How lay people understand and make sense of personalized disease risk information.
ABSTRACT: Disease risk calculators are increasingly web-based, but previous studies have shown that risk information often poses problems for lay users.To examine how lay people understand the result derived from an online cardiometabolic risk calculator.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.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.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.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.
Project description:In a recent article, Leigh (J Bone Joint Surg [Br] 88-B:16-18, 2006) notes that patients do not lay down memory when being counselled as to the risks involved in prospective surgery. In our article we focused on the patients' recall of risk factors involved in elective spinal surgery. We assessed the influence of written information provided to the patients during the consenting process on their recall of operative risks. The study was a prospective randomised study. All patients having elective spinal surgery were included in our study from February 2006 to November 2006 as a consecutive series. Patients were randomised into two groups, one of which received routine consent with verbal explanations (group 1), the other received the same information supplemented by a written sheet explaining the risks of the surgery (group 2). Two weeks later we assessed patients' recall of the risk involved in the surgery with a questionnaire and compared both groups with a Student t-test. Fifty-three patients (twenty in group 1 and twenty three in group 2) were involved. We noted a significant difference between the two groups in terms of mean number of risks recalled and number of patients recalling each risk (p<0.001 and p<0.005, respectively). The addition of a written sheet given to patients during the consenting process makes a significant difference in terms of their recall of the surgical risks in elective lumbar spine surgery. We advocate the routine use of written booklets during the consenting process.
Project description:While some studies have assessed patient recall of important information from ambulatory care visits, none has done so recently. Furthermore, little is known about features of clinical interactions which are associated with patient understanding and recall, without which shared decision making, a widely shared ideal for patient care, cannot occur. Our objective was to evaluate characteristics of patients and outpatient encounters associated with patient recall of information after one week, along with observation of elements of shared decision making. This was an observational study based on coded transcripts of 189 outpatient encounters, and post-visit interviews with patients 1 week later. Coding used three previously validated systems, adopted for this study. Forty-nine percent of decisions and recommendations were recalled accurately without prompting; 36% recalled with a prompt; 15% recalled erroneously or not at all. Provider behaviors hypothesized to be associated with patient recall, such as open-questioning and "teach back," were rare. Patients with less than high school education recalled 38% of items freely and accurately, while patients with a college degree recalled 65% (p < .0001). In a multivariate model, the total number of items to be recalled per visit, and percentage of utterances in decision-making processes by the provider ("verbal dominance"), were significant predictors of poorer recall. The item count was associated with poorer recall for lower, but not higher, educated patients.
Project description:Cardiometabolic risk factors influence white matter hyperintensity (WMH) development: in metabolic syndrome (MetS), higher WMH load is often reported but the relationships between specific cardiometabolic variables, WMH load and cognitive performance are uncertain. We investigated these in a Brazilian sample (aged 50-85) with (N = 61) and without (N = 103) MetS. Stepwise regression models identified effects of cardiometabolic and demographic variables on WMH load (from FLAIR MRI) and verbal recall performance. WMH volume was greater in MetS, but verbal recall performance was not impaired. Age showed the strongest relationship with WMH load. Across all participants, systolic blood pressure (SBP) and fasting blood glucose were also contributors, and WMH volume was negatively associated with verbal recall performance. In non-MetS, higher HbA1c, SBP, and number of MetS components were linked to poorer recall performance while higher triglyceride levels appeared to be protective. In MetS only, these relationships were absent but education exerted a strongly protective effect on recall performance. Thus, results support MetS as a construct: the clustering of cardiometabolic variables in MetS alters their individual relationships with cognition; instead, MetS is characterised by a greater reliance on cognitive reserve mechanisms. In non-MetS, strategies to control HbA1c and SBP should be prioritised as these have the largest impact on cognition.
Project description:Data were obtained through a multisite clinical trial in which different types of genetic risk-related information were disclosed to individuals (n = 246) seeking a risk assessment for Alzheimer's disease.Six weeks after disclosure, 83% of participants correctly recalled the number of risk-increasing APOE alleles they possessed, and 74% correctly recalled their APOE genotype. While 84% of participants recalled their lifetime risk estimate to within 5 percentage points, only 51% correctly recalled their lifetime risk estimate exactly. Correct recall of the number of APOE risk-increasing alleles was independently associated with higher education (p < 0.001), greater numeracy (p < 0.05) and stronger family history of Alzheimer's disease (p < 0.05). Before adjustments for confounding, correct recall of APOE genotype was also associated with higher education, greater numeracy and stronger family history of Alzheimer's disease, as well as with higher comfort with numbers and European American ethnicity (all p < 0.05). Correct recall of the lifetime risk estimate was independently associated only with younger age (p < 0.05).Recall of genotype-specific information is high, but recall of exact risk estimates is lower. Incorrect recall of numeric risk may lead to distortions in understanding risk. Further research is needed to determine how best to communicate different types of genetic risk information to patients, particularly to those with lower educational levels and lower numeracy. Health-care professionals should be aware that each type of genetic risk information may be differentially interpreted and retained by patients and that some patient subgroups may have more problems with recall than others.
Project description:BACKGROUND:Breast and cervical cancer are leading causes of cancer burden in Sub-Saharan Africa (SSA). We measured breast and cervical cancer symptom and risk factor awareness and lay beliefs in Uganda and South Africa (SA). METHODS:Between August and December 2018 we conducted a cross-sectional survey of women ?18 years in one urban and one rural site per country. Households were selected using systematic random sampling, then one woman per household randomly selected to participate. Data were collected by interviewers using electronic tablets customised with the locally validated African Women Awareness of Cancer (AWACAN) tool. This has unprompted questions (testing recall) followed by prompted questions (testing recognition) on risk factor, symptom awareness and lay beliefs for breast and cervical cancer. Mann Whitney and Kruskal Wallis tests were used to compare the association between socio-demographic variables and outcomes. Poisson regression with robust variance was conducted to identify independent socio-demographic predictors. RESULTS:Of the 1758 women interviewed, 90.8% had heard of breast and 89.4% of cervical cancer. 8.7% recalled at least one breast risk factor and 38.1% recalled at least one cervical cancer risk factor. 78.0% and 57.7% recalled at least one breast/cervical cancer symptom respectively. Recognition of risk factors and symptoms was higher than recall. Many women were unaware that HPV, HIV, and not being screened were cervical cancer risk factors (23.7%, 46.8%, 26.5% respectively). In SA, urban compared to rural women had significantly higher symptom and risk factor awareness for both cancers. In Uganda married women/living with a partner had higher awareness of breast cancer risk factors and cervical cancer symptoms compared to women not living with a partner. Women mentioned several lay beliefs (e.g. putting money in their bra as a breast cancer risk factor). CONCLUSION:We identified gaps in breast and cervical cancer symptom and risk factor awareness. Our results provide direction for locally targeted cancer awareness intervention programs and serve as a baseline measure against which to evaluate interventions in SSA.
Project description:LAY ABSTRACT:During many types of interviews (e.g. in employment, with the police, and in healthcare), we need to recall detailed memories of specific events, which can be difficult for autistic people in response to commonly used questions. This is especially because these tend to be open questions (i.e. very broad). Autistic people have disproportionately high rates of physical and mental health conditions, are more likely to interact with police, and are the most underemployed disability group. However, interviewers are often unsure about how to adapt their communication for autistic people.Our research tested whether different types of prompts enabled autistic people to recall specific memories (memories of a single event within one day). Participants were asked about situations relating to witnessing a crime (e.g. at the bank), physical or mental health scenarios and employment interviews (e.g. a time you've met a deadline).We tested the following:Open questions: basic questions only (e.g. 'tell me about a time you went to the cinema'),Semantic prompting: a general prompt (e.g. 'do you enjoy going to the cinema?') before asking for a specific instance ('tell me about a time you went to the cinema?'),Visual-verbal prompting: asking participants to recall when it happened, who was there, the actions that occurred, the setting, and any objects.With visual-verbal prompting, autistic and typically developing participants' memories were more specific and detailed. Semantic prompting was also effective for employment questions. Our study shows that autistic people can recall specific memories when they are appropriately prompted. Visual-verbal prompting may be effective across different situations.
Project description:LAY ABSTRACT:Autistic people may be more likely to be interviewed by police as a victim/witness, yet they experience social communication difficulties alongside specific memory difficulties that can impact their ability to recall information from memory. Police interviewing techniques do not take account of these differences, and so are often ineffective. We developed a new technique for interviewing autistic witnesses, referred to a Witness-Aimed First Account, which was designed to better support differences in the way that autistic witnesses process information in memory. The Witness-Aimed First Account technique encourages witnesses to first segment the witnessed event into discrete, parameter-bound event topics, which are then displayed on post-it notes while the witness goes onto freely recall as much information as they can from within each parameter-bound topic in turn. Since witnessed events are rarely cohesive stories with a logical chain of events, we also explored autistic and non-autistic witnesses' recall when the events were witnessed in a random (nonsensical) order. Thirty-three autistic and 30 typically developing participants were interviewed about their memory for two videos depicting criminal events. Clip segments of one video were 'scrambled', disrupting the event's narrative structure; the other video was watched intact. Although both autistic and non-autistic witnesses recalled fewer details with less accuracy from the scrambled video, Witness-Aimed First Account interviews resulted in more detailed and accurate recall from both autistic and non-autistic witnesses, for both scrambled and unscrambled videos. The Witness-Aimed First Account technique may be a useful tool to improve witnesses' accounts within a legally appropriate, non-leading framework.
Project description:Contextual information is used to support and organize episodic memory. Prior research has reliably shown memory deficits in psychosis; however, little research has characterized how this population uses contextual information during memory recall. We employed an approach founded in a computational framework of free recall to quantify how individuals with first episode of psychosis (FEP, N?=?97) and controls (CON, N?=?55) use temporal and semantic context to organize memory recall. Free recall was characterized using the Hopkins Verbal Learning Test-Revised (HVLT-R). We compared FEP and CON on three measures of free recall: proportion recalled, temporal clustering, and semantic clustering. Measures of temporal/semantic clustering quantified how individuals use contextual information to organize memory recall. We also assessed to what extent these measures relate to antipsychotic use and differentiated between different types of psychosis. We also explored the relationship between these measures and intelligence. In comparison to CON, FEP had reduced recall and less temporal clustering during free recall (p?<?0.05, Bonferroni-corrected), and showed a trend towards greater semantic clustering (p?=?0.10, Bonferroni-corrected). Within FEP, antipsychotic use and diagnoses did not differentiate between free recall accuracy or contextual organization of memory. IQ was related to free recall accuracy, but not the use of contextual information during recall in either group (p?<?0.05, Bonferroni-corrected). These results show that in addition to deficits in memory recall, FEP differed in how they organize memories compared to CON.
Project description:Immersion in chest-deep water may augment explicit memory in healthy adults however, there is limited information on how this environment might affect implicit memory or motor learning. The purpose of this study was to compare the speed and accuracy for learning a motor skill on land and in chest-deep water. Verbal word recall and grip strength were included to gain a more complete understanding of the intervention. Sixty-two younger adults (age = 23.3 ± 3.59 yrs.) were randomly assigned to either a water group immersed to the xiphoid or a land group. Participants in both groups completed the same eight practice trials of a mirror-drawing task on two separate days. Outcome measures for this task included time and error numbers to complete each drawing. The number of words recalled using a 12 word recall test, and peak grip strength using a hand dynamometer were measured each day of testing. The influence of environment and repeated practice on each outcome measure were assessed with an analysis of variance and effect sizes (ES). Time and errors for both groups significantly decreased with practice (p < 0.01, ES = 0.11-0.28), however the drawing time was greater in water than on land for trials 1, 5, and 6 (ES = 0.50-0.55). There was a 7% increase in words recalled (9.24 ± 1.19 vs 8.60 ± 1.19) and a 16% increase in grip strength (405 ± 104 vs 342 ± 83) for water than land groups (ES 0.54-0.64). Healthy adults in chest-deep water and on land display comparable mirror-drawing speed and accuracy after minimal practice. Curiously, water immersion may augment verbal word recall and grip strength abilities.
Project description:OBJECTIVE:The 2-year risk of psychosis in persons who meet research criteria for a high-risk syndrome is about 15%-25%; improvements in risk prediction accuracy would benefit the development and implementation of preventive interventions. The authors sought to assess polygenic risk score (PRS) prediction of subsequent psychosis in persons at high risk and to determine the impact of adding the PRS to a previously validated psychosis risk calculator. METHODS:Persons meeting research criteria for psychosis high risk (N=764) and unaffected individuals (N=279) were followed for up to 2 years. The PRS was based on the latest schizophrenia and bipolar genome-wide association studies. Variables in the psychosis risk calculator included stressful life events, trauma, disordered thought content, verbal learning, information processing speed, and family history of psychosis. RESULTS:For Europeans, the PRS varied significantly by group and was higher in the psychosis converter group compared with both the nonconverter and unaffected groups, but was similar for the nonconverter group compared with the unaffected group. For non-Europeans, the PRS varied significantly by group; the difference between the converters and nonconverters was not significant, but the PRS was significantly higher in converters than in unaffected individuals, and it did not differ between nonconverters and unaffected individuals. The R2liability (R2 adjusted for the rate of disease risk in the population being studied, here assuming a 2-year psychosis risk between 10% and 30%) for Europeans varied between 9.2% and 12.3% and for non-Europeans between 3.5% and 4.8%. The amount of risk prediction information contributed by the addition of the PRS to the risk calculator was less than severity of disordered thoughts and similar to or greater than for other variables. For Europeans, the PRS was correlated with risk calculator variables of information processing speed and verbal memory. CONCLUSIONS:The PRS discriminates psychosis converters from nonconverters and modestly improves individualized psychosis risk prediction when added to a psychosis risk calculator. The schizophrenia PRS shows promise in enhancing risk prediction in persons at high risk for psychosis, although its potential utility is limited by poor performance in persons of non-European ancestry.