How lay people understand and make sense of personalized disease risk information.

BACKGROUND: Disease risk calculators are increasingly web-based, but previous studies have shown that risk information often poses problems for lay users. OBJECTIVE: To examine how lay people understand the result derived from an online cardiometabolic risk calculator. DESIGN: A qualitative study was performed, using the risk calculator in the Dutch National Prevention Program for cardiometabolic diseases. The study consisted of three parts: (i) attention: completion of the risk calculator while an eye tracker registered eye movements; (ii) recall: completion of a recall task; and (iii) interpretation: participation in a semi-structured interview. SETTING AND PARTICIPANTS: We recruited people from the target population through an advertisement in a local newspaper; 16 people participated in the study, which took place in our university laboratory. RESULTS: Eye-tracking data showed that participants looked most extensively at numerical risk information. Percentages were recalled well, whereas natural frequencies and verbal labels were remembered less well. Five qualitative themes were derived from the interview data: (i) numerical information does not really sink in; (ii) the verbal categorical label made no real impact on people; (iii) people relied heavily on existing knowledge and beliefs; (iv) people zoomed in on risk factors, especially family history of diseases; and (v) people often compared their situation to that of their peers. DISCUSSION AND CONCLUSION: Although people paid attention to and recalled the risk information to a certain extent, they seemed to have difficulty in properly using this information for interpreting their risk.

Wanting to attend isn't just wanting to quit: why some disadvantaged smokers regularly attend smoking cessation behavioural therapy while others do not: a qualitative study.

BACKGROUND: Attendance of a behavioural support programme facilitates smoking cessation. Disadvantaged smokers have been shown to attend less than their more affluent peers. We need to gain in-depth insight into underlying reasons for differing attendance behaviour in disadvantaged smokers, to better address this issue. This study aims to explore the underlying motivations, barriers and social support of smokers exhibiting different patterns of attendance at a free smoking cessation behavioural support programme in a disadvantaged neighbourhood of The Netherlands. METHODS: In 29 smokers undertaking smoking cessation group therapy or telephone counselling in a disadvantaged neighbourhood, qualitative interviews were completed, coded and analysed. Major themes were motivations, barriers to attend and social support. Motivations and social support were analysed with reference to the self-determination theory. RESULTS: Two distinct patterns of attendance emerged: those who missed up to two sessions ("frequent attenders"), and those who missed more than two sessions ("infrequent attenders"). The groups differed in their motivations to attend, barriers to attendance, and in the level of social support they received. In comparison with the infrequent attenders, frequent attenders more often had intrinsic motivation to attend (e.g. enjoyed attending), and named more self-determined extrinsic motivations to attend, such as commitment to attendance and wanting to quit. Most of those mentioning intrinsic motivation did not mention a desire to quit as a motivation for attendance. No organizational barriers to attendance were mentioned by frequent attenders, such as misunderstandings around details of appointments. Frequent attenders experienced more social support within and outside the course. CONCLUSION: Motivation to attend behavioural support, as distinct from motivation to quit smoking, is an important factor in attendance of smoking cessation courses in disadvantaged areas. Some focus on increasing motivation to attend may help to prevent participants missing sessions.

Barriers in using cardiometabolic risk information among consumers with low health literacy.

OBJECTIVES: To identify the barriers from the perspective of consumers with low health literacy in using risk information as provided in cardiometabolic risk assessments. DESIGN: A qualitative thematic approach using cognitive interviews was employed. METHODS: We performed interviews with 23 people with low health literacy/health numeracy, who were recruited through (1) several organisations and snowball sampling and (2) an online access panel. Participants completed the risk test of the Dutch national cardiometabolic risk assessment and viewed the personalized information about their risk. They were asked to answer probing questions about different parts of the information. The qualitative data were analysed by identifying main themes related to barriers in using the information, using a descriptive thematic approach. RESULTS: The four main themes identified were as follows: (1) People did not fully accept the risk message, partly because numerical information had ambiguous meaning; (2) people lacked an adequate framework for understanding their risk; (3) the purpose and setting of the risk assessment was unclear; and (4) current information tells nothing new: A need for more specific risk information. CONCLUSIONS: The main barriers were that the current presentation seemed to provoke undervaluation of the risk number and that texts throughout the test, for example about cardiometabolic diseases, did not match people's existing knowledge, failing to provide an adequate framework for understanding cardiometabolic risk. Our findings have implications for the design of disease risk information, for example that alternative forms of communication should be explored that provide more intuitive meaning of the risk in terms of good versus bad. STATEMENT OF CONTRIBUTION: What is already known on this subject? Online disease risk assessments have become widely available internationally. People with low SES and health literacy tend to participate less in health screening. Risk information is difficult to understand, yet little research has been carried out among people with low health literacy. What does this study add? People with low health literacy do not optimally use risk information in an online cardiometabolic risk assessment. The texts provided in the cardiometabolic risk assessment do not suit to their existing knowledge. The typical risk communication (numbers, bar graph, verbal label) seems to provoke undervaluation of risk.