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

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

Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer

Background: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. Methods: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. Results: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. Conclusions: Future work is needed to determine SWs’/chaplains’ contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains