Advanced prostate cancer experimental radioactive treatment-clinical trial decision making: patient experiences.

ObjectivesNested qualitative studies within clinical trials provide the opportunity to better understand participant experiences of participation and identify areas where improved support is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy.MethodsFifteen men with advanced prostate cancer were recruited from the TheraP clinical trial and interviewed at three time points during the trial. Interviews were inductively analysed using thematic analysis. This research paper reports the results from the baseline interview at commencement of the trial, focusing specifically on participants' enrolment experiences.ResultsFour themes were identified representing the lived experiences of men with advanced prostate cancer deciding to participate in the TheraP trial: (1) hoping to survive; (2) needing to feel informed; (3) choosing to participate and (4) being randomised. The process of deciding to enrol in a clinical trial is filled with indecision, emotional difficulties and focused on a desire to live.ConclusionsFor men with advanced prostate cancer, the experience of deciding to enrol in a clinical trial is principally driven by a desire to survive but interlinked with the need to make an informed decision as participants in this study expressed a preference for allocation to the experimental arm. Men seeking to enrol in clinical trials of new prostate cancer treatments would benefit from improved informational and decision support.Trial registration numberNCT03392428, ANZUP1603

Skills for Shared Decision-Making: Evaluation of a Health Literacy Program for Consumers with Lower Literacy Levels.

Background: Shared decision-making (SDM) has been found to be significantly and positively associated with improved patient outcomes. For an SDM process to occur, patients require functional, communicative, and critical health literacy (HL) skills. Objective: This study aimed to evaluate the impact of a program to improve health literacy skills for SDM in adults with lower literacy. Methods: An HL program including an SDM component (HL + SDM) and teaching of the three "AskShareKnow" questions was delivered in adult basic education settings in New South Wales, Australia. The program was evaluated using a partially cluster-randomized controlled trial comparing it to standard language, literacy, and numeracy (LLN) training. We measured the effect of these programs on (1) HL skills for SDM (conceptual knowledge, graphical literacy, health numeracy), (2) types of questions considered important for health decision-making, (3) preferences for control in decision-making, and (4) decisional conflict. We also measured AskShareKnow question recall, use, and evaluation in HL + SDM participants. Key Results: There were 308 participants from 28 classes enrolled in the study. Most participants had limited functional HL (71%) and spoke a language other than English at home (60%). In the primary analysis, the HL + SDM program compared with the standard LLN program significantly increased conceptual knowledge (19.1% difference between groups in students achieving the competence threshold; p = .018) and health numeracy (10.9% difference; p = .032), but not graphical literacy (5.8% difference; p = .896). HL + SDM participants were significantly more likely to consider it important to ask questions that would enable SDM compared to standard LLN participants who prioritized nonmedical procedural questions (all p < .01). There was no difference in preferences for control in decision-making or in decisional conflict. Among HL + SDM participants, 79% (n = 85) correctly recalled at least one of the AskShareKnow questions immediately post-intervention, and 35% (n = 29) after 6 months. Conclusions: Teaching SDM content increased participants' HL skills for SDM and changed the nature of the questions they would ask health care professionals in a way that would enable shared health decisions. [HLRP: Health Literacy Research and Practice. 2019;3(Suppl.):S58-S74.]. Plain Language Summary: We developed a health literacy program that included a shared decision-making (SDM) section. The program was delivered in adult basic education classes by trained educators and compared to standard language, literacy, and numeracy training. Teaching SDM content increased participants' health literacy skills for SDM and changed the nature of the questions they would ask health care professionals

Qualitative insights into the experience of teaching shared decision making within adult education health literacy programmes for lower-literacy learners

© 2017 The Authors Health Expectations Published by 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

Developing Verbal Health Literacy with Adult Learners Through Training in Shared Decision-Making.

BACKGROUND: Health literacy skills are often assessed in relation to written health materials; however, many important communications are in other formats, especially verbal communication with health care providers. OBJECTIVE: This qualitative study sought to examine adult learners' experiences of developing verbal health literacy skills within an Australian adult basic education program, and to explore verbal communication and shared decision-making as a constituent domain of health literacy. METHODS: We conducted a semi-structured qualitative interview study between September and November 2014 with adult learners who had participated in a single-semester health literacy program that included an integrated shared decision-making component. We analyzed interviews using the Framework method; a matrix-based approach to thematic analysis. A hybrid process of inductive and deductive coding was used to interpret raw data. KEY RESULTS: Interviewees were 22 students from six health literacy classes and ranged in age from 18 to 74 years (mean, 48.3). The majority were women (n = 15) and born outside Australia (n = 13). Health literacy was generally limited according to the Newest Vital Sign screening tool (n = 17). The health literacy program appeared to serve two key functions. First, it stimulated awareness that patients have the right to participate in decision-making concerning their treatment and care. Second, it facilitated verbal skill development across the domains of functional (e.g., communicating symptoms), communicative (e.g., asking questions to extract information about treatment options), and critical (e.g., integrating new knowledge with preferences) health literacy. CONCLUSIONS: Our findings support the conceptualization of health literacy as a modifiable health asset that is subject to change and improvement as a result of deliberate intervention. Results reinforce verbal health literacy as an important component of health literacy, and draw attention to the hierarchy of verbal skills needed for consumers to become more actively involved in decisions about their health. We present a revised model of health literacy based on our findings. [Health Literacy Research and Practice. 2017;1(4):e257-e268.]. PLAIN LANGUAGE SUMMARY: We developed a health literacy program for adults with lower literacy to help learners develop skills to talk to health care providers and share health decisions. The program was taught in Australian adult education settings. The article explores the range of health literacy skills needed for communication and decision-making in this study, and presents a model in which verbal skills are an important part of health literacy

Evaluation of an Australian Health Literacy Program Delivered in Adult Education Settings.

BACKGROUND: Adult education targeting health literacy (HL) may bring added value in the form of improved health. OBJECTIVE: This study evaluated the effects of a HL program as part of an adult education curriculum for adults with low literacy and numeracy. METHODS: This was a partial-cluster randomized controlled trial among 308 adults enrolled in basic education programs in Australia. Of the 308 participants, 141 (46%) were randomized to either the standard program (language, literacy, and numeracy [LLN]), or the HL intervention (LLN with embedded health content); the remainder (n = 167) were allocated to standard intervention programs by the education provider at the class level. The main outcomes were functional HL, self-reported confidence, patient activation, generic HL (ie, HLQ, health knowledge, and self-reported health behavior). Data were collected at baseline, immediately after, and at 6 months post-intervention. KEY RESULTS: Of the 308 participants, 71% had limited literacy and 60% spoke a language other than English at home. Both interventions benefited participants, with improvements from baseline to immediate follow up on individual-level functional HL (e.g., reading a thermometer; HL group 18.4% vs. standard group 7.2%; p = .001), confidence (HL group 0.34 vs. standard group 0.06; p = .014) and health literacy questionnaire (HLQ) subscales. At 6 months, improvements in confidence (p < .001) and some HLQ measures were retained. A consistent pattern of increased improvement in the HL program was observed compared to the standard program, although only some measures reached statistical significance: reading a food label (HL group 6.03/10 correct vs. standard group 5.49/10 correct; p = .022); confidence (p = .008); ability to actively manage health (HLQ) (p = .017), and health knowledge at 6 months (HL group 68% vs. standard group 60% correct, p = .052). HL participants reported being more likely to share course information and rated the program more useful to understand their health. CONCLUSIONS: Improving language, literacy, and numeracy generally has potential public health benefits that are retained at 6 months. Integrating health content adds further value to adult basic learning, is feasible, and potentially scalable. [HLRP: Health Literacy Research and Practice. 2019;3(Suppl.):S42-S57.]. PLAIN LANGUAGE SUMMARY: We compared the effect of an adult education-based health literacy (HL) program versus a standard language, literacy, and numeracy program on students' HL skills and psychosocial outcomes. Although students in both trial arms improved their skills, students in the HL program had better outcomes with higher HL, greater confidence, and higher health knowledge scores at 6 months

Learners' experience and perceived impact of a health literacy program in adult basic education: a qualitative study.

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

What is the effect of a low literacy talking book on patient knowledge, anxiety and communication before radiation therapy starts? A pilot study

Introduction: Radiation therapy is a common cancer treatment, requiring timely information to help patients prepare for treatment. We pilot tested a low literacy, psycho-educational talking book (written booklet, with accompanying audio recording) to examine (i) the effect of the tool on knowledge, anxiety and communication; (ii) acceptability, and (iii) how it was used in appointments. Methods: A pre-post design was employed. Patients scheduled to receive radiation therapy for any cancer were recruited from two hospitals in Sydney, Australia. Participants were sent the talking book before treatment planning and completed baseline and follow-up surveys, before and after the intervention. Results: Forty participants were recruited, and 39 completed all study assessments. Overall, knowledge increased after receiving the talking book by 3.8 points from 13.9 to 17.7/20 (95% confidence interval (CI) 2.7, 4.8, P < 0.001). Anxiety and concerns were significantly lower after receiving the talking book (P = 0.015 and P = 0.004, respectively). Nearly half of participants (s = 17, 48%) reported using the book during appointments. Most reported finding it easier to communicate (n = 31, 89%) and to ask more questions (n = 21, 62%). Conclusion: The talking book shows promise in improving knowledge, reducing anxiety and enhancing communication. Strategies to support the implementation of the talking book are required. Further studies to translate the book into different languages are also planned

Does a small central Nd:YAG posterior capsulotomy improve peripheral fundal visualisation for the Vitreoretinal surgeon?

BACKGROUND: To evaluate the effect of Nd:YAG capsulotomy for posterior capsular opacification (PCO) on visualisation of the peripheral fundus with scleral indentation. METHODS: Patients undergoing Nd:YAG capsulotomy for PCO were examined pre- and four weeks post- Nd:YAG capsulotomy. In order to give a quantitative measure of visualisation of the peripheral retina, a novel scalar measurement was developed. Changes in the degree of visualisation following Nd:YAG capsulotomy were calculated. RESULTS: There was a significant improvement in fundal visualisation of the retinal periphery with scleral indentation following Nd:YAG capsulotomy (p = 0.001). CONCLUSION: Peripheral fundal visualisation with scleral indentation improves following a small central Nd:YAG capsulotomy. This finding is important in relation to the detection of peripheral pseudophakic retinal breaks, particularly in those patients deemed at high risk following Nd:YAG capsulotomy

The role of multiple marks in epigenetic silencing and the emergence of a stable bivalent chromatin state

We introduce and analyze a minimal model of epigenetic silencing in budding yeast, built upon known biomolecular interactions in the system. Doing so, we identify the epigenetic marks essential for the bistability of epigenetic states. The model explicitly incorporates two key chromatin marks, namely H4K16 acetylation and H3K79 methylation, and explores whether the presence of multiple marks lead to a qualitatively different systems behavior. We find that having both modifications is important for the robustness of epigenetic silencing. Besides the silenced and transcriptionally active fate of chromatin, our model leads to a novel state with bivalent (i.e., both active and silencing) marks under certain perturbations (knock-out mutations, inhibition or enhancement of enzymatic activity). The bivalent state appears under several perturbations and is shown to result in patchy silencing. We also show that the titration effect, owing to a limited supply of silencing proteins, can result in counter-intuitive responses. The design principles of the silencing system is systematically investigated and disparate experimental observations are assessed within a single theoretical framework. Specifically, we discuss the behavior of Sir protein recruitment, spreading and stability of silenced regions in commonly-studied mutants (e.g., sas2, dot1) illuminating the controversial role of Dot1 in the systems biology of yeast silencing.Comment: Supplementary Material, 14 page