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Importance: Complex and ineffective health communication is a critical source of health inequity and occurs despite repeated policy directives to provide health information that is easy to understand and applies health literacy principles., Objective: To evaluate the effectiveness of the Sydney Health Literacy Lab Health Literacy Editor, an easy-to-use online plain language tool that supports health information providers to apply health literacy guidelines to written health information., Design, Setting, and Participants: This randomized clinical trial, conducted online in Australia from May 2023 to February 2024, included a convenience sample of health information providers with no previous experience using the Health Literacy Editor. Analysts were blinded to study group., Intervention: Participants were randomized 1:1 to the intervention or control group. Participants in the intervention group were provided access to the Health Literacy Editor and a 30-minute online training program prior to editing 3 prespecified health texts. The Health Literacy Editor gives objective, real-time feedback on words and sentences. Control participants revised the texts using their own standard health information development processes., Main Outcomes and Measures: The preregistered primary outcome was the text school grade reading score (using a validated instrument, the Simple Measure of Gobbledygook). Secondary outcomes were text complexity (percentage of text using complex language), use of passive voice (number of instances), and subjective expert ratings (5-point Likert scale corresponding to items on the Patient Education Materials Assessment Tool)., Results: A total of 211 participants were randomized, with 105 in the intervention group and 106 in the control group. Of 181 participants in the intention-to-treat analysis (mean [SD] age, 41.0 [11.6] years; 154 women [85.1%]), 86 were in the intervention group and 95 in the control group. Texts revised in the intervention group had significantly improved grade reading scores (mean difference [MD], 2.48 grades; 95% CI, 1.84-3.12 grades; P < .001; Cohen d, 0.99), lower text complexity scores (MD, 6.86; 95% CI, 4.99-8.74; P < .001; Cohen d, 0.95), and less use of passive voice (MD, 0.95 instances; 95% CI, 0.44-1.47 instances; P < .001; Cohen d, 0.53) compared with texts revised in the control group in intention-to-treat analyses. Experts rated texts in the intervention group more favorably for word choice and style than those in the control group (MD, 0.44; 95% CI, 0.25-0.63; P < .001; Cohen d, 0.63), with no loss of meaning or content., Conclusions and Relevance: In this randomized clinical trial, the Health Literacy Editor helped users simplify health information and apply health literacy guidelines to written text. The findings suggest the tool has high potential to improve development of health information for people who have low health literacy. As an online tool, the Health Literacy Editor is also easy to access and implement at scale., Trial Registration: ANZCTR Identifier: ACTRN12623000386639.

Research into health literacy and shared decision-making has largely developed along parallel, but distinct lines over the past two decades. There is little evidence that the concepts and related practice have intersected except in the most functional way, for example, to simplify shared decision-making tools by improving readability scores of decision aids. This paper presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients' skills and capacities, alongside modifications to written and verbal information. We propose an expanded model of shared decision-making which incorporates health literacy concepts and promotes two-tiered intervention methods to improve the targeting and personalization of communication and support the development of transferable health literacy skills among patients.

Objectives and importance of the study: Adult literacy programs aim to empower learners to participate more effectively in everyday life. This includes programs with health content embedded in curricula to target health literacy. Adult learners who attend these programs represent a heterogeneous population, but include a high proportion of hard-to-reach or socially disadvantaged groups in terms of age, ethnicity, educational background, language and prevalence of learning disabilities. In 2014, we conducted a cluster-randomised controlled trial of a health literacy program in adult basic education classes across New South Wales, Australia. This paper reports findings from a qualitative study exploring learners' experience of the course and its perceived impact on their lives, as well as their understanding and confidence about health., Study Type: Qualitative interview study., Method: We conducted semistructured interviews as part of the evaluation of the 18-week health literacy program, with participants purposively recruited from six health literacy classes (n = 22). Researchers trained in qualitative methods interviewed adult learners either face to face or over the phone using a topic guide. Data was analysed using the Framework method, a matrix-based approach to thematic analysis., Results: The majority of interviewees were female, lived in metropolitan areas and were from non-English-speaking backgrounds. Most had existing self-reported health problems and inadequate functional health literacy. Most participants described positive impacts of the health literacy course on their language, literacy and numeracy skills, functional health literacy skills, and health knowledge. They also reported being able to translate this into health actions including interacting with providers, accessing and using healthcare, and managing health and illness (e.g. making healthier food choices). Learners also described positive social outcomes of the course, including feelings of connectedness and interpersonal trust within a new network of learners, and reported sharing new knowledge with others in their communities., Conclusions: The findings add value to existing limited evidence that has demonstrated the untapped potential of adult basic education to develop health literacy skills among socially disadvantaged groups. Learners valued the opportunity to share experiences in structured group learning, and reported confidence to transfer new knowledge into their home and wider social network., Competing Interests: None declared.

Objective: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills/practices; however, the nature of this process is unclear. This systematic review synthesized qualitative studies that explored the process of decision-making and characterized how AYA healthcare information is shared, from the perspective of the AYA and their family members., Methods: Electronic searches of EMBASE, MEDLINE, PsycINFO, and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analyzed thematically using Framework analysis., Results: Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model 3 in that AYAs draw on their family members' knowledge, skills, and practices to generate informed options and make shared decisions. Families of AYAs were found to be involved throughout all stages of decision-making. The use of health literacy skills was also found to be distributed in families, such that family members of AYAs mediate access to knowledge and use of health information in the decision-making process., Conclusions: Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers, and other stakeholders with a framework to foster AYA engagement in decision-making., (© 2019 John Wiley & Sons, Ltd.)

Objectives: This study aimed to describe the levels of health literacy and experience of care coordination among Chinese migrant patients with cancer and their carers in Australia, and to examine factors associated with these., Methods: Patients' self-reported data were collected using the Health Literacy and Cancer Care Coordination questionnaires. We conducted multivariate linear regression analyses to investigate predictors of patients' health literacy and their care experience. Canonical correlation analysis was used to examine the relationship between patients' health literacy and their care experience., Results: A total of 68 patients and eight carers participated in the survey. Patients and carers reported similar levels of health literacy, with the lowest scores being in the "Having sufficient information to manage health" and "Navigating the health system" subscales. Gender (P = 0.026, partial η 2  = 0.281) and educational attainment (P = 0.015, partial η 2  = 0.250) had significant and large effects on patients' health literacy, after controlling for each other. Educational attainment showed a significant and medium association with patients' experience of cancer care coordination (P = 0.041, partial η 2  = 0.101). A large and positive correlation was found between patients' health literacy and experience of cancer care coordination (canonical correlation = 0.81)., Conclusions: Our findings reveal the health literacy and care coordination needs of Chinese migrant patients with cancer in Australia, especially those with lower educational attainment. Future efforts are necessary to enhance Chinese migrants' health literacy and establish an accessible and easy-to-navigate care environment., (© 2019 John Wiley & Sons, Ltd.)

Background: Enhancing health literacy can play a major role in improving healthcare and health across the globe. To build higher-order (communicative/critical) health literacy skills among socially disadvantaged Australians, we developed a novel shared decision making (SDM) training programme for adults with lower literacy. The programme was delivered by trained educators within an adult basic education health literacy course., Objective: To explore the experience of teaching SDM within a health literacy programme and investigate whether communicative/critical health literacy content meets learner needs and teaching and institutional objectives., Design and Participants: Qualitative interview study with 11 educators who delivered the SDM programme. Transcripts were analysed using the Framework approach; a matrix-based method of thematic analysis., Results: Teachers noted congruence in SDM content and the institutional commitment to learner empowerment in adult education. The SDM programme was seen to offer learners an alternative to their usual passive approach to healthcare decision making by raising awareness of the right to ask questions and consider alternative test/treatment options. Teachers valued a structured approach to training building on foundational skills, with language reinforcement and take-home resources, but many noted the need for additional time to develop learner understanding and cover all aspects of SDM. Challenges for adult learners included SDM terminology, computational numerical risk tasks and understanding probability concepts., Discussion and Conclusions: SDM programmes can be designed in a way that both supports teachers to deliver novel health literacy content and empowers learners. Collaboration between adult education and healthcare sectors can build health literacy capacity of those most in need., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Objective: Participation in shared decision-making (SDM) may be difficult for adults with lower literacy. Tools to support consumers to engage in SDM are rarely designed for or evaluated with adults with lower literacy and/or poor English language., Methods: Qualitative interviews were conducted with 26 adults with lower literacy and/or poor English language skills to investigate (a) whether participants where able to read and understand two generic SDM consumer support tools (Smart Health Choices and AskShareKnow question-sets), (b) which question-set was easier for participants and, (c) perceived usefulness of the question-sets and barriers to use. Interviews were analysed using Framework Analysis., Results: Participants had difficulties understanding terms embedded within both the AskShareKnow and Smart Health Choices questions. Our findings suggest that the AskShareKnow question-set was easier for our participants than the Smart Health Choices questions, and clarification using a structured response was reasonably effective. While participants appreciated the usefulness of the questions, they identified important barriers to use., Conclusions: Generic question-sets alone are not sufficient to support SDM for adults with lower literacy and/or poor English-language skills., Practice Implications: To ensure that SDM is accessible to all, we must consider how best to support adults with low literacy and/or poor English-language skills to participate in this process., (Copyright © 2016. Published by Elsevier Ireland Ltd.)

Background: Adult education institutions have been identified as potential settings to improve health literacy and address the health inequalities that stem from limited health literacy. However, few health literacy interventions have been tested in this setting., Methods: Feasibility study for an RCT of the UK Skilled for Health Program adapted for implementation in Australian adult education settings. Implementation at two sites with mixed methods evaluation to examine feasibility, test for change in participants' health literacy and pilot test health literacy measures., Results: Twenty-two socially disadvantaged adults with low literacy participated in the program and received 80-90 hours of health literacy instruction. The program received institutional support from Australia's largest provider of vocational education and training and was feasible to implement (100 % participation; >90 % completion; high teacher satisfaction). Quantitative results showed improvements in participants' health literacy skills and confidence, with no change on a generic measure of health literacy. Qualitative analysis identified positive student and teacher engagement with course content and self-reported improvements in health knowledge, attitudes, and communication with healthcare professionals., Conclusions: Positive feasibility results support a larger RCT of the health literacy program. However, there is a need to identify better, multi-dimensional measures of health literacy in order to be able to quantify change in a larger trial. This feasibility study represents the first step in providing the high quality evidence needed to understand the way in which health literacy can be improved and health inequalities reduced through Australian adult education programs.

Background: People with low literacy and low health literacy have poorer health outcomes. Literacy and health literacy are distinct but overlapping constructs that impact wellbeing. Interventions that target both could improve health outcomes., Methods/design: This is a cluster randomised controlled trial with a qualitative component. Participants are 300 adults enrolled in basic language, literacy and numeracy programs at adult education colleges across New South Wales, Australia. Each adult education institute (regional administrative centre) contributes (at least) two classes matched for student demographics, which may be at the same or different campuses. Classes (clusters) are randomly allocated to receive either the health literacy intervention (an 18-week program with health knowledge and skills embedded in language, literacy, and numeracy training (LLN)), or the standard Language Literacy and Numeracy (LLN) program (usual LLN classes, specifically excluding health content). The primary outcome is functional health literacy skills - knowing how to use a thermometer, and read and interpret food and medicine labels. The secondary outcomes are self-reported confidence, more advanced health literacy skills; shared decision making skills, patient activation, health knowledge and self-reported health behaviour. Data is collected at baseline, and immediately and 6 months post intervention. A sample of participating teachers, students, and community health workers will be interviewed in-depth about their experiences with the program to better understand implementation issues and to strengthen the potential for scaling up the program., Discussion: Outcomes will provide evidence regarding real-world implementation of a health literacy training program with health worker involvement in an Australian adult education setting. The evaluation trial will provide insight into translating and scaling up health literacy education for vulnerable populations with low literacy., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616000213448 .

Health literacy can influence long-term health outcomes. This study aimed to validate an adapted version of the Functional, Communicative and Critical Health Literacy measure for adolescent and young adult (AYA) cancer patients and survivors (N = 105; age 12-24 years). Exploratory factor analysis was used to validate the measure, and indicated that a slightly modified item structure better fit the results. Furthermore, item response theory analysis highlighted location and discrimination parameter differences among items. Acceptability of the measure was high. This is the first validation of a health literacy measure among AYAs with an illness such as cancer.

Communication support tools (CST) improve patient outcomes in oncology including: knowledge, satisfaction, self-management, and adherence to planned treatment. Little is known about communication support tools use in patients with primary or secondary brain tumours. We aimed to explore cognitive function and communication support tool use in this population. This prospective survey involved patients, caregivers and health professionals. Questionnaires were completed after initial brain radiotherapy consultation and 1-2 weeks later. Patients completed the Montreal Cognitive Assessment (MoCA). Descriptive statistics are reported. Fifty-three patients participated, median age 62 years, ECOG status 0-2 (90 %), with 75 % having secondary brain metastasis. 21/53 (40 %) patients reported needing help reading medical information. Only 28 % patients had normal cognition (MoCA score ≥ 26/30). Initially, 82 % of patients and 87 % of caregivers reported the consultation was 'extremely/quite clear, and 69 % of their health professionals thought consultation 'extremely/quite clear' to patient. At follow-up, fewer patients (75 %) reported health professionals' explanation as 'extremely/quite clear'. Although patients recalled discussed illness and treatment details, 82 % recalled treatment-related side effects and management thereof by 46 %. CST use was reported by 22 % patients, 19 % caregivers, and 27 %health professionals. When used, tools improved understanding according to 92 % patients, 100 % caregivers, and 91 % health professionals. The majority of patients have some level of cognitive impairment. Information discussed appears clear to most patients, but this is not sustained, and recall of treatment toxicity management is poor. Few CSTs are used in consultations, but when used, are reported as helpful by all.

Objective: Given the scarcity of shared decision-making (SDM) interventions for adults with low literacy, we created a SDM training program tailored to this population to be delivered in adult education settings., Methods: Formative evaluation during program development included a review of the problem and previous efforts to address it, qualitative interviews with the target population, program planning and field testing., Results: A comprehensive SDM training program was developed incorporating core SDM elements. The program aimed to improve students' understanding of SDM and to provide them with the necessary skills (understanding probabilistic risks and benefits, personal values and preferences) and self-efficacy to use an existing set of questions (the AskShareKnow questions) as a means to engage in SDM during healthcare interactions., Conclusions: There is an ethical imperative to develop SDM interventions for adults with lower literacy. Generic training programs delivered direct-to-consumers in adult education settings offer promise in a national and international environment where too few initiatives exist., Practice Implications: Formative evaluation of the program offers practical insights into developing consumer-focused SDM training. The content of the program can be used as a guide for future efforts to engage consumers in SDM., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

Optimal patient care is directed by clinical practice guidelines, with emphasis on shared decision-making. However, guidelines—and interventions to support their implementation—often do not reflect the needs of ethnic minorities, who experience inequities in chronic kidney disease (CKD) prevalence and outcomes. This review aims to describe what interventions exist to promote decision-making, self-management and/or health literacy for ethnic-minority people living with CKD, describe intervention development and/or adaptation processes, and explore the impact on patient outcomes. Six databases were searched (MEDLINE, PsychINFO, Scopus, EMBASE, CINAHL, InformitOnline) and two reviewers independently extracted study data and assessed risk of bias. Twelve studies (n  = 291 participants), conducted in six countries and targeting nine distinct ethnic-minority groups, were included. Intervention strategies consisted of: (i) face-to-face education/skills training (three studies, n  = 160), (ii) patient education materials (two studies, n  = unspecified), (iii) Cultural Health Liaison Officer (six studies, n  = 106) or (iv) increasing access to healthcare (three studies, n  = 25). There was limited description of cultural targeting/tailoring. Where written information was translated into languages other than English, the approach was exact translation without other cultural adaptation. Few studies reported on community-based research approaches, intervention adaptations requiring limited or no literacy (e.g. infographics; photographs and interviews with local community members) and the inclusion of Cultural Health Liaison Officer as part of intervention design. No community-based interventions were evaluated for their impact on clinical or psychosocial outcomes. All interventions conducted in the hospital settings reported favourable outcomes (e.g. reduction in blood pressure) compared with routine care but were limited by methodological issues. [ABSTRACT FROM AUTHOR]

Background: We developed a smartphone app—the SUCCESS (Supporting Culturally and Linguistically Diverse CKD Patients to Engage in Shared Decision-Making Successfully) app—to support Australian adults with kidney failure undertaking dialysis to actively participate in self-management and decision-making. The content of the SUCCESS app was informed by a theoretical model of health literacy that recognizes the importance of reducing the complexity of health information as well as providing skills necessary to access, understand, and act on this information. Objective: The purpose of this study is to investigate the efficacy of the SUCCESS app intervention. Methods: We designed a multicenter pragmatic randomized controlled trial to compare the SUCCESS app plus usual care (intervention) to usual care alone (control). A total of 384 participants receiving in-center or home-based hemodialysis or peritoneal dialysis will be recruited from six local health districts in the Greater Sydney region, New South Wales, Australia. To avoid intervention contamination, a pragmatic randomization approach will be used for participants undergoing in-center dialysis, in which randomization will be based on the days they receive hemodialysis and by center (ie, Monday, Wednesday, and Friday or Tuesday, Thursday, and Saturday). Participants undergoing home-based dialysis will be individually randomized centrally using simple randomization and two stratification factors: language spoken at home and research site. Consenting participants will be invited to use the SUCCESS app for 12 months. The primary endpoints, which will be assessed after 3, 6, and 12 months of app usage, are health literacy skills, evaluated using the Health Literacy Questionnaire; decision self-efficacy, evaluated using the Decision Self-Efficacy Scale; and rates of unscheduled health encounters. Secondary outcomes include patient-reported outcomes (ie, quality of life, evaluated with the 5-level EQ-5D; knowledge; confidence; health behavior; and self-management) and clinical outcomes (ie, symptom burden, evaluated with the Palliative care Outcome Scale–Renal; nutritional status, evaluated with the Patient-Generated Subjective Global Assessment; and intradialytic weight gain). App engagement will be determined via app analytics. All analyses will be undertaken using an intention-to-treat approach comparing the intervention and usual care arms. Results: The study has been approved by Nepean Blue Mountains Human Research Ethics Committee (2020/ETH00910) and recruitment has begun at nine sites. We expect to finalize data collection by 2023 and publish the manuscript by 2024. Conclusions: Enhancing health literacy skills for patients undergoing hemodialysis is an important endeavor, given the association between poor health literacy and poor health outcomes, especially among culturally diverse groups. The findings from this trial will be published in peer-reviewed journals and disseminated at conferences, and updates will be shared with partners, including participating local health districts, Kidney Health Australia, and consumers. The SUCCESS app will continue to be available to all participants following trial completion. [ABSTRACT FROM AUTHOR]

Research into health literacy and shared decision-making has largely developed along parallel, but distinct lines over the past two decades. There is little evidence that the concepts and related practice have intersected except in the most functional way, for example, to simplify shared decision-making tools by improving readability scores of decision aids. This paper presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients' skills and capacities, alongside modifications to written and verbal information. We propose an expanded model of shared decision-making which incorporates health literacy concepts and promotes two-tiered intervention methods to improve the targeting and personalization of communication and support the development of transferable health literacy skills among patients. [ABSTRACT FROM AUTHOR]

Objective: Radiation oncology consultations involve explanation of complex technical concepts using medical jargon. This study aimed to: analyse types and frequency of medical jargon that radiation therapists (RTs) use during education sessions; identify how patients seek clarification from RTs; and, explore RTs communication strategies.Methods: Education sessions were audio-recorded and transcribed. Medical jargon was analysed using MaxDictio (a vocabulary analysis programme). A distinction was made between specialised (specialised terms used in RT or cancer) and contextual jargon (common everyday words with a different meaning in RT). Qualitative data were analysed using Framework analysis.Results: Fifty-eight patients and 10 RTs participated. Contextual treatment jargon were the most frequently used jargon (32.2%) along with general medical terms (34.6%). Patients appeared uncertain about the number of treatments, side effects, and the risks of radiation. Patients sought clarification by asking RTs to explain or repeat information. RTs replaced jargon with a simpler word, used everyday analogies, and diagrams.Conclusion: Use of medical jargon is common in RT education sessions. RTs used different jargon types to varying degrees, but contextual jargon dominated.Practice Implications: Training RTs how to tailor information to enhance patients' understanding would be beneficial. Future research exploring medical jargon used in other (non-) oncology settings is required. [ABSTRACT FROM AUTHOR]