Victoria A. Shaffer

Do personal stories make patient decision aids more effective? A critical review of theory and evidence.

BackgroundPatient 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.MethodsA 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.ResultsOf 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.ConclusionsThere 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.

All Stories Are Not Alike A Purpose-, Content-, and Valence-Based Taxonomy of Patient Narratives in Decision Aids

The use of patient stories in decision aids is a highly controversial practice. However, the resulting debates and research have yielded little consensus about the impact of patient stories due to vague operational definitions of narratives. In this article, we argue that narratives are not homogeneous in either content or effect and hence should not be considered a single construct in research. The purpose of this article is to provide a taxonomy that guides both the development of decision aids and future research on this topic. We define three dimensions of narratives that are likely to moderate their impact on decision making: 1) the purpose of the narrative, 2) the content of the message, and 3) the evaluative valence, or overall tone, of the message. In addition, we describe predicted effects of different types of narratives on decision making and discuss their potential interactions. Our taxonomy provides a framework that will allow for the precise documentation of different narrative types, the use of appropriate outcome measures, and a systematic evaluation of narratives in all types of decision aids. Failures to recognize the complex structure of narratives will result both in research that does little to inform our understanding of the impact of patient stories and in the use of narratives in patient education materials that have unintended consequences on both decision processes and behavior.

Patients Derogate Physicians Who Use a Computer-Assisted Diagnostic Aid

Objective . To ascertain whether a physician who uses a computer-assisted diagnostic support system (DSS) would be rated less capable than a physician who does not. Method . Students assumed the role of a patient with a possible ankle fracture (experiment 1) or a possible deep vein thrombosis (experiment 2). They read a scenario that described an interaction with a physician who used no DSS, one who used an unspecified DSS, or one who used a DSS developed at a prestigious medical center. Participants were then asked to rate the interaction on 5 criteria, the most important of which was the diagnostic ability of the physician. In experiment 3, 74 patients in the waiting room of a clinic were randomly assigned to the same 3 types of groups as used in experiment 1. In experiment 4, 131 3rd- and 4th-year medical students read a scenario of a physician-patient interaction and were randomly assigned to 1 of 4 groups: the physician used no DSS, heeded the recommendation of a DSS, defied a recommendation of a DSS by treating in a less aggressive manner, or defied a recommendation of a DSS by treating in a more aggressive manner . Results . The participants always deemed the physician who used no decision aid to have the highest diagnostic ability. Conclusion . Patients may surmise that a physician who uses a DSS is not as capable as a physician who makes the diagnosis with no assistance from a DSS. Key words: decision support techniques; diagnosis computer assisted; patient satisfaction. (Med Decis Making 2007; 27: 189—202)

The Motivational Properties of Tangible Incentives

Employers who spend considerable sums on noncash tangible incentives need to document their effectiveness and investigate the best means of delivery.

Why Do Patients Derogate Physicians Who Use a Computer-Based Diagnostic Support System?

Objective. To better understand 1) why patients have a negative perception of the use of computerized clinical decision support systems (CDSSs) and 2) what contributes to the documented heterogeneity in the evaluations of physicians who use a CDSS. Methods. Three vignette-based studies examined whether negative perceptions stemmed directly from the use of a computerized decision aid or the need to seek external advice more broadly (experiment 1) and investigated the contributing role of 2 individual difference measures, attitudes toward statistics (ATS; experiment 2) and the Multidimensional Health Locus of Control Scale (MHLC; experiment 3), to these findings. Results. A physician described as making an unaided diagnosis was rated significantly more positively on a number of attributes than a physician using a computerized decision aid but not a physician who sought the advice of an expert colleague (experiment 1). ATS were unrelated to perceptions of decision aid use (experiment 2); however, greater internal locus of control was associated with more positive feelings about unaided care and more negative feelings about care when a decision aid was used (experiment 3). Conclusion. Negative perceptions of computerized decision aid use may not be a product of the need to seek external advice more generally but may instead be specific to the use of a nonhuman tool and may be associated with individual differences in locus of control. Together, these 3 studies may be used to guide education efforts for patients.

The Effect of Patient Narratives on Information Search in a Web-Based Breast Cancer Decision Aid: An Eye-Tracking Study

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.

The Effect of Narrative Information in a Publicly Available Patient Decision Aid for Early-Stage Breast Cancer

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

Chemotherapy was not associated with cognitive decline in older adults with breast and colorectal cancer: Findings from a prospective cohort study

100 for completing the study. The two conditions differed in their motivations for the treatment decision and perceptions of the aids trustworthiness and emotionality but showed no differences in preferences for surgical treatments or evaluations of the decision aids 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.

Can the vaccine adverse event reporting system be used to increase vaccine acceptance and trust

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.

Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist

Vaccine refusal has an impact on public health, and the human pappillomavirus (HPV) vaccine is particularly underutilized. Research suggests that it may be difficult to change vaccine-related attitudes, and there is currently no good evidence to recommend any particular intervention strategy. One reason for vaccine hesitancy is lack of trust that vaccine harms are adequately documented and reported, yet few communication strategies have explicitly attempted to improve this trust. This study tested the possibility that data from the vaccine adverse event reporting system (VAERS) can be used to increase trust that vaccine harms are adequately researched and that potential harms are disclosed to the public, and thereby improve perceptions of vaccines. In the study, participants were randomly assigned to one of three communication interventions. All participants read the Centers for Disease Control (CDC) vaccine information statement (VIS) for the HPV vaccine. Two other groups were exposed to additional information about VAERS, either summary data or full detailed reports of serious adverse events from 2013. Results showed that the CDCs VIS alone significantly increased perceptions of vaccine benefits and decreased perceived risks. Participants who were also educated about VAERS and given summary data about the serious adverse events displayed more trust in the CDC and greater HPV vaccine acceptance relative to the VIS alone. However, exposure to the detailed VAERS reports significantly reduced trust in the CDC and vaccine acceptance. Hence, general information about the VAERS data slightly increased trust in the CDC and improved vaccine acceptance, but the specific VAERS reports negatively influenced both trust and acceptance. Implications for communicating about vaccines are discussed.