All Stories Are Not Alike : A Purpose-, Content-, and Valence-Based Taxonomy of Patient Narratives in Decision AidsShaffer, Victoria A.; Zikmund-Fisher, Brian J.
doi: 10.1177/0272989x12463266pmid: 23065418
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.
Effect of Narrative Reports about Vaccine Adverse Events and Bias-Awareness Disclaimers on Vaccine Decisions : A Simulation of an Online Patient Social NetworkBetsch, Cornelia; Renkewitz, Frank; Haase, Niels
doi: 10.1177/0272989x12452342pmid: 22875721
Background. As the number of individuals who search for health information in interactive online environments is increasing, patient networks deserve more scientific attention. Objective. To quantitatively examine if and how reading statistical and/or narrative information as typically displayed in patient networks (e.g., patientslikeme.com) affects decisions for pharmaceuticals. Previous work suggests that narrative information (e.g., about vaccine adverse events, VAE) affects risk perceptions and intentions. The authors compare the effect of narrative and statistical information about VAE on vaccination decisions and examine if a disclaimer reduces the narrative bias as well as if low numeracy leads to increased use of the narratives. Method and Design. In an online experiment, 458 participants were randomly assigned to a 3 (relative frequency of vaccine adverse events in 1, 7, or 17 of 20 cases) × 3 (type of information: narratives, summary statistics, or both) × 2 (bias awareness v. control disclaimer) between-subjects design. Measurements. Perceived risk, vaccination intention, and subjective numeracy. Results. A higher relative frequency of cases reporting VAE decreased the intention to get vaccinated. This relation was mediated by increased risk perception. The type of information moderated the contents’ impact: Summary statistics had the smallest impact, whereas narrative information was more influential, and the presence of both types of information had the greatest impact on risk perception. Individuals who received the bias-awareness disclaimer were less influenced by the patient network. Highly numerate individuals were generally more sensitive to the provided information independent of its format. Conclusions. Patient networks can influence vaccination decisions by delivering risk-related information. Disclaimers may help to reduce the influence if desired.
Patients’ Experiences of Shared Decision Making in Primary Care Practices in the United KingdomFullwood, Catherine; Kennedy, Anne; Rogers, Anne; Eden, Martin; Gardner, Caroline; Protheroe, Joanne; Reeves, David
doi: 10.1177/0272989x12464825pmid: 23128580
Background. Shared decision making (SDM) and patient self-management support are key components of US and UK policy for chronic disease management, whereby SDM is seen as enhancing physician-patient negotiation around self-management. The WISE trial is implementing training in self-management support for primary care physicians in one UK region. This article describes preintervention levels of patient-reported SDM and explores how this varies with patient and practice characteristics. Methods. We analyzed baseline data from a cluster randomized controlled trial for 2965 patients with diabetes, chronic obstructive pulmonary disease, and irritable bowel syndrome (IBS) from 29 family practices. Patient-level measures included self-report of chronic conditions, SDM (Health Care Climate Questionnaire [HCCQ]), health status, and demographic characteristics. Area and practice characteristics included chronic disease workload and socioeconomic deprivation. Results. The mean SDM score was 75 (out of 100), but the range was wide. The mean score was lower for IBS patients but did not vary with other disease conditions. Younger patients and those with poorer health status reported lower degrees of SDM. No associations were found with practice characteristics. Limitations. The study was restricted to one socioeconomically deprived region, and hence results may not be nationally representative of the United Kingdom. Ceiling effects on SDM scores may limit the utility of the HCCQ. Conclusions. Lower ratings from some patient groups may reflect differences in expectations rather than differences in physician behavior. Overall levels of SDM were high, and no patient or practice characteristic represented a serious barrier to SDM. However, we cannot say to what extent SDM in this chronic population addressed self-management issues rather than clinical care. More nuanced measures of SDM are required that distinguish between different forms of care.
When Decisions Should Be Shared : A Study of Social Norms in Medical Decision Making Using a Factorial Survey ApproachMüller-Engelmann, Meike; Donner-Banzhoff, Norbert; Keller, Heidi; Rosinger, Lydia; Sauer, Carsten; Rehfeldt, Kerstin; Krones, Tanja
doi: 10.1177/0272989x12458159pmid: 23054365
Background. Shared decision making (SDM) is often advocated as an ideal for making medical decisions. Until now, however, opinions regarding which treatment situations warrant SDM have not been systematically investigated. The purpose of this study was to examine social norms regarding medical decision making, using a factorial survey design. Methods. The factorial survey applied in this study consisted of 7 situational factors (e.g., the reason for consultation), each with 2 to 3 levels (e.g., prevention and severe disease). These factors were turned into various descriptions of treatment situations. A total of 101 physicians, 115 patients, and 113 members of self-help groups participated in the study. Each participant assessed 10 vignettes using a 5-point scale to indicate who they thought should make the decision in each specific situation. Results. Most assessments across the 3 groups called for a shared decision (39%). Ordered logistic regression analysis demonstrated that, according to study participants, all 7 situational factors (reason for consultation, time frame of negative outcomes, time pressure, number of therapeutic options, side effects, scientific evidence of efficacy, and desire to participate) significantly affected how decisions regarding treatment should be made. The strongest factor was the patient’s desire to participate in decision making (odds ratio = 1.84; P ≤ 0.001), followed by the reason for consultation (odds ratio = 0.69; P ≤ 0.001). Conclusions. This study reveals that there is a general desire for SDM in a variety of treatment situations. Furthermore, based on the responses of our participants, our findings also lay the framework in determining which treatment situations warrant SDM.
Using Comparison Scenarios to Improve Prenatal Risk CommunicationPighin, Stefania; Savadori, Lucia; Barilli, Elisa; Rumiati, Rino; Bonalumi, Sara; Ferrari, Maurizio; Cremonesi, Laura
doi: 10.1177/0272989x12464433pmid: 23100462
The present research provides empirical evidence of whether communicating the prenatal risk of chromosomal anomalies using comparison scenarios influences women’s ability to distinguish between different risk levels. In 2 experiments, participants read a description of a hypothetical woman who was learning of the risk of chromosomal anomaly as a result of a prenatal screening test. Both experiments used a 3 (risk level) × 3 (scenario) full between-subjects design. In accordance with the experimental condition, participants were presented with a low (e.g., 1 in 5390), a medium (e.g., 1 in 770), or a high risk value (e.g., 1 in 110). Such risk values were presented either on their own or along with additional information illustrating a comparison scenario that provided 2 numerical comparison points. Participants were asked to evaluate the risk of chromosomal anomaly. In Experiment 2, participants’ numeracy skills were also assessed. Results showed that the use of comparison scenarios results in significant differences in perceived risk across risk levels whereas such differences are not significant without the comparison scenario, but such a technique has differential effects according to participants’ capacity to deal with numbers. Although the technique is beneficial for high-numerate participants, it has no effect on low-numerate participants.
Patients’ Preferences and Priorities Regarding Colorectal Cancer ScreeningDolan, James G.; Boohaker, Emily; Allison, Jeroan; Imperiale, Thomas F.
doi: 10.1177/0272989x12453502pmid: 22895558
Background. US colorectal cancer screening guidelines for people at average risk for colorectal cancer endorse multiple screening options and recommend that screening decisions reflect individual patient preferences. Methods. The authors used the analytic hierarchy process (AHP) to ascertain decision priorities of people at average risk for colorectal cancer attending primary care practices in Rochester, New York; Birmingham, Alabama; and Indianapolis, Indiana. The analysis included 4 decision criteria, 3 subcriteria, and 10 options. Results. Four hundred eighty-four people completed the study; 66% were female, 49% were African American, 9% had low literacy skills, and 27% had low numeracy skills. Overall, preventing cancer was given the highest priority (mean priority 55%), followed by avoiding screening test side effects (mean priority 17%), minimizing false-positive test results (mean priority 15%), and the combined priority of screening frequency, test preparation, and the test procedure(s) (mean priority 14%). Hierarchical cluster analysis revealed 6 distinct priority groupings containing multiple instances of decision priorities that differed from the average value by a factor of 4 or more. More than 90% of the study participants fully understood the concepts involved, 79% met AHP analysis quality standards, and 88% were willing to use similar methods to help make important health care decisions. Conclusion. These results highlight the need to facilitate incorporation of patient preferences into colorectal cancer screening decisions. The large number of study participants able and willing to perform the complex AHP analysis used for this study suggests that the AHP is a useful tool for identifying the patient-specific priorities needed to ensure that screening decisions appropriately reflect individual patient preferences.
On Averages and Peaks : How Do People Integrate Attitudes about Multiple Diseases to Reach a Decision about Multiplex Genetic Testing?Shiloh, Shoshana; Wade, Christopher H.; Roberts, J. Scott; Hensley Alford, Sharon; Biesecker, Barbara B.
doi: 10.1177/0272989x12464432pmid: 23128581
Background. The aim of the current study was to learn how people integrate attitudes about multiple health conditions to make a decision about genetic testing uptake. Methods. This study recruited 294 healthy young adults from a parent research project, the Multiplex Initiative, conducted in a large health care system in Detroit, Michigan. All participants were offered a multiplex genetic test that assessed risk for 8 common health conditions (e.g., type 2 diabetes). Data were collected from a baseline survey, a web-based survey, and at the time of testing. Results. Averaging attitudes across diseases predicted test uptake but did not contribute beyond peak attitudes, the highest attitude toward testing for a single disease in the set. Peak attitudes were found sufficient to predict test uptake. Limitations. The effects of set size and mode of presentation could not be examined because these factors were constant in the multiplex test offered. Conclusions. These findings support theories suggesting that people use representative evaluations in attitude formation. The implication of these findings for further developments in genetic testing is that the communication and impact of multiplex testing may need to be considered in the light of a bias toward peak attitudes.
Interpreting Patient Decisional Conflict Scores : Behavior and Emotions in Decisions about TreatmentKnops, Anouk M.; Goossens, Astrid; Ubbink, Dirk T.; Legemate, Dink A.; Stalpers, Lukas J.; Bossuyt, Patrick M.
doi: 10.1177/0272989x12453500pmid: 22927695
Background. Patient decision aids facilitate treatment decisions. They are often evaluated in terms of their effect on decisional conflict, as measured by the Decisional Conflict Scale (DCS). It is unclear to what extent lower DCS scores are accompanied by observable patient behavior or emotions. Objective. To help interpret DCS scores. Design. In a Dutch university hospital, statements on behaviors or emotions during decision making were collected from asymptomatic aneurysm patients and healthy employees. Subsequently, they rated the intensity of decisional conflict that each statement expresses on a 1 to 10 scale. Selected statements were prospectively tested in aneurysm patients and cancer patients facing treatment dilemmas. Measurements. Associations between patients’ DCS scores and reported behavior and emotions were analyzed using logistic regression analysis. Results. Participants provided 363 statements on behaviors and emotions during decision making, of which 28 were mentioned more than 4 times. Nine forms of behavior and emotions were selected as they were graded with the least variable median ratings of intensity of decisional conflict. Among 100 patients facing a treatment dilemma, each point increase in DCS lowered their odds for “immediately making the decision” (odds ratio [OR], 0.96; 95% confidence interval [CI], 0.93–0.98), whereas the odds of “fretting regularly” (OR, 1.05; 95% CI, 1.02–1.08) and “feeling nervous when thinking of the decision” (OR, 1.04; 95% CI, 1.01–1.06) where higher. Conclusions. A decrease in decisional conflict scores leads to less decision postponing behavior, fretting, and nervousness. Research should focus on which DCS scores are needed to make deliberate decisions and which scores hinder patients in decision making.
Incorporating Patient Decision Aids into Standard Clinical Practice in an Integrated Delivery SystemHsu, Clarissa; Liss, David T.; Westbrook, Emily O.; Arterburn, David
doi: 10.1177/0272989x12468615pmid: 23300204
Background. Randomized controlled trials show that patient decision aids (DAs) can promote shared decision making and improve decision quality. Despite this evidence, integration of DAs into routine clinical practice has proceeded slowly. Objective. To identify factors that promote or impede integrating DAs into clinical practice in a large health care delivery system. Design. Mixed-methods case study. Setting and Patients. Group Health, an integrated health plan and care delivery system in Washington state. Intervention. The project was carried out in 6 specialty service lines using 12 video-based DAs for preference-sensitive conditions related to elective surgical procedures. Measurements. Process data, site visits, meeting observations, and in-depth interviews conducted with clinical staff, project staff, and health plan leaders in 2009 and 2010. Results. The project established systemwide and clinic-specific processes that facilitated the distribution of approximately 10,000 DAs over 2 years. Several factors were identified as important for success in this implementation, including strong support from senior leaders, establishing a system for previsit ordering and providing timely feedback to teams about distribution rates, engaging providers and staff in development of the implementation process, and finding ways to address concerns about conditions that were perceived as life-threatening and/or time sensitive. Limitations. Limitations included lack of data on patient perspectives, an implementation setting with salaried providers, and frontline provider interviews conducted in only selected service lines. Conclusions. With strong leadership, financial support, and a well-defined implementation strategy, 12 video-based DAs in 6 specialty service lines were integrated into routine practice over 2 years. Findings from this demonstration may advance the ability of other organizations to use DAs effectively and promote widespread adoption of shared decision making in routine patient care.
How to Discriminate between Computer-Aided and Computer-Hindered Decisions : A Case Study in MammographyPovyakalo, Andrey A.; Alberdi, Eugenio; Strigini, Lorenzo; Ayton, Peter
doi: 10.1177/0272989x12465490pmid: 23300205
Background. Computer aids can affect decisions in complex ways, potentially even making them worse; common assessment methods may miss these effects. We developed a method for estimating the quality of decisions, as well as how computer aids affect it, and applied it to computer-aided detection (CAD) of cancer, reanalyzing data from a published study where 50 professionals (“readers”) interpreted 180 mammograms, both with and without computer support. Method. We used stepwise regression to estimate how CAD affected the probability of a reader making a correct screening decision on a patient with cancer (sensitivity), thereby taking into account the effects of the difficulty of the cancer (proportion of readers who missed it) and the reader’s discriminating ability (Youden’s determinant). Using regression estimates, we obtained thresholds for classifying a posteriori the cases (by difficulty) and the readers (by discriminating ability). Results. Use of CAD was associated with a 0.016 increase in sensitivity (95% confidence interval [CI], 0.003–0.028) for the 44 least discriminating radiologists for 45 relatively easy, mostly CAD-detected cancers. However, for the 6 most discriminating radiologists, with CAD, sensitivity decreased by 0.145 (95% CI, 0.034–0.257) for the 15 relatively difficult cancers. Conclusions. Our exploratory analysis method reveals unexpected effects. It indicates that, despite the original study detecting no significant average effect, CAD helped the less discriminating readers but hindered the more discriminating readers. Such differential effects, although subtle, may be clinically significant and important for improving both computer algorithms and protocols for their use. They should be assessed when evaluating CAD and similar warning systems.