Lyndal Trevena

Shared decision making: really putting patients at the centre of healthcare

Although many clinicians feel they already use shared decision making, research shows a perception-reality gap. A M Stiggelbout and colleagues discuss why it is important and highlight some best practices

Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers

BackgroundMaking evidence-based decisions often requires comparison of two or more options. Research-based evidence may exist which quantifies how likely the outcomes are for each option. Understanding these numeric estimates improves patients’ risk perception and leads to better informed decision making. This paper summarises current “best practices” in communication of evidence-based numeric outcomes for developers of patient decision aids (PtDAs) and other health communication tools.MethodAn expert consensus group of fourteen researchers from North America, Europe, and Australasia identified eleven main issues in risk communication. Two experts for each issue wrote a “state of the art” summary of best evidence, drawing on the PtDA, health, psychological, and broader scientific literature. In addition, commonly used terms were defined and a set of guiding principles and key messages derived from the results.ResultsThe eleven key components of risk communication were: 1) Presenting the chance an event will occur; 2) Presenting changes in numeric outcomes; 3) Outcome estimates for test and screening decisions; 4) Numeric estimates in context and with evaluative labels; 5) Conveying uncertainty; 6) Visual formats; 7) Tailoring estimates; 8) Formats for understanding outcomes over time; 9) Narrative methods for conveying the chance of an event; 10) Important skills for understanding numerical estimates; and 11) Interactive web-based formats. Guiding principles from the evidence summaries advise that risk communication formats should reflect the task required of the user, should always define a relevant reference class (i.e., denominator) over time, should aim to use a consistent format throughout documents, should avoid “1 in x” formats and variable denominators, consider the magnitude of numbers used and the possibility of format bias, and should take into account the numeracy and graph literacy of the audience.ConclusionA substantial and rapidly expanding evidence base exists for risk communication. Developers of tools to facilitate evidence-based decision making should apply these principles to improve the quality of risk communication in practice.

A decision aid to support informed choices about bowel cancer screening among adults with low education: randomised controlled trial

Objective To determine whether a decision aid designed for adults with low education and literacy can support informed choice and involvement in decisions about screening for bowel cancer. Design Randomised controlled trial. Setting Areas in New South Wales, Australia identified as socioeconomically disadvantaged (low education attainment, high unemployment, and unskilled occupations). Participants 572 adults aged between 55 and 64 with low educational attainment, eligible for bowel cancer screening. Intervention Patient decision aid comprising a paper based interactive booklet (with and without a question prompt list) and a DVD, presenting quantitative risk information on the possible outcomes of screening using faecal occult blood testing compared with no testing. The control group received standard information developed for the Australian national bowel screening programme. All materials and a faecal occult blood test kit were posted directly to people’s homes. Main outcome measures Informed choice (adequate knowledge and consistency between attitudes and screening behaviour) and preferences for involvement in screening decisions. Results Participants who received the decision aid showed higher levels of knowledge than the controls; the mean score (maximum score 12) for the decision aid group was 6.50 (95% confidence interval 6.15 to 6.84) and for the control group was 4.10 (3.85 to 4.36; P<0.001). Attitudes towards screening were less positive in the decision aid group, with 51% of the participants expressing favourable attitudes compared with 65% of participants in the control group (14% difference, 95% confidence interval 5% to 23%; P=0.002). The participation rate for screening was reduced in the decision aid group: completion of faecal occult blood testing was 59% v 75% in the control group (16% difference, 8% to 24%; P=0.001). The decision aid increased the proportion of participants who made an informed choice, from 12% in the control group to 34% in the decision aid group (22% difference, 15% to 29%; P<0.001). More participants in the decision aid group had no decisional conflict about the screening decision compared with the controls (51% v 38%; P=0.02). The groups did not differ for general anxiety or worry about bowel cancer. Conclusions Tailored decision support information can be effective in supporting informed choices and greater involvement in decisions about faecal occult blood testing among adults with low levels of education, without increasing anxiety or worry about developing bowel cancer. Using a decision aid to make an informed choice may, however, lead to lower uptake of screening. Trial registration ClinicalTrials.gov NCT00765869 and Australian New Zealand Clinical Trials Registry 12608000011381.

Three questions that patients can ask to improve the quality of information physicians give about treatment options: A cross-over trial

OBJECTIVE To test the effect of three questions (what are my options? what are the benefits and harms? and how likely are these?), on information provided by physicians about treatment options. METHODS We used a cross-over trial using two unannounced standardized patients (SPs) simulating a presentation of mild-moderate depression. One SP was assigned the intervention role (asking the questions), the other the control role. An intervention and control SP visited each physician, order allocated randomly. The study was conducted in family practices in Sydney, Australia, during 2008-09. Data were obtained from consultation audio-recordings. Information about treatment options and patient involvement were analyzed using the Assessing Communication about Evidence and Patient Preferences (ACEPP) tool and the OPTION tool. RESULTS Thirty-six SP visits were completed (18 intervention, 18 control). Scores were higher in intervention consultations than controls: ACEPP scores 21.4 vs. 16.6, p<0.001, difference 4.7 (95% CI 2.3-7.0) and OPTION scores 36 vs. 25, p=0.001, difference 11.5 (95% CI 5.1-17.8), indicating greater information provision and behavior supporting patient involvement. CONCLUSION Asking these three questions improved information given by family physicians and increased physician facilitation of patient involvement. Practice implications. These questions can drive evidence-based practice, strengthen patient-physician communication, and improve safety and quality.

Communicating about screening

Informed choice is important for screening, but not everyone wants or is able to analyse research data. Vikki Entwistle and colleagues propose a new approach to communication

Use of decision aids to support informed choices about screening

Decisions about screening can be more complex than those about treatment. Well designed decision aids could help patients understand the risks as well as the benefits

Randomized trial of a self-administered decision aid for colorectal cancer screening:

Objective Previous studies have not assessed whether evidence-based information about the outcomes of colorectal cancer screening increases informed choice among people from a range of socioeconomic backgrounds nor have they assessed whether this can be administered away from a health-care provider. Methods Randomized controlled trial in six primary care locations. Three hundred and fourteen people aged 50–74 years received a self-administered decision aid (DA) booklet about outcomes of biennial faecal occult blood testing (FOBT) screening or government consumer guidelines (G). Results Significantly more DA recipients (20.9%) were ‘informed’ compared with G recipients (5.8%) (P = 0.0001, OR 4.32; 95% CI 2.49 to 7.52); the DA did not affect values clarity (61.9% clear after DA versus 59.1% after G) nor screening decisions overall (87.3% would screen after DA versus 90.5% after G). Test uptake at one month was uniformly low (5.2% DA versus 6.6% G); mostly due to being ‘too busy’. DA recipients were more likely to make decisions ‘integrating’ knowledge with values (10.4% DA versus 1.5% G). Decisions not to screen were equally uncommon in both groups but more likely to be uninformed in G (P = 0.03). More DA recipients from all education levels were ‘informed’ (P = 0.02), particularly in lower education (50.0% DA versus 17.8% G) and university-educated groups (79.4% DA versus 32.1% G). Conclusion Detailed absolute risk and benefit information about FOBT screening can be effectively used at home by people to increase informed choice. The DA was effective in people with lower education levels. Trial Registration Unique Protocol ID 211705 ClinicalTrials.gov ID NCT 00148226.

Are current psychometric tools suitable for measuring outcomes of diabetes education

Aims  To critically appraise the suitability, validity, reliability, feasibility and sensitivity to change of available psychometric tools for measuring the education outcomes identified in the (Australian) National Consensus on Outcomes and Indicators for Diabetes Patient Education.

The role of primary care in early detection and follow-up of cancer

Primary care providers have important roles across the cancer continuum, from encouraging screening and accurate diagnosis to providing care during and after treatment for both the cancer and any comorbid conditions. Evidence shows that higher cancer screening participation rates are associated with greater involvement of primary care. Primary care providers are pivotal in reducing diagnostic delay, particularly in health systems that have long waiting times for outpatient diagnostic services. However, so-called fast-track systems designed to speed up hospital referrals are weakened by significant variation in their use by general practitioners (GPs), and affect the associated conversion and detection rates. Several randomized controlled trials have shown primary care-led follow-up care to be equivalent to hospital-led care in terms of patient wellbeing, recurrence rates and survival, and might be less costly. For primary care-led follow-up to be successful, appropriate guidelines must be incorporated, clear communication must be provided and specialist care must be accessible if required. Finally, models of long-term cancer follow-up are needed that provide holistic care and incorporate management of co-morbid conditions. We discuss all these aspects of primary care, focusing on the most common cancers managed at the GP office—breast, colorectal, prostate, lung and cervical cancers.

Information needs and preferences of low and high literacy consumers for decisions about colorectal cancer screening: utilizing a linguistic model

Context  The use of written decision aids (DAs) in clinical practice has proliferated. However, few DAs have been developed for low literacy users, despite this group having low knowledge about healthcare and lacking involvement in health decisions.