Teresa Gavaruzzi

Clarifying Values: An updated review

BackgroundConsensus guidelines have recommended that decision aids include a process for helping patients clarify their values. We sought to examine the theoretical and empirical evidence related to the use of values clarification methods in patient decision aids.MethodsBuilding on the International Patient Decision Aid Standards (IPDAS) Collaboration’s 2005 review of values clarification methods in decision aids, we convened a multi-disciplinary expert group to examine key definitions, decision-making process theories, and empirical evidence about the effects of values clarification methods in decision aids. To summarize the current state of theory and evidence about the role of values clarification methods in decision aids, we undertook a process of evidence review and summary.ResultsValues clarification methods (VCMs) are best defined as methods to help patients think about the desirability of options or attributes of options within a specific decision context, in order to identify which option he/she prefers. Several decision making process theories were identified that can inform the design of values clarification methods, but no single “best” practice for how such methods should be constructed was determined. Our evidence review found that existing VCMs were used for a variety of different decisions, rarely referenced underlying theory for their design, but generally were well described in regard to their development process. Listing the pros and cons of a decision was the most common method used. The 13 trials that compared decision support with or without VCMs reached mixed results: some found that VCMs improved some decision-making processes, while others found no effect.ConclusionsValues clarification methods may improve decision-making processes and potentially more distal outcomes. However, the small number of evaluations of VCMs and, where evaluations exist, the heterogeneity in outcome measures makes it difficult to determine their overall effectiveness or the specific characteristics that increase effectiveness.

Design Features of Explicit Values Clarification Methods A Systematic Review

Background. Values clarification is a recommended element of patient decision aids. Many different values clarification methods exist, but there is little evidence synthesis available to guide design decisions. Purpose. To describe practices in the field of explicit values clarification methods according to a taxonomy of design features. Data Sources. MEDLINE, all EBM Reviews, CINAHL, EMBASE, Google Scholar, manual search of reference lists, and expert contacts. Study Selection. Articles were included if they described 1 or more explicit values clarification methods. Data Extraction. We extracted data about decisions addressed; use of theories, frameworks, and guidelines; and 12 design features. Data Synthesis. We identified 110 articles describing 98 explicit values clarification methods. Most of these addressed decisions in cancer or reproductive health, and half addressed a decision between just 2 options. Most used neither theory nor guidelines to structure their design. “Pros and cons” was the most common type of values clarification method. Most methods did not allow users to add their own concerns. Few methods explicitly presented tradeoffs inherent in the decision, supported an iterative process of values exploration, or showed how different options aligned with users’ values. Limitations. Study selection criteria and choice of elements for the taxonomy may have excluded values clarification methods or design features. Conclusions. Explicit values clarification methods have diverse designs but can be systematically cataloged within the structure of a taxonomy. Developers of values clarification methods should carefully consider each of the design features in this taxonomy and publish adequate descriptions of their designs. More research is needed to study the effects of different design features.

Risk Estimates From an Online Risk Calculator Are More Believable and Recalled Better When Expressed as Integers

Background Online risk calculators offer different levels of precision in their risk estimates. People interpret numbers in varying ways depending on how they are presented, and we do not know how the number of decimal places displayed might influence perceptions of risk estimates. Objective The objective of our study was to determine whether precision (ie, number of decimals) in risk estimates offered by an online risk calculator influences users’ ratings of (1) how believable the estimate is, (2) risk magnitude (ie, how large or small the risk feels to them), and (3) how well they can recall the risk estimate after a brief delay. Methods We developed two mock risk calculator websites that offered hypothetical percentage estimates of participants’ lifetime risk of kidney cancer. Participants were randomly assigned to a condition where the risk estimate value rose with increasing precision (2, 2.1, 2.13, 2.133) or the risk estimate value fell with increasing precision (2, 1.9, 1.87, 1.867). Within each group, participants were randomly assigned one of the four numbers as their first risk estimate, and later received one of the remaining three as a comparison. Results Participants who completed the experiment (N = 3422) were a demographically diverse online sample, approximately representative of the US adult population on age, gender, and race. Participants whose risk estimates had no decimal places gave the highest ratings of believability (F 3,3384 = 2.94, P = .03) and the lowest ratings of risk magnitude (F 3,3384 = 4.70, P = .003). Compared to estimates with decimal places, integer estimates were judged as highly believable by 7%–10% more participants (χ2 3 =17.8, P < .001). When comparing two risk estimates with different levels of precision, large majorities of participants reported that the numbers seemed equivalent across all measures. Both exact and approximate recall were highest for estimates with zero decimals. Odds ratios (OR) for correct approximate recall (defined as being within 50% of the original estimate) were, for one decimal place, OR = 0.65 (95% CI 0.49–0.86), for two decimal places, OR = 0.70 (95% CI 0.53–0.94), and for three decimal places, 0.61 (95% CI 0.45–0.81). Exact recall showed a similar pattern, with larger effects. Conclusions There are subtle but measurable differences in how people interpret risk estimates of varying precision. Adding decimal places in risk calculators offers little to no benefit and some cost. Rounding to the nearest integer is likely preferable for communicating risk estimates via risk calculators so that they might be remembered correctly and judged as believable.

What Makes a Tumor Diagnosis a Call to Action? On the Preference for Action versus Inaction

Background. Many studies have shown an omission bias, but when the context is cancer, people seem to prefer active treatments to watchful waiting. Objective. First, to investigate whether the preference for active treatment for cancer could depend on the associations attached to the inaction option, and second, to explore the kind of diagnosis that gives rise to the preference for action, by comparing scenarios differing in the status of the illness (already present v. could arise in the future), the kind of diagnosis (malign tumor, benign tumor, or nontumor), and the possible development of the tumor (growth v. degeneration). Design. Between-subjects design with 8 hypothetical scenarios. Participants. A total of 735 students participated in an Internet survey. Measurements. Choice between watchful waiting and surgery, perceived severity of the diagnosis. Results. Active treatment was preferred only when the scenario described watchful waiting as excluding surgery in the future. The critical aspect for participants’ preference for active treatment was the malignancy of the tumor currently diagnosed. Perceived severity was also a significant predictor of treatment choice. Limitations. Inability to infer causation in the relationship between choice and perceived severity. Conclusions. Action is preferred to inaction when a malignant tumor is currently diagnosed and active treatments are not allowed in the future; under other conditions, participants prefer inaction (e.g., when active treatments are allowed in the future, or when the tumor is benign) or exhibit no preference (e.g., when it is not specified whether active treatments are allowed in the future).

Effects of Design Features of Explicit Values Clarification Methods A Systematic Review

Background. Diverse values clarification methods exist. It is important to understand which, if any, of their design features help people clarify values relevant to a health decision. Purpose. To explore the effects of design features of explicit values clarification methods on outcomes including decisional conflict, values congruence, and decisional regret. Data Sources. MEDLINE, all EBM Reviews, CINAHL, EMBASE, Google Scholar, manual search of reference lists, and expert contacts. Study Selection. Articles were included if they described the evaluation of 1 or more explicit values clarification methods. Data Extraction. We extracted details about the evaluation, whether it was conducted in the context of actual or hypothetical decisions, and the results of the evaluation. We combined these data with data from a previous review about each values clarification method’s design features. Data Synthesis. We identified 20 evaluations of values clarification methods within 19 articles. Reported outcomes were heterogeneous. Few studies reported values congruence or postdecision outcomes. The most promising design feature identified was explicitly showing people the implications of their values, for example, by displaying the extent to which each of their decision options aligns with what matters to them. Limitations. Because of the heterogeneity of outcomes, we were unable to perform a meta-analysis. Results should be interpreted with caution. Conclusions. Few values clarification methods have been evaluated experimentally. More research is needed to determine effects of different design features of values clarification methods and to establish best practices in values clarification. When feasible, evaluations should assess values congruence and postdecision measures of longer-term outcomes.

Bowel function and quality of life after local excision or total mesorectal excision following chemoradiotherapy for rectal cancer

Local excision for rectal cancer is expected to offer a better functional outcome than conventional surgery. The aim of the present study was to compare quality of life and bowel function in patients with rectal cancer who underwent either local excision or conventional surgery after chemoradiotherapy.

Quality of life after surgery for rectal cancer: a systematic review of comparisons with the general population

Rectal cancer treatments may impact negatively on patients’ bowel and sexual functions and, in turn, on health-related quality of life. Information on the likely effects of treatment is essential in order to facilitate the care process and the adaptation of patients to their condition. Studies that report on the comparison between rectal cancer patients and the general population are a useful source of this evidence, providing elements to aid in answering questions such as ‘is my life going to be the same as before?’ In this article, the authors have systematically reviewed articles published in the last 6 years that report on the comparison between rectal patients’ and the general population’s health-related quality of life. Sixteen out of 645 articles were included. The results are summarized and critically discussed.

Patient-reported outcomes after neoadjuvant therapy for rectal cancer: a systematic review

Neoadjuvant therapy followed by total mesorectal excision is standard of care for locally advanced rectal cancer. However, this approach has been previously shown to be associated with high rate of morbidity and it may have a negative effect on patients’ reported outcomes (PROs). In order to summarize findings on the effect of the neoadjuvant approach on PROs, we systematically reviewed articles published in the last five years. Thirty-five articles met the inclusion criteria. Ten articles compared the effect of surgery with and without neoadjuvant therapy, six articles compared different neoadjuvant therapies, ten articles reported on patients who were all treated with neoadjuvant therapy, and nine articles examined the effect of neoadjuvant therapy in the analyses. The results are summarized by function investigated and critically commented.

Quality of Life and Functions After Chemoradiation for Rectal Cancer: A Review of Recent Publications

We have systematically reviewed studies published in the last three years on patients’ self-reported evaluations of quality of life (QoL) and functions after chemoradiotherapy (CRT) for rectal cancer. Overall, the findings from 13 studies confirmed that CRT negatively affect functions and, consequently, patients’ QoL, especially for bowel, role, and social function. The studies’ heterogeneity limited the possibility of comparison among findings. We discuss and comment on the ideal characteristics of studies assessing QoL and function. We emphasise how this type of evidence is relevant to decision-making at all levels of health-care practice.

A Psychological Perspective on Factors Predicting Prophylactic Salpingo-Oophorectomy in a Sample of Italian Women from the General Population. Results from a Hypothetical Study in the Context of BRCA Mutations

The aim of this study was to assess attitudes toward ovarian cancer risk management options for BRCA mutation carriers in healthy Italian women, and to identify predictors of the preference for risk reducing salpingo-oophorectomy (RRSO) over surveillance. One hundred eighty-one women aged 30–45 completed a questionnaire about preferences, knowledge, risk perception, and socio-demographic information. Participants were randomly presented with a pamphlet about BRCA1 or BRCA2 mutation-specific testing, consequences of testing and preventive options for carriers, and they were stratified by having children or not and by age group. Surveillance was the preferred option (64.6%), followed by RRSO (24.3%). Although RRSO is the only effective strategy available to BRCA carriers, most healthy women faced for the first time with this option may not consider it as their preferred choice. Predictors associated with a higher likelihood to prefer surgery over surveillance were: knowing that life expectancy is longer with surgery, perceived comprehension of the consequences of testing, previous knowledge about BRCA testing, anticipated worry about developing cancer, and feelings of risk. Childbearing intentions and the effect of childbearing intentions on choice were associated with a lower preference for surgery. Further research is needed to confirm the role of the factors identified in this study in order to promote informed decision-making about RRSO.