Carmen L. Lewis

“Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice

BackgroundTwo decades of research has established the positive effect of using patient-targeted decision support interventions: patients gain knowledge, greater understanding of probabilities and increased confidence in decisions. Yet, despite their efficacy, the effectiveness of these decision support interventions in routine practice has yet to be established; widespread adoption has not occurred. The aim of this review was to search for and analyze the findings of published peer-reviewed studies that investigated the success levels of strategies or methods where attempts were made to implement patient-targeted decision support interventions into routine clinical settings.MethodsAn electronic search strategy was devised and adapted for the following databases: ASSIA, CINAHL, Embase, HMIC, Medline, Medline-in-process, OpenSIGLE, PsycINFO, Scopus, Social Services Abstracts, and the Web of Science. In addition, we used snowballing techniques. Studies were included after dual independent assessment.ResultsAfter assessment, 5322 abstracts yielded 51 articles for consideration. After examining full-texts, 17 studies were included and subjected to data extraction. The approach used in all studies was one where clinicians and their staff used a referral model, asking eligible patients to use decision support. The results point to significant challenges to the implementation of patient decision support using this model, including indifference on the part of health care professionals. This indifference stemmed from a reported lack of confidence in the content of decision support interventions and concern about disruption to established workflows, ultimately contributing to organizational inertia regarding their adoption.ConclusionsIt seems too early to make firm recommendations about how best to implement patient decision support into routine practice because approaches that use a ‘referral model’ consistently report difficulties. We sense that the underlying issues that militate against the use of patient decision support and, more generally, limit the adoption of shared decision making, are under-investigated and under-specified. Future reports from implementation studies could be improved by following guidelines, for example the SQUIRE proposals, and by adopting methods that would be able to go beyond the ‘barriers’ and ‘facilitators’ approach to understand more about the nature of professional and organizational resistance to these tools. The lack of incentives that reward the use of these interventions needs to be considered as a significant impediment.

A randomized comparison of patients' understanding of number needed to treat and other common risk reduction formats.

BACKGROUND: Commentators have suggested that patients may understand quantitative information about treatment benefits better when they are presented as numbers needed to treat (NNT) rather than as absolute or relative risk reductions. OBJECTIVE: To determine whether NNT helps patients interpret treatment benefits better than absolute risk reduction (ARR), relative risk reduction (RRR), or a combination of all three of these risk reduction presentations (COMBO). DESIGN: Randomized cross-sectional survey. SETTING: University internal medicine clinic. PATIENTS: Three hundred fifty-seven men and women, ages 50 to 80, who presented for health care. INTERVENTIONS: Subjects were given written information about the baseline risk of a hypothetical “disease Y” and were asked (1) to compare the benefits of two drug treatments for disease Y, stating which provided more benefit; and (2) to calculate the effect of one of those drug treatments on a given baseline risk of disease. Risk information was presented to each subject in one of four randomly allocated risk formats: NNT, ARR, RRR, or COMBO. MAIN RESULTS: When asked to state which of two treatments provided more benefit, subjects who received the RRR format responded correctly most often (60% correct vs 43% for COMBO, 42% for ARR, and 30% for NNT, P=.001). Most subjects were unable to calculate the effect of drug treatment on the given baseline risk of disease, although subjects receiving the RRR and ARR formats responded correctly more often (21% and 17% compared to 7% for COMBO and 6% for NNT, P=.004). CONCLUSION: Patients are best able to interpret the benefits of treatment when they are presented in an RRR format with a given baseline risk of disease. ARR also is easily interpreted. NNT is often misinterpreted by patients and should not be used alone to communicate risk to patients.

Decision-making processes for breast, colorectal, and prostate cancer screening: the DECISIONS survey.

Background Patients should understand the risks and benefits of cancer screening in order to make informed screening decisions. Objectives To evaluate the extent of informed decision making in patient-provider discussions for colorectal (CRC), breast (BrCa), and prostate (PCa) cancer screening. Setting National sample of US adults identified by random-digit dialing. Design Cross-sectional survey conducted between November 2006 and May 2007. Participants English-speaking US adults aged 50 y and older who had discussed cancer screening with a health care provider within the previous 2 y. Measurements Cancer screening survey modules that asked about demographic characteristics, cancer knowledge, the importance of various sources of information, and self-reported cancer screening decision-making processes. Results Overall, 1082 participants completed 1 or more of the 3 cancer modules. Although participants generally considered themselves well informed about screening tests, half or more could not correctly answer even 1 open-ended knowledge question for any given module. Participants consistently overestimated risks for being diagnosed with and dying from each cancer and overestimated the positive predictive values of prostate-specific antigen tests and mammography. Providers were the most highly rated information source, usually initiated screening discussions (64%–84%), and often recommended screening (73%–90%). However, participants reported that providers elicited their screening preferences in only 31% (CRC women) to 57% (PCa) of discussions. Although more than 90% of the discussions addressed the pros of screening, only 19% (BrCa) to 30% (PCa) addressed the cons of screening. Limitations Recall bias is possible because screening process reports were not independently validated. Conclusions Cancer screening decisions reported by patients who discussed screening with their health care providers consistently failed to meet criteria for being informed. Given the high ratings for provider information and frequent recommendations for screening, providers have important opportunities to ensure that informed decision making occurs for cancer screening decisions.

The Harms of Screening: A Proposed Taxonomy and Application to Lung Cancer Screening

IMPORTANCE Making rational decisions about screening requires information about its harms, but high-quality evidence is often either not available or not used. One reason may be that we lack a coherent framework, a taxonomy, for conceptualizing and studying these harms. OBJECTIVE To create a taxonomy, we categorized harms from several sources: systematic reviews of screening, other published literature, and informal discussions with clinicians and patients. We used this information to develop an initial taxonomy and vetted it with local and national experts, making revisions as needed. RESULTS We propose a taxonomy with 4 domains of harm from screening: physical effects, psychological effects, financial strain, and opportunity costs. Harms can occur at any step of the screening cascade. We provide definitions for each harm domain and illustrate the taxonomy using the example of screening for lung cancer. CONCLUSIONS AND RELEVANCE The taxonomy provides a systematic way to conceptualize harms as experienced by patients. As shown in the lung cancer screening example, the taxonomy also makes clear where (which domains of harms and which parts of the screening cascade) we have useful information and where there are gaps in our knowledge. The taxonomy needs further testing and validation across a broad range of screening programs. We hope that further development of this taxonomy can improve our thinking about the harms of screening, thus informing our research, policy making, and decision making with patients about the wisdom of screening.

Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation

Objective: Shared decision making is inadequate in intensive care units. Decision aids can improve decision making quality, though their role in an intensive care units setting is unclear. We aimed to develop and pilot test a decision aid for shared decision makers of patients undergoing prolonged mechanical ventilation. Setting: Intensive care units at three medical centers. Subjects: Fifty-three surrogate decision makers and 58 physicians. Design and Interventions: We developed the decision aid using defined methodological guidelines. After an iterative revision process, formative cognitive testing was performed among surrogate–physician dyads. Next, we compared the decision aid to usual care control in a prospective, before/after design study. Measurements and Main Results: Primary outcomes were physician–surrogate discordance for expected patient survival, comprehension of relevant medical information, and the quality of communication. Compared to control, the intervention group had lower surrogate–physician discordance (7 [10] vs. 43 [21]), greater comprehension (11.4 [0.7] vs. 6.1 [3.7]), and improved quality of communication (8.7 [1.3] vs. 8.4 [1.3]) (all p < .05) post-intervention. Hospital costs were lower in the intervention group (

The effect of offering different numbers of colorectal cancer screening test options in a decision aid: a pilot randomized trial

110,609 vs.

Supporting Shared Decisions When Clinical Evidence Is Low

178,618; p = .044); mortality did not differ by group (38% vs. 50%, p = .95). Ninety-four percent of the surrogates and 100% of the physicians reported that the decision aid was useful in decision making. Conclusion: We developed a prolonged mechanical ventilation decision aid that is feasible, acceptable, and associated with both improved decision-making quality and less resource utilization. Further evaluation using a randomized controlled trial design is required to evaluate the decision aid’s effect on long-term patient and surrogate outcomes.

Conjoint Analysis Versus Rating and Ranking for Values Elicitation and Clarification in Colorectal Cancer Screening

BackgroundDecision aids can improve decision making processes, but the amount and type of information that they should attempt to communicate is controversial. We sought to compare, in a pilot randomized trial, two colorectal cancer (CRC) screening decision aids that differed in the number of screening options presented.MethodsAdults ages 48–75 not currently up to date with screening were recruited from the community and randomized to view one of two versions of our previously tested CRC screening decision aid. The first version included five screening options: fecal occult blood test (FOBT), sigmoidoscopy, a combination of FOBT and sigmoidoscopy, colonoscopy, and barium enema. The second discussed only the two most frequently selected screening options, FOBT and colonoscopy. Main outcomes were differences in screening interest and test preferences between groups after decision aid viewing. Patient test preference was elicited first without any associated out-of-pocket costs (OPC), and then with the following costs: FOBT-

Confidence of Academic General Internists and Family Physicians to Teach Ambulatory Procedures

10, sigmoidoscopy-

Patient preferences for care by general internists and specialists in the ambulatory setting

50, barium enema-