Using Multimedia Approaches to Communicate Probabilities in Patient Decision Aids for Low-Literacy Populations: Randomized Trial
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ABSTRACT:
DISEASE(S): Colorectal Cancer,Colorectal Neoplasms
PROVIDER: 2167563 | ecrin-mdr-crc |
REPOSITORIES: ECRIN MDR
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Project description:BackgroundSelf-administration of patient-reported outcomes measures (PROMs) by patients with low literacy is a methodologic and implementation challenge. There is an increasing emphasis on patient-centered care and wider adoption of PROMs to understand outcomes and measure healthcare quality. However, there is a risk that the use of PROMs could perpetuate health disparities unless they are implemented in an inclusive fashion. We present a protocol to adapt validated, text-based PROMs to a multimedia format (mPROMs) to optimize self-administration in populations with limited literacy. We describe the processes used to develop the protocol and the planned protocol implementation.Methods/designOur study protocol development was guided by the International Quality of Life Assessment (IQOLA) protocol for translating and culturally adapting PROMs to different languages. We used the main components of IQOLA's protocol to generate a conceptual framework to guide development of a Multimedia Adaptation Protocol (MAP). The MAP, which incorporates human-centered design (HCD) and takes a community-engaged research approach, includes four stages: forward adaptation, backward adaptation, qualitative evaluation, and validation. The MAP employs qualitative and quantitative methods including observation, cognitive and discovery interviews, ideation workshops, prototyping, user testing, co-creation interviews, and psychometric testing. An iterative design is central to the MAP and consistent with both the IQOLA protocol and HCD processes. We will pilot test and execute the MAP to adapt the Patient Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Short Form for use in a mixed literacy hand and upper extremity patient population in Baltimore, Maryland.DiscussionThe MAP provides an approach for adapting PROMs to a multimedia format. We encourage others to evaluate and test this approach with other questionnaires and patient populations. The development and use of mPROMs has the potential to expand our ability to accurately capture PROs in limited literacy populations and promote equity in PRO measurement.
| S-EPMC8177453 | biostudies-literature
Project description:BackgroundInternational guidelines recommend the use of appropriate informed consent procedures in low literacy research settings because written information is not known to guarantee comprehension of study information.ObjectivesThis study developed and evaluated a multimedia informed consent tool for people with low literacy in an area where a malaria treatment trial was being planned in The Gambia.MethodsWe developed the informed consent document of the malaria treatment trial into a multimedia tool integrating video, animations and audio narrations in three major Gambian languages. Acceptability and ease of use of the multimedia tool were assessed using quantitative and qualitative methods. In two separate visits, the participants' comprehension of the study information was measured by using a validated digitised audio questionnaire.ResultsThe majority of participants (70%) reported that the multimedia tool was clear and easy to understand. Participants had high scores on the domains of adverse events/risk, voluntary participation, study procedures while lowest scores were recorded on the question items on randomisation. The differences in mean scores for participants' 'recall' and 'understanding' between first and second visits were statistically significant (F (1,41)=25.38, p<0.00001 and (F (1, 41) = 31.61, p<0.00001 respectively.ConclusionsOur locally developed multimedia tool was acceptable and easy to administer among low literacy participants in The Gambia. It also proved to be effective in delivering and sustaining comprehension of study information across a diverse group of participants. Additional research is needed to compare the tool to the traditional consent interview, both in The Gambia and in other sub-Saharan settings.
| S-EPMC4133653 | biostudies-literature
Project description: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: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.
| S-EPMC4042520 | biostudies-literature
Project description:BackgroundDrinking water and other sources for lead are the subject of public health concerns around the Flint, Michigan, drinking water and East Chicago, Indiana, lead in soil crises. In 2015, the U.S. Environmental Protection Agency (EPA)'s National Drinking Water Advisory Council (NDWAC) recommended establishment of a "health-based, household action level" for lead in drinking water based on children's exposure.ObjectivesThe primary objective was to develop a coupled exposure-dose modeling approach that can be used to determine what drinking water lead concentrations keep children's blood lead levels (BLLs) below specified values, considering exposures from water, soil, dust, food, and air. Related objectives were to evaluate the coupled model estimates using real-world blood lead data, to quantify relative contributions by the various media, and to identify key model inputs.MethodsA modeling approach using the EPA's Stochastic Human Exposure and Dose Simulation (SHEDS)-Multimedia and Integrated Exposure Uptake and Biokinetic (IEUBK) models was developed using available data. This analysis for the U.S. population of young children probabilistically simulated multimedia exposures and estimated relative contributions of media to BLLs across all population percentiles for several age groups.ResultsModeled BLLs compared well with nationally representative BLLs (0-23% relative error). Analyses revealed relative importance of soil and dust ingestion exposure pathways and associated Pb intake rates; water ingestion was also a main pathway, especially for infants.ConclusionsThis methodology advances scientific understanding of the relationship between lead concentrations in drinking water and BLLs in children. It can guide national health-based benchmarks for lead and related community public health decisions. https://doi.org/10.1289/EHP1605.
| S-EPMC5915183 | biostudies-literature
Project description:The goal of this study is to compare changes in gene expression between young (5 days old) and old (45 days old) flies posterior midguts.
2016-12-18 | GSE74171 | GEO
Project description:Participation in the decision-making process and health literacy may both affect health outcomes; data on how these factors are related among diverse groups are limited. This study examined the relationship between health literacy and decision-making preferences in a medically underserved population.We analyzed a sample of 576 primary care patients. Multivariable logistic regression was used to examine the independent association of health literacy (measured by the Rapid Estimate of Adult Literacy in Medicine-Revised) and patients' decision-making preferences (physician directed or patient involved), controlling for age, race/ethnicity, and gender. We tested whether having a regular doctor modified this association.Adequate health literacy (odds ratio [OR] = 1.7;P= 0.009) was significantly associated with preferring patient-involved decision making, controlling for age, race/ethnicity, and gender. Having a regular doctor did not modify this relationship. Males were significantly less likely to prefer patient-involved decision making (OR = 0.65;P= 0.024).Findings suggest health literacy affects decision-making preferences in medically underserved patients. More research is needed on how factors, such as patient knowledge or confidence, may influence decision-making preferences, particularly for those with limited health literacy.
| S-EPMC5546799 | biostudies-other
Project description:BackgroundStable angina patients have difficulty understanding the tradeoffs between treatment alternatives. In this analysis, we assessed treatment planning conversations for stable angina to determine whether inadequate health literacy acts as a barrier to communication that may partially explain this difficulty.MethodsWe conducted a descriptive analysis of patient questionnaire data from the PCI Choice Trial. The main outcomes were the responses to the Decisional Conflict Scale and the proportion of correct responses to knowledge questions about stable angina. We also conducted a qualitative analysis on recordings of patient-clinician discussions about treatment planning. The recordings were coded with the OPTION12 instrument for shared decision-making. Two analysts independently assessed the number and types of patient questions and expressions of preferences.ResultsPatient engagement did not differ by health literacy level and was generally low for all patients with respect to OPTION12 scores and the number of questions related to clinical aspects of treatment. Patients with inadequate health literacy had significantly higher decisional conflict. However, the proportion of knowledge questions answered correctly did not differ significantly by health literacy level.ConclusionsPatients with inadequate health literacy had greater decisional conflict but no difference in knowledge compared to patients with adequate health literacy. Inadequate health literacy may act as a barrier to communication, but gaps were found in patient engagement and knowledge for patients of all health literacy levels. The recorded patient-clinician encounters and the health literacy measure were valuable resources for conducting research on care delivery.
| S-EPMC6688543 | biostudies-literature
Project description:Decision aids (DAs) are central to shared decision making (SDM) interventions, yet little is known about patients' actual DA use. Adequate utilization of DAs could optimize SDM effectiveness. Electronic DAs enable more objective tracking and analysis of actual DA utilization than do paper DAs. This report is part of an ongoing randomized controlled SDM trial enrolling adolescents with type 1 diabetes and their caregivers (n = 153) who were considering use of an insulin pump or continuous glucose monitor. Extensive stakeholder engagement guided creation of two online DAs. After completing baseline measures, 133 dyads were randomized to SDM (access to the pertinent DA) or Usual Care (clinic routines for preparing candidates for adopting these devices). Utilization data showed that 80% of caregivers and 66% of youths logged into a DA at least once; youths and caregivers, respectively, dedicated a mean of 44.7 and 55.0 minutes to website use and viewed 72.2% and 77.4% of the DA content. Median total duration from enrollment to last DA logout was 48.2 days for adolescents and 45.6 days for caregivers. Bivariate comparisons showed that non-Hispanic, Caucasian females from households with higher socioeconomic status were significantly more likely to login to the assigned DA at least once. Hierarchical multiple regression showed that adolescent males with lower levels of health literacy demonstrated fewer DA logins (F = 2.59; P < 0.009), but identified no significant predictors of adolescents' or caregiver' duration of DA use or proportion of DA content viewed. Future SDM trials should seek to promote DA use, especially by non-White adolescents, perhaps with direct assistance with the initial DA login. Trials employing electronic DAs should routinely report and analyze utilization data.
| S-EPMC6157427 | biostudies-literature
Project description:The goal of this research study is to test the first version of a website that will offer information and support for adolescents and young adults with FAP. Researchers want to see if the website will be helpful, easy to understand, and easy to use for young patients with FAP.
| 2043922 | ecrin-mdr-crc
Project description:Background/objectivesDecision making in financial and healthcare matters is of critical importance for well-being in old age. Preliminary work suggests racial differences in decision making; however, the factors that drive racial differences in decision making remain unclear. We hypothesized literacy, particularly financial and health literacy, mediates racial differences in decision making.DesignCommunity-based epidemiologic cohort study.SettingCommunities in northeastern Illinois.ParticipantsNondemented Black participants (N = 138) of the Rush Alzheimer's Disease Center Minority Aging Research Study and the Rush Memory and Aging Project who completed decision-making and literacy measures were matched to White participants (N = 138) according to age, education, sex, and global cognition using Mahalanobis distance (total N = 276).MeasurementsAll participants completed clinical assessments, a decision-making measure that resembles real-world materials relevant to finance and healthcare, and a financial and health literacy measure. Regression models were used to examine racial differences in decision making and test the hypothesis that literacy mediates this association. In secondary analyses, we examined the impact of literacy in specific domains of decision making (financial and healthcare).ResultsIn models adjusted for age, education, sex, and global cognition, older Black adults performed lower than older White adults on literacy (β = -8.20; SE = 1.34; 95% CI = -10.82 to -5.57; P < .01) and separately on decision making (β = -.80; SE = .23; 95% CI = -1.25 to -.34; P < .01). However, when decision making was regressed on both race and literacy, the association of race was attenuated and became nonsignificant (β = -.45; SE = .24; 95% CI = -.93 to .02; P = .06), but literacy remained significantly associated with decision making (β = .04; SE = .01; 95% CI = .02-.06; P < .01). In secondary models, a similar pattern was observed for both financial and healthcare decision making.ConclusionsRacial differences in decision making are largely mediated by literacy. These findings suggest that efforts to improve literacy may help reduce racial differences in decision making and improve health and well-being for diverse populations. J Am Geriatr Soc 68:1279-1285, 2020.
| S-EPMC8324307 | biostudies-literature