Sian K. Smith

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.

Addressing health literacy in patient decision aids.

BackgroundEffective use of a patient decision aid (PtDA) can be affected by the user’s health literacy and the PtDA’s characteristics. Systematic reviews of the relevant literature can guide PtDA developers to attend to the health literacy needs of patients. The reviews reported here aimed to assess:1. a) the effects of health literacy / numeracy on selected decision-making outcomes, and b) the effects of interventions designed to mitigate the influence of lower health literacy on decision-making outcomes, and2. the extent to which existing PtDAs a) account for health literacy, and b) are tested in lower health literacy populations.MethodsWe reviewed literature for evidence relevant to these two aims. When high-quality systematic reviews existed, we summarized their evidence. When reviews were unavailable, we conducted our own systematic reviews.ResultsAim 1: In an existing systematic review of PtDA trials, lower health literacy was associated with lower patient health knowledge (14 of 16 eligible studies). Fourteen studies reported practical design strategies to improve knowledge for lower health literacy patients. In our own systematic review, no studies reported on values clarity per se, but in 2 lower health literacy was related to higher decisional uncertainty and regret. Lower health literacy was associated with less desire for involvement in 3 studies, less question-asking in 2, and less patient-centered communication in 4 studies; its effects on other measures of patient involvement were mixed. Only one study assessed the effects of a health literacy intervention on outcomes; it showed that using video to improve the salience of health states reduced decisional uncertainty. Aim 2: In our review of 97 trials, only 3 PtDAs overtly addressed the needs of lower health literacy users. In 90% of trials, user health literacy and readability of the PtDA were not reported. However, increases in knowledge and informed choice were reported in those studies in which health literacy needs were addressed.ConclusionLower health literacy affects key decision-making outcomes, but few existing PtDAs have addressed the needs of lower health literacy users. The specific effects of PtDAs designed to mitigate the influence of low health literacy are unknown. More attention to the needs of patients with lower health literacy is indicated, to ensure that PtDAs are appropriate for lower as well as higher health literacy patients.

The Challenge of Shared Decision Making Among Patients With Lower Literacy: A Framework for Research and Development

There have been major advances in techniques to increase patient involvement in health decisions with the benefits of greater involvement and shared decision making now widely recognized. However, there has been little attention in the development of tools and strategies to support patient participation among adults with lower literacy, a group with poor health knowledge, limited involvement in health decisions, and poor health outcomes. The authors put forward a framework to consider the different stages of shared health decision making and the tasks and skills required to achieve each stage. They consider where current research exists in the decision making literature and where more is needed if adults with limited literacy are to be better engaged in shared decision making in health care.

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.

The Influence of Graphic Display Format on the Interpretations of Quantitative Risk Information among Adults with Lower Education and Literacy A Randomized Experimental Study

Objective To test optimal graphic risk communication formats for presenting small probabilities using graphics with a denominator of 1000 to adults with lower education and literacy. Methods A randomized experimental study, which took place in adult basic education classes in Sydney, Australia. The participants were 120 adults with lower education and literacy. An experimental computer-based manipulation compared 1) pictographs in 2 forms, shaded “blocks” and unshaded “dots”; and 2) bar charts across different orientations (horizontal/vertical) and numerator size (small <100, medium 100–499, large 500–999). Accuracy (size of error) and ease of processing (reaction time) were assessed on a gist task (estimating the larger chance of survival) and a verbatim task (estimating the size of difference). Preferences for different graph types were also assessed. Results Accuracy on the gist task was very high across all conditions (>95%) and not tested further. For the verbatim task, optimal graph type depended on the numerator size. For small numerators, pictographs resulted in fewer errors than bar charts (blocks: odds ratio [OR] = 0.047, 95% confidence interval [CI] = 0.023–0.098; dots: OR = 0.049, 95% CI = 0.024–0.099). For medium and large numerators, bar charts were more accurate (e.g., medium dots: OR = 4.29, 95% CI = 2.9–6.35). Pictographs were generally processed faster for small numerators (e.g., blocks: 14.9 seconds v. bars: 16.2 seconds) and bar charts for medium or large numerators (e.g., large blocks: 41.6 seconds v. 26.7 seconds). Vertical formats were processed slightly faster than horizontal graphs with no difference in accuracy. Most participants preferred bar charts (64%); however, there was no relationship with performance. Conclusions For adults with low education and literacy, pictographs are likely to be the best format to use when displaying small numerators (<100/1000) and bar charts for larger numerators (>100/1000).

Insights into the concept and measurement of health literacy from a study of shared decision-making in a low literacy population

This article explores the concept and measurement of health literacy in the context of shared health decision-making. It draws upon a series of qualitative and quantitative studies undertaken in the development and evaluation of a bowel cancer screening decision aid for low literacy populations. The findings indicate that different types of health literacy (functional, interactive and critical) are required in decision-making and present a set of instruments to assess and discriminate between higher level health literacy skills required for engagement in decision-making. It concludes that greater sophistication in both the definition and measurement of health literacy in research is needed.

Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy.

OBJECTIVE Several countries have recently implemented national bowel cancer screening programs. To ensure equal access to screening, information is needed to suit adults ranging in literacy level. Decision aids are effective in providing balanced information and have been applied in screening. However, few have been designed for populations with lower education and literacy. This article describes the development and preliminary evaluation of a bowel cancer screening decision aid for this group. METHOD We conducted face-to-face interviews with adults of varying literacy ability, to develop the decision aid (Stage 1). We applied principles of plain language, created visual illustrations to support key textual messages, and used colour coding to direct the reader through the booklet. We then explored its acceptability and comprehension among consumers with higher and lower education (Stage 2). Participants were recruited from a community sample with lower education and a university alumni network. RESULTS A total of 75 participants were interviewed, 43 with lower educational attainment and 32 with university education. The decision aid was positively reviewed by both education groups. Results highlighted the need to clarify the purpose of the decision aid and the availability of choice in the context of screening, especially to those with lower education. CONCLUSION The 2 stage iterative development process identified important factors to consider in the development of decision tools for this target group, and is recommended. PRACTICE IMPLICATIONS Our findings have implications for how to support people with lower education and literacy make informed screening decisions.

The Hepatitis C treatment experience: Patients’ perceptions of the facilitators of and barriers to uptake, adherence and completion

Objective: This study explores the perceptions of patients receiving treatment for Hepatitis C to determine what factors influence their decision to commence treatment, ability to maintain adherence and complete their treatment program. Design: Semi-structured interview techniques were used in a qualitative study of 20 patients undergoing treatment for Chronic Hepatitis C (CHC). Main outcome measures: To explore patients’ perceived barriers and facilitators of Hepatitis C treatment adherence and completion. Results: Analysis of patient interviews identified four key themes: (1) motivations for commencing CHC treatment – fear of death and ridding themselves of stigma and shame; (2) the influential role of provider communication – patients reported that information and feedback that was personalised to their needs and lifestyles was the most effective for improving adherence to treatment; (3) facilitators of treatment adherence and completion – social, emotional and practical support improved adherence and completion, as did temporarily ceasing employment; (4) barriers to treatment adherence and completion – these included side effects, stigma, a complicated dosing schedule and limitations of the public healthcare system. Conclusion: To increase treatment adherence and completion rates, a patient-centred approach is required that addresses patients’ social, practical, and emotional support needs and adaptive coping strategies.

Factors Associated with Informed Decisions and Participation in Bowel Cancer Screening among Adults with Lower Education and Literacy

Background . Making informed decisions about cancer screening involves understanding the benefits and harms in conjunction with personal values. There is little research examining factors associated with informed decision making or participation in screening in the context of a decision aid trial. Objectives . To identify factors associated with informed choice and participation in fecal occult blood testing (FOBT) among lower education populations. Design . Randomized controlled trial of an FOBT decision aid conducted between July and November 2008. Setting . Socioeconomically disadvantaged areas in New South Wales, Australia. Participants . Included 572 adults aged 55 to 64 years with lower education. Measurements . Sociodemographic variables, perceived health literacy, and involvement preferences in decision making were examined to identify predictors of informed choice (knowledge, attitudes, and behavior). Results . Multivariate analysis identified independent predictors of making an informed choice as having higher education (relative risk [RR], 1.49; 95% confidence interval [CI], 1.13–1.95; P = 0.001), receiving the decision aid (RR, 2.88; 95% CI, 1.87–4.44; P < 0.001), and being male (RR, 1.48; 95% CI, 1.11–1.97; P = 0.009). Participants with no confidence in completing forms and poorer self-reported health were less likely to make an informed choice (RR, 0.74; 95% CI, 0.53–1.03; P = 0.05 and RR, 0.57; 95% CI, 0.36–0.89; P = 0.007, respectively). Independent predictors of completing the FOBT were positive screening attitudes, receiving the standard information, preference for making the decision alone, and knowing that screening may lead to false-positive/negative results. Limitations . We did not objectively measure health literacy. Conclusions . Participants with the lowest levels of education had greater difficulties making an informed choice about participation in bowel screening. Alternative methods are needed to support informed decision making among lower education populations.

Health literacy and the social determinants of health: a qualitative model from adult learners

Summary Health literacy, ‘the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health’, is key to improving peoples’ control over modifiable social determinants of health (SDH). This study listened to adult learners to understand their perspectives on gathering, understanding and using information for health. This qualitative project recruited participants from community skills courses to identify relevant ‘health information’ factors. Subsequently different learners put these together to develop a model of their ‘Journey to health’. Twenty-seven participants were recruited; twenty from community health literacy courses and seven from an adult basic literacy and numeracy course. Participants described health as a ‘journey’ starting from an individuals family, ethnicity and culture. Basic (functional) health literacy skills were needed to gather and understand information. More complex interactive health literacy skills were needed to evaluate the importance and relevance of information in context, and make health decisions. Critical health literacy skills could be used to adapt negative external factors that might inhibit health-promotion. Our model is an iterative linear one moving from ethnicity, community and culture, through lifestyle, to health, with learning revisited in the context of different sources of support. It builds on existing models by highlighting the importance of SDH in the translation of new health knowledge into healthy behaviours, and the importance of health literacy in enabling people to overcome barriers to health.