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

Oncofertility CommunicationSharing Information and Building Relationships across Disciplines /

XIX, 237 p. 26 illus., 21 illus. in color.online

Autonomy-related behaviors of patient companions and their effect on decision-making activity in geriatric primary care visits

The objective of this study, undertaken in the USA, was to investigate the consequences of autonomy-related companion behaviors on patient decision-making activity during geriatric primary care visits. Videotapes were analyzed to characterize patient and companion decision-making activity and related companion behaviors. These behaviors were coded throughout the visit using an autonomy-based framework that included both autonomy enhancing (i.e. facilitating patient understanding, patient involvement, and doctor understanding) and detracting behaviors, (i.e. controlling the patient and building alliances with the physician). Patients (N=93) in this cross-sectional sample range in age from 65 to 95 years and are mostly white (n=73, 79%) and female (n=67, 72%). Companions are spouses (n=42, 46%), adult children (n=33, 36%), or other relatives and friends (n=15, 16%) of patients. Companions are active participants in medical visits and engage in more autonomy enhancing than detracting behaviors. Companions of sicker (compared with less sick) patients were more likely to facilitate patient understanding, pPatient-provider communication Geriatrics Autonomy Decision-making USA

Safety of community drinking-water and outbreaks of waterborne enteric disease: Israel, 1976-97

Waterborne disease remains a major public health problem in many countries. We report findings on nearly three decades of waterborne disease in Israel and the part these diseases play in the total national burden of enteric disease. During the 1970s and 1980s, Israel?s community water supplies were frequently of poor quality according to the microbiological standards at that time, and the country experienced many outbreaks of waterborne enteric disease. New regulations raised water quality standards and made chlorination of community water supplies mandatory, as well as imposing more stringent guidelines on maintaining water sources and distribution systems for both surface water and groundwater. This was followed by improved compliance and water quality, and a marked decline in the number of outbreaks of waterborne disease; no outbreaks were detected between 1992 and 1997. The incidence of waterborne salmonellosis, shigellosis, and typhoid declined markedly as proportions of the total burden of these diseases, but peaked during the time in which there were frequent outbreaks of waterborne disease (1980-85). Long-term trends in the total incidence of reported infectious enteric diseases from all sources, including typhoid, shigellosis, and viral hepatitis (all types) declined, while the total incidence of salmonellosis increased. Mandatory chlorination has had an important impact on improving water quality, in reducing outbreaks of waterborne disease in Israel, and reducing the total burden of enteric disease in the country

International Patient Decision Aid Standards Collaboration. Update of the IPDAS Collaboration Background Document. 2012 Updated Chapter J: Addressing Health Literacy (Original Title: Using Plain Language).

<br/

Oncologists\u27 Use of Patient Educational Materials about Cancer and Fertility Preservation

Background: This study sought to determine the prevalence of distribution of fertility preservation (FP) materials, source of the materials, and providers\u27 perceived relevance of the materials among a sample of US oncologists. Methods: A 53-item survey was administered via mail and the Web to a stratified sample of oncologists from the American Medical Association Masterfile. This study represents a subset of results, reporting on three survey items. Results: Among the 511 oncologists (32% response rate), only 13.5% (n = 69) reported ‘always or often’ giving their patients educational materials about FP. Among those who reported ever distributing materials, 39.5% used American Cancer Society materials, 11.0% used Fertile Hope, 6.4% used Lance Armstrong Foundation, and 11.8% used ‘other’. Among those who provided materials, only 27.4% believe the FP materials they provide are ‘relevant to patient\u27s specific cancer diagnosis’. Conclusion: There is need to improve oncologists\u27 distribution of FP educational materials to patients with cancer. Copyright © 2011 John Wiley & Sons, Ltd

Oncologists\u27 Use of Patient Educational Materials about Cancer and Fertility Preservation

Background: This study sought to determine the prevalence of distribution of fertility preservation (FP) materials, source of the materials, and providers\u27 perceived relevance of the materials among a sample of US oncologists. Methods: A 53-item survey was administered via mail and the Web to a stratified sample of oncologists from the American Medical Association Masterfile. This study represents a subset of results, reporting on three survey items. Results: Among the 511 oncologists (32% response rate), only 13.5% (n = 69) reported ‘always or often’ giving their patients educational materials about FP. Among those who reported ever distributing materials, 39.5% used American Cancer Society materials, 11.0% used Fertile Hope, 6.4% used Lance Armstrong Foundation, and 11.8% used ‘other’. Among those who provided materials, only 27.4% believe the FP materials they provide are ‘relevant to patient\u27s specific cancer diagnosis’. Conclusion: There is need to improve oncologists\u27 distribution of FP educational materials to patients with cancer. Copyright © 2011 John Wiley & Sons, Ltd

Shared decision-making as an existential journey: aiming for restored autonomous capacity.

OBJECTIVE: We describe the different ways in which illness represents an existential problem, and its implications for shared decision-making. METHODS: We explore core concepts of shared decision-making in medical encounters (uncertainty, vulnerability, dependency, autonomy, power, trust, responsibility) to interpret and explain existing results and propose a broader understanding of shared-decision making for future studies. RESULTS: Existential aspects of being are physical, social, psychological, and spiritual. Uncertainty and vulnerability caused by illness expose these aspects and may lead to dependency on the provider, which underscores that autonomy is not just an individual status, but also a varying capacity, relational of nature. In shared decision-making, power and trust are important factors that may increase as well as decrease the patient\u27s dependency, particularly as information overload may increase uncertainty. CONCLUSION: The fundamental uncertainty, state of vulnerability, and lack of power of the ill patient, imbue shared decision-making with a deeper existential significance and call for greater attention to the emotional and relational dimensions of care. Hence, we propose that the aim of shared decision-making should be restoration of the patient\u27s autonomous capacity. PRACTICE IMPLICATIONS: In doing shared decision-making, care is needed to encompass existential aspects; informing and exploring preferences is not enough