI=14.7, 23.8); however, there were no significant differences in screening interest or behavior. Conclusions DAs improve knowledge and interest in screening, and lead to increased screening over no information, but their impact on screening is similar to general CRC screening information.
BACKGROUND Colorectal cancer screening rates for African American patients remain sub-optimal. Patient decision aids designed with an entertainment-education approach have been shown to improve saliency and foster informed decision making. The purpose of this investigation was to assess whether an entertainment-education decision aid tailored for African American patients improved patients’ decision making, attitudes, intentions, or colorectal cancer screening behavior. METHODS Eighty-nine participants were randomized to view a patient decision aid video containing culturally-tailored information about colorectal cancer screening options and theory-based support in decision making, presented in an entertainment-education format, or an attention-control video about hypertension that contained similarly-detailed information. Participants met with their clinician and then completed follow-up questionnaires assessing their knowledge, decisional conflict, self-advocacy, attitudes, perceived social norms, and intentions. At three months, completion of screening was assessed by chart review. RESULTS Viewing the culturally-tailored decision aid significantly increased African American patients’ knowledge of colorectal cancer screening recommendations and options. It also significantly reduced their decisional conflict and improved their self-advocacy. No significant differences were observed in participants’ attitudes, norms, or intentions. At three months, 23% of all patients had completed a colonoscopy. CONCLUSIONS Designing targeted, engaging patient decision aids for groups that receive sub-optimal screening holds promise for improving patient decision making and self-advocacy, and additional research is warranted to investigate their effectiveness in clinical practices with sub-optimal screening rates, and on downstream behaviors such as repeat testing.
Objective To compare the effectiveness of two search methods in identifying studies that used the Control Preferences Scale (CPS), a healthcare decision-making instrument commonly used in clinical settings. Study Design & Setting We searched the literature using two methods: 1) keyword searching using variations of “control preferences scale” and 2) cited reference searching using two seminal CPS publications. We searched three bibliographic databases [PubMed, Scopus, Web of Science (WOS)] and one full-text database (Google Scholar). We report precision and sensitivity as measures of effectiveness. Results Keyword searches in bibliographic databases yielded high average precision (90%), but low average sensitivity (16%). PubMed was the most precise, followed closely by Scopus and WOS. The Google Scholar keyword search had low precision (54%) but provided the highest sensitivity (70%). Cited reference searches in all databases yielded moderate sensitivity (45–54%), but precision ranged from 35–75% with Scopus being the most precise. Conclusion Cited reference searches were more sensitive than keyword searches, making it a more comprehensive strategy to identify all studies that use a particular instrument. Keyword searches provide a quick way of finding some but not all relevant articles. Goals, time and resources should dictate the combination of which methods and databases are used.
BackgroundShared decision-making (SDM) is considered a key component of high quality cancer care and may be supported by patient decision aids (PtDAs). Many patients, however, face multiple social disadvantages that may influence their ability to fully participate in SDM or to use PtDAs; additionally, these social disadvantages are among the determinants of health associated with greater cancer risk, unwarranted variations in care and worse outcomes. The purpose of this systematic review is to describe the extent to which disadvantaged social groups in the United States (US) have been included in trials of cancer-related PtDAs and to highlight strategies, lessons learned and future opportunities for developing and evaluating PtDAs that are appropriate for disadvantaged populations.MethodsWe selected cancer-related US studies from the Cochrane 2014 review of PtDAs and added RCTs meeting Cochrane criteria from searches of PubMed, CINAHL, PsycINFO (January 2010 to December 2013); and reference lists. Two reviewers independently screened titles/abstracts; three reviewers independently screened full text articles, performed data extraction and assessed: 1) inclusion of participants based on seven indicators of social disadvantage (limited education; female gender; uninsured or Medicaid status; non-U.S. nativity; non-White race or Hispanic ethnicity; limited English proficiency; low-literacy), and 2) attention to social disadvantage in the development or evaluation of PtDAs.ResultsTwenty-three of 39 eligible RCTs included participants from at least one disadvantaged subgroup, most frequently racial/ethnic minorities or individuals with limited education and/or low-literacy. Seventeen studies discussed strategies and lessons learned in attending to the needs of disadvantaged social groups in PtDA development; 14 studies targeted disadvantaged groups or addressed subgroup differences in PtDA evaluation.ConclusionsThe diversity of the US population is represented in a majority of cancer-related PtDA RCTs, but fewer studies have tailored PtDAs to address the multiple social disadvantages that may impact patients’ participation in SDM. More detailed attention to the comprehensive range of social factors that determine cancer risk, variations in care and outcomes is needed in the development and evaluation of PtDAs for disadvantaged populations.Trial registrationRegistered 24 October 2014 in PROSPERO International prospective register of systematic reviews (CRD42014014470).Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0303-6) contains supplementary material, which is available to authorized users.
Introduction. Enhanced visual effects, like animation, have the potential to improve comprehension of probabilistic risk information, particularly for those with lower health literacy. We tested the effect of presentation format on comprehension of colorectal cancer (CRC) screening probabilities to identify optimal risk communication strategies. Methods. Participants from a community foodbank and a cancer prevention center were randomized to 1 of 3 CRC screening risk presentations. The presentations used identical content but varied in format: 1) video with animated pictographs, 2) video with static pictographs, and 3) audiobooklet with static pictographs. Participants completed pre- and postpresentation surveys. The primary outcome was knowledge of probability/risk information regarding CRC screening, calculated as total, verbatim, and gist scores. Results. In total, 187 participants completed the study and were included in this analysis. Median age was 58 years (interquartile range [IQR]: 14 years), most participants were women (63%), and almost half had a high school education or less (46%). Approximately one-quarter had inadequate health literacy (Short Test of Functional Health Literacy in Adults marginal/inadequate: 28%; Brief Health Literacy Screener low: 18%), and about half had low numeracy (Subjective Numeracy Scale low: 54%; Graphical Literacy Measure low: 50%). We found no significant differences in total, verbatim, or gist knowledge across presentation formats (all P > 0.05). Discussion. Use of an animated pictograph to communicate risk does not appear to augment or impede knowledge of risk information. Regardless of health literacy level, difficulty understanding pictographs presenting numerical information persists. There may be a benefit to teaching or priming individuals on how to interpret numerical information presented in pictographs before communicating risk using visual methods. Trial Registry: NCT02151032
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