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Issue addressed Inadequate health literacy is common in those with chronic kidney disease (CKD), especially among culturally and linguistically diverse groups. Patient information for people with CKD, including those with kidney failure requiring dialysis, is often written beyond their literacy level, and many CKD-related apps are not accurate or evidence based. These represent important barriers to health care decision-making and equity in access to health care. Methods We developed a cross-platform application (the "SUCCESS app") to support Australian adults with kidney failure requiring dialysis to actively participate in self-management and decision-making. App content was informed by health literacy theory which recognises the importance of reducing the complexity of health information as well as equipping consumers with the skills necessary to access, understand and act on this information. The development team comprised members of diverse backgrounds and expertise, including nursing, allied health, psychology, epidemiology, nephrology and IT, as well as consumer representatives. Results Content areas included diet, fluids, medicine, physical activity, emotional well-being and supportive care, chosen as they represent important decision points in the CKD trajectory. To support functional health literacy, a four-step process to simplify written content was used including calculating readability statistics, applying the Patient Education Materials Assessment Tool, supplementing written information with video and audio content, and incorporating micro-learning and interactive quizzes. To develop communicative and critical health literacy skills, question prompt lists and evidence-based volitional help sheets were included in each module to support question-asking and behaviour change. We also developed animated skills training related to communication, shared decision-making and critical appraisal of health information. Conclusions This is the first health literacy informed app developed to promote active patient participation in CKD management and decision-making. Ongoing evaluation of the SUCCESS app through analysis of quantitative and qualitative data will provide valuable insights into the feasibility of implementing the app with dialysis patients, and the impact of the intervention of psychosocial and clinical outcomes. SO WHAT?: Digital health solutions have been found to improve self-management for chronic conditions, and could optimise the use of health care services and patient outcomes.

Objectives Question prompt lists (QPLs) are one strategy to increase patient participation in healthcare decisions but the extent to which consumers might access them in the ‘real world’ is largely unknown. This study measured usage of a passively-promoted, government-funded web-based patient-generated QPL tool, called Question Builder (Australia) (QB) hosted on healthdirect.gov.au, a consumer health information website. Methods 12.5months of post-launch Google Analytics data from QB were analysed. Two existing coding frameworks (RIAS and ACEPP) were used to code QB questions thematically and 107 user-generated lists were analysed further to determine the questions chosen and prioritised. Results QB was accessed 8915 times, 4000 question lists were commenced and 1271 lists completed. Most lists were for general practice (GP) consultations (2444) rather than specialist consultations (1556). The most frequently chosen question was “Do I need any tests?”. Shared decision-making questions (SDM) made up 40% of questions prioritised e.g. “Do I need any treatment and what are my treatment options?” Conclusions There is active use of this online QPL, with strong interest in creating lists for GP consultations. Question Builder users prioritised questions which facilitate SDM. Practice Implications More research is required to assess the utilisation of QB in practice and health professionals’ views of QB.

Objectives To explore how decisions are made in real-life general practice consultations with older patients (65+ years), and examine how general practitioners (GPs) communicate risk and benefit information and evidence, and integrate patient preferences. Methods Secondary analysis of 20 video-recorded consultations with older patients in Australian primary healthcare settings. Consultations were analysed qualitatively using the Framework method and quantitatively using the Observer OPTION5 scale and the Assessing Communication about Evidence and Patient Preferences (ACEPP) tool. Results Overall, Observer OPTION5 and ACEPP scores were low, with mean total scores of 11.3 (out of 100) and 10.4 (out of 40) respectively. Together with qualitative findings, these results suggest that shared decision-making did not occur, and that healthcare options (including anticipated benefits and risks), evidence and patient preferences were rarely discussed in our sample of consultations with older people. GPs often unilaterally made treatment decisions (usually pharmacotherapy) while patients reverted to a passive decision-making role. Conclusion We observed a lack of shared decision-making in our primary care study, with little engagement of older patients in decisions about their health. Practice implications Training and support tools may be needed to enhance the capacity and self-efficacy of providers and older patients to share healthcare decisions.

BackgroundClinical pathways (CPs) can improve patient outcomes but can be complex to implement. Technologies, such as clinical decision support (CDS) tools, can facilitate their use, but require end-user testing in clinical settings.ObjectiveThis study applied the Technology Acceptance Model to evaluate the individual, organizational, and technological contexts impacting application of a portal to facilitate a CP for anxiety and depression (the ADAPT Portal) in a metropolitan cancer service. The ADAPT Portal triggers patient screening on patient reported outcomes, alerts staff to high scores, recommends evidence-based management, and triggers review and rescreening at set intervals.MethodsQuantitative and qualitative data on portal activity, data accuracy, and health service staff perspectives were collected. Quantitative data were analyzed descriptively, and thematic analysis was applied to qualitative data.ResultsOverall, 15 (100% of those invited) health service staff agreed to be interviewed. During the pilot, 73 users (36 health service staff members and 37 patients) were registered on the ADAPT Portal. Of the 37 patients registered, 16 (43%) completed screening at least once, with seven screening positive and triaged appropriately. In total, 34 support requests were lodged, resulting in 17 portal enhancements (technical issues). Health service staff considered the ADAPT Portal easy to use and useful; however, some deemed it unnecessary or burdensome (individual issues), particularly in a busy cancer service (organizational issues).ConclusionsUser testing of a CDS to facilitate screening and assessment of anxiety and depression in cancer patients highlighted some technological issues in implementing the ADAPT CDS, resulting in 17 enhancements. Our results highlight the importance of obtaining health service staff feedback when piloting specialized CDS tools and addressing contextual factors when implementing them.

COVID-19 restrictions led to reduced levels of physical activity, increased screen usage, and declines in mental health in youth, however, in-depth understandings of the experiences of high school student-athletes have yet to be explored. To describe the experiences of the COVID-19 pandemic on student-athletes’ physical activity, social connection, and mental health, 20 high school student-athletes living in Calgary, Alberta participated in semi-structured interviews, designed using phenomenography. Participants reported variations in physical activity, social connections, and mental health which were influenced by stay-at-home restrictions and weather. Access to resources, changes to routines, online classes, and social support all influenced engagement in physical activity. School and sports provided opportunities for in-person social connections, impacted by the onset of the pandemic. Participants reported their mental health was influenced by social connections, online classes, and physical activity. Findings from this study will inform the development of resources for high school student-athletes amidst COVID-19.

To evaluate perceptions of a laryngeal cancer fact sheet amongst people with direct experience of the disease and its treatment. A mixed methods study (questionnaire and interview) evaluating the information resource was conducted across two institutions. In total 20 participants responded to the questionnaire. Overall participants reported the information resource was detailed and understandable. Insufficient information was provided on: impact on family in eight participants (40%); impact on work in six (33%); and, second opinions and long-term side effects in five (25%). The majority (67%) wanted a large amount of information with the preferred source being one-on-one meetings with their doctor. The thematic analysis identified three main themes: preferences for information, self-management; and, information sources. People with direct experience of laryngeal cancer and its treatments reported the information resource was comprehensive and clear. There were some gaps in the information provided, particularly related to survivorship issues.

Translation of evidence-based psycho-oncology interventions into routine care can significantly improve patient outcomes, yet effective implementation remains challenging due to numerous real-world barriers. A key factor that may influence implementation is organisational readiness for change. This mixed method study sought to identify factors associated with organisational readiness for implementing the Australian clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP). We collected data from multidisciplinary staff across six Australian cancer services who were preparing to implement the ADAPT CP. Services were categorised as having ‘high’ versus ‘mid-range’ organisational readiness based on a median split on the Organizational Readiness for Implementing Change (ORIC) questionnaire (score range = 12–60). Qualitative data from the semi-structured interviews based on the Promoting Action Research in Health Services (PARiHS) framework were analysed thematically and compared for services with high- versus mid-range organisational readiness. Three services with high- (mean ORIC range, 52.25–56.88), and three with mid-range (range, 38.75–46.39) organisational readiness scores were identified. Staff at services reporting higher readiness described a more collaborative and proactive service culture, strong communication processes and greater role flexibility. They also reported greater confidence in overcoming anticipated barriers and clearer strategies for addressing issues. Levels of organisational readiness were related to distinct qualitative themes. Targeting these issues in services where readiness is mid-range or low prior to full-scale roll-out may improve staff levels of confidence and efficacy in implementing psycho-oncology-focused interventions.

Background Effective translation of evidence-based research into clinical practice requires assessment of the many factors that can impact implementation success. Research methods that draw on recognised implementation frameworks, such as the Promoting Action Research in Health Services (PARiHS) framework, and that test feasibility to gain information prior to full-scale roll-out, can support a more structured approach to implementation. Objective This paper presents qualitative findings from a feasibility study in one cancer service of an online portal to operationalise a clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients. The aim of this study was to explore staff perspectives on the feasibility and acceptance of a range of strategies to support implementation in order to inform the full-scale roll-out. Methods Semi-structured interviews were conducted with fifteen hospital staff holding a range of clinical, administrative and managerial roles, and with differing levels of exposure to the pathway. Qualitative data were analysed thematically, and themes were subsequently organised within the constructs of the PARiHS framework. Results Barriers and facilitators that affected the feasibility of the online portal and implementation strategies were organised across eight key themes: staff perceptions, culture, external influences, attitudes to psychosocial care, intervention fit, familiarity, burden and engagement. These themes mapped to the PARiHS framework’s three domains of evidence, context and facilitation. Conclusions Implementation success may be threatened by a range of factors related to the real-world context, perceptions of the intervention (evidence) and the process by which it is introduced (facilitation). Feasibility testing of implementation strategies can provide unique insights into issues likely to influence full-scale implementation, allowing for early tailoring and more effective facilitation which may save time, money and effort in the long-term. Use of a determinant implementation framework can assist researchers to synthesise and effectively respond to barriers as they arise. While the current feasibility study related to a specific implementation, strategies such as regular engagement with local stakeholders, and discussion of barriers arising in real-time during early testing is likely to be of benefit to all researchers and clinicians seeking to maximise the likelihood of long-term implementation success.

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.

Introduction Consent to biobanking remains controversial, with little empirical data to guide policy and practice. This study aimed to explore the attitudes, motivations, and concerns of both oncology patients and health care professionals (HCPs) regarding biobanking. Materials and methods Qualitative interviews were conducted with oncology patients and HCPs purposively selected from five Australian hospitals. Patients were invited to give biobanking consent as part of a clinical trial and/or for future research were eligible. HCPs were eligible if involved in consenting patients to biobanking or to donate specimens to clinical trials. Results Twenty-two patients participated, with head and neck (36%) and prostate (18%) the most common cancer diagnoses; all had consented to biobanking. Twenty-two HCPs participated, from across eight cancer streams and five disciplines. Themes identified were (a) biobanking is a "no brainer"; (b) altruism or scientific enquiry; (c) trust in clinicians, science, and institutions; (d) no consent-just do it; (e) respecting patient choice ("opt-out"); (f) respectful timing of the request; (g) need for emotional/family support; (h) context of the biobanking request matters; and (i) factors for biobanking success. Discussion These findings reinforced previous findings regarding high public trust in, and support for, biobanking. An initial opt-in consent approach with the option of later opt-out was favored by patients to respect and recognize donor generosity, whereas HCPs preferred an upfront opt-out model. Factors impacting biobanking success included the context of the request for use in a trial or specific research question, pre-existing patient and HCP rapport, a local institution champion, and infrastructure. Implications for practice Patients and health care professionals (HCPs) who experienced cancer biobanking consent were overwhelmingly supportive of biobanking. The motivations and approaches to seeking consent were largely mirrored between the groups. The findings of this study support the opt-in model of biobanking favored by patients; however, HCPs preferred an opt-out model. Both groups recognize the importance of making the request for biobanking at an appropriate time, preferably with emotional or family support, and respecting the timing of the request and privacy of the patient. Biobanking success can be promoted by hospital departments with a research focus by identifying an institutional biobanking champion and ensuring local infrastructure is available.

Background Translation of evidence-based interventions into hospital systems can provide immediate and substantial benefits to patient care and outcomes, but successful implementation is often not achieved. Existing literature describes a range of barriers and facilitators to the implementation process. This systematic review identifies and explores relationships between these barriers and facilitators to highlight key domains that need to be addressed by researchers and clinicians seeking to implement hospital-based, patient-focused interventions. Methods We searched MEDLINE, PsychInfo, Embase, Web of Science, and CINAHL using search terms focused specifically on barriers and facilitators to the implementation of patient-focused interventions in hospital settings. To be eligible, papers needed to have collected formal data (qualitative or quantitative) that specifically assessed the implementation process, as experienced by the staff involved. Results Of 4239 papers initially retrieved, 43 papers met inclusion criteria. Staff-identified barriers and facilitators to implementation were grouped into three main domains: system, staff, and intervention. Bi-directional associations were evident between these domains, with the strongest links evident between staff and intervention. Conclusions Researchers and health professionals engaged in designing patient-focused interventions need to consider barriers and facilitators across all three identified domains to increase the likelihood of implementation success. The interrelationships between domains are also crucial, as resources in one area can be leveraged to address barriers in others. These findings emphasize the importance of careful intervention design and pre-implementation planning in response to the specific system and staff context in order to increase likelihood of effective and sustainable implementation. Trial registration This review was registered on the PROSPERO database: CRD42017057554 in February 2017. Electronic supplementary material The online version of this article (10.1186/s13012-018-0726-9) contains supplementary material, which is available to authorized users.

© 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.

Deciding to defunction after anterior resection can be difficult, requiring cognitive tools or heuristics. From our previous work, increasing age and risk-taking propensity were identified as heuristic biases for surgeons in Australia and New Zealand (CSSANZ), and inversely proportional to the likelihood of creating defunctioning stomas. We aimed to assess these factors for colorectal surgeons in the British Isles, and identify other potential biases. The Association of Coloproctology of Great Britain and Ireland (ACPGBI) was invited to complete an online survey. Questions included demographics, risk-taking propensity, sensitivity to professional criticism, self-perception of anastomotic leak rate and propensity for creating defunctioning stomas. Chi-squared testing was used to assess differences between ACPGBI and CSSANZ respondents. Multiple regression analysis identified independent surgeon predictors of stoma formation. One hundred fifty (19.2%) eligible members of the ACPGBI replied. Demographics between ACPGBI and CSSANZ groups were well-matched. Significantly more ACPGBI surgeons admitted to anastomotic leak in the last year (p

© Copyright © 2019 Shepherd, Geerligs, Butow, Masya, Shaw, Price, Dhillon, Hack, Girgis, Luckett, Lovell, Kelly, Beale, Grimison, Shaw, Viney and Rankin. Objective and Study Setting: Research efforts to identify factors that influence successful implementation are growing. This paper describes methods of defining and measuring outcomes of implementation success, using a cluster randomized controlled trial with 12 cancer services in Australia comparing the effectiveness of implementation strategies to support adherence to the Australian Clinical Pathway for the Screening, Assessment and Management of Anxiety and Depression in Adult Cancer Patients (ADAPT CP). Study Design and Methods: Using the StaRI guidelines, a process evaluation was planned to explore participant experience of the ADAPT CP, resources and implementation strategies according to the Implementation Outcomes Framework. This study focused on identifying measurable outcome criteria, prior to data collection for the trial, which is currently in progress. Principal Findings: We translated each implementation outcome into clearly defined and measurable criteria, noting whether each addressed the ADAPT CP, resources or implementation strategies, or a combination of the three. A consensus process defined measures for the primary outcome (adherence) and secondary (implementation) outcomes; this process included literature review, discussion and clear measurement parameters. Based on our experience, we present an approach that could be used as a guide for other researchers and clinicians seeking to define success in their work. Conclusions: Defining and operationalizing success in real-world implementation yields a range of methodological challenges and complexities that may be overcome by iterative review and engagement with end users. A clear understanding of how outcomes are defined and measured, based on a strong theoretical framework, is crucial to meaningful measurement and outcomes. The conceptual approach described in this article could be generalized for use in other studies. Trial Registration: The ADAPT Program to support the management of anxiety and depression in adult cancer patients: a cluster randomized trial to evaluate different implementation strategies of the Clinical Pathway for Screening, Assessment and Management of Anxiety and Depression in Adult Cancer Patients was prospectively registered with the Australian New Zealand Clinical Trials Registry Registration Number: ACTRN12617000411347.

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 model3 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.

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 η2 = 0.281) and educational attainment (P = 0.015, partial η2 = 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 η2 = 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.

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.

BACKGROUND Head and neck cancer (HNC) encompasses a diverse group of tumors, and thus providing appropriate and tailored information to patients before, during, and after treatment is a challenge. The objective of the current study was to characterize the experience and unmet needs of patients with HNC with regard to information and support provision. METHODS A 28-question, cross-sectional survey was completed by patients treated for HNC at 1 of 4 institutions in New South Wales, Australia (Chris O'Brien Lifehouse and Liverpool, Westmead, and Wollongong hospitals). It consisted of the adapted Kessler Psychological Distress Scale and questions assessing information quality, quantity, and format. RESULTS A total of 597 patients responded. The mean age of the patients was 58 years (range, 21-94 years) with 284 men and 313 women (1:1.1). The majority of patients reported information concerning the disease process (76%), prognosis (67%), and treatment (77%) was sufficient, and approximately 50% reporting having received little or no information regarding coping with stress and anxiety. A substantial percentage of patients reported receiving minimal information concerning psychosexual health (56%) or the availability of patient support groups (56%). The majority of patients preferred access to multiple modes of information delivery (72%), with the preferred modality being one-on-one meetings with a health educator (37%) followed by internet-based written information (19%). CONCLUSIONS Patients with HNC are a diverse group, with complex educational and support needs. Patients appear to be given information regarding survivorship topics such as psychological well-being, patient support groups, and psychosexual health less frequently than information concerning disease and treatment. Verbal communication needs to be reinforced by accessible, well-constructed, written and multimedia resources appropriate to the patient's educational level. Cancer 2017;123:1949–1957. © 2017 American Cancer Society.

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.

The aim of this study was to determine the extent and nature of workplace bullying among General Surgery trainees and consultants in Australia.An online questionnaire survey of General Surgery trainees and consultant surgeons in Australia was conducted between March and May 2012. Prevalence of bullying was measured using both a definition of workplace bullying and the revised Negative Acts Questionnaire (NAQ-R). Sources of bullying were also examined, as well as the barriers and outcomes of formal reporting of bullying.The response rate was 34 % (370/1084) with 41 % (n = 152) of respondents being trainees. Overall, 47 % (n = 173) of respondents reported having been bullied to some degree and 68 % (n = 250) reported having witnessed bullying of surgical colleagues in the last 12 months. The prevalence of bullying was significantly higher in trainees and females, with 64 % of trainees and 57 % of females experiencing some degree of bullying. The majority of respondents (83 %) had experienced at least one negative behavior in the last 12 months, but 38 % experienced at least one negative behavior on a weekly or daily basis. The persistent negative behaviors that represent work-related bullying most commonly experienced were 'having opinions ignored' and 'being exposed to an unmanageable workload.' Consultant surgeons were the most common source of bullying for both trainees and consultants, with administration the next common source. Of those who reported being bullied, only 18 % (n = 32) made a formal complaint.Despite increased awareness and interventions, workplace bullying remains a significant problem within General Surgery in Australia. The findings in this study serve as a baseline for future questionnaires to monitor the effectiveness of implemented anti-bullying interventions.

Faecal incontinence (FI) is a debilitating condition, which affects approximately 2–17 % of the population. Clinical assessment, physiological testing and imaging are usually used to evaluate the pathophysiology and guide management of FI. By analysing patient characteristics, symptoms and investigative findings, the aim of this study was to identify which patient characteristics and investigations influence patient management. Data was prospectively collected for all patients with FI presenting to a single surgeon at the Royal Prince Alfred Hospital, Sydney, between March 2002 and September 2013. Continuous data was analysed using the independent T-test. Categorical data was analysed using chi-square tests and logistic regression. Three hundred ninety-eight patients were reviewed; 96 % were female and the mean age was 57 years. Surgical intervention was recommended for 185 patients (47 %) should biofeedback fail. Independent predictors for surgical recommendation were prolapse (p

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. Electronic supplementary material The online version of this article (doi:10.1186/s12889-016-3034-9) contains supplementary material, which is available to authorized users.

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.

Background Web-based therapies hold great promise to increase accessibility and reduce costs of delivering mental health care; however, uptake in routine settings has been low. Objective Our objective in this review was to summarize what is known about health care professionals’ perceptions of the barriers to and facilitators of the implementation of web-based psychological treatments in routine care of adults in health care settings. Methods We searched 5 major databases (MEDLINE, EMBASE, PsycINFO, CINAHL, and the Cochrane Library) for qualitative, quantitative, or mixed-methods studies exploring health professionals’ views on computer- or internet-based psychological treatment programs. We coded included articles for risk of bias and extracted data using a prepiloted extraction sheet. Results We identified 29 eligible articles: 14 qualitative, 11 quantitative, and 4 mixed methods. We identified the following themes: patient factors, health professional factors, the therapeutic relationship, therapy factors, organizational and system factors, and models of care. Health professionals supported web-based therapies only for patients with relatively straightforward, low-risk diagnoses, strong motivation and engagement, high computer literacy and access, and low need for tailored content. They perceived flexibility with timing and location as advantages of web-based therapy, but preferred blended therapy to facilitate rapport and allow active monitoring and follow-up of patients. They emphasized the need for targeted training and organizational support to manage changed workflows. Health professionals were concerned about the confidentiality and security of client data for web-based programs, suggesting that clear and transparent protocols need to be in place to reassure health professionals before they will be willing to refer. Conclusions Without health professionals’ support, many people will not access web-based therapies. To increase uptake, it is important to ensure that health professionals receive education, familiarization, and training to support them in incorporating web-based therapies into their practice, and to design systems that support health professionals in this new way of working with patients and addressing their concerns. Trial Registration PROSPERO CRD42018100869; https://tinyurl.com/y5vaoqsk

Background There is increasing interest in shared decision making (SDM) in Australia. Question prompt lists (QPLs) support question asking by patients, a key part of SDM. QPLs have been studied in a variety of settings, and increasingly the internet provides a source of suggested questions for patients. Environmental scans have been shown to be useful in assessing the availability and quality of online SDM tools. Objective This study aimed to assess the number and readability of QPLs available to users via Google.com.au. Methods Our environmental scan used search terms derived from literature and reputable websites to search for QPLs available via Google.com.au. Following removal of duplicates from the 4000 URLs and 22 reputable sites, inclusion and exclusion criteria were applied to create a list of unique QPLs. A sample of 20 QPLs was further assessed for list length, proxy measures of quality such as a date of review, and evidence of doctor endorsement. Readability of the sample QPL instructions and QPLs themselves was assessed using Flesch Reading Ease and Flesch-Kincaid Grade Level scores. Results Our environmental scan identified 173 unique QPLs available to users. Lists ranged in length from 1 question to >200 questions. Of our sample, 50% (10/20) had a listed date of creation or update, and 60% (12/20) had evidence of authorship or source. Flesch-Kincaid Grade Level scores for instructions were higher than for the QPLs (grades 10.3 and 7.7, respectively). There was over a 1 grade difference between QPLs from reputable sites compared with other sites (grades 4.2 and 5.4, respectively). Conclusions People seeking questions to ask their doctor using Google.com.au encounter a vast number of question lists that they can use to prepare for consultations with their doctors. Markers of the quality or usefulness of various types of online QPLs, either surrogate or direct, have not yet been established, which makes it difficult to assess the value of the abundance of lists. Doctor endorsement of question asking has previously been shown to be an important factor in the effectiveness of QPLs, but information regarding this is not readily available online. Whether these diverse QPLs are endorsed by medical practitioners warrants further investigation.

This study examined the content covered by radiation therapists (RTs) during education sessions; the frequency and types of questions asked by patients; and the relationship between patient characteristics and the number of questions asked. Fifty-eight education sessions were audio-recorded and transcribed verbatim. A coding scheme was developed to examine the frequency of topics covered. It comprised 16 topics under four themes: (a) treatment schedule, (b) procedural information, (c) treatment-related side effects and (d) who will be involved in treatment provision. All education sessions covered information about the treatment plan (n = 58, 100%), and the majority described procedural information about what happens in the treatment room (n = 56, 97%). Least information was given about who will be providing treatment. On average, patients asked a mean of 6 questions (SD = 4.95; range = 0-28). Most frequently asked questions concerned the general treatment (logistics, schedule), accounting for 67% of all questions asked. The least common types of questions were related to the impact of treatment (6%). There were no statistically significant differences in the total number of questions and patient demographics. Patients are provided with most, but not all, of the recommended information. Tailoring of information by RTs was enabled in response to questions asked.

Background There is limited evidence on how to implement shared decision-making (SDM) interventions in routine practice. We conducted a qualitative study, embedded within a 2 × 2 factorial cluster randomized controlled trial, to assess the acceptability and feasibility of two interventions for facilitating SDM about contraceptive methods in primary care and family planning clinics. The two SDM interventions comprised a patient-targeted intervention (video and prompt card) and a provider-targeted intervention (encounter decision aids and training). Methods Participants were clinical and administrative staff aged 18 years or older who worked in one of the 12 clinics in the intervention arm, had email access, and consented to being audio-recorded. Semi-structured telephone interviews were conducted upon completion of the trial. Audio recordings were transcribed verbatim. Data collection and thematic analysis were informed by the 14 domains of the Theoretical Domains Framework, which are relevant to the successful implementation of provider behaviour change interventions. Results Interviews (n = 29) indicated that the interventions were not systematically implemented in the majority of clinics. Participants felt the interventions were aligned with their role and they had confidence in their skills to use the decision aids. However, the novelty of the interventions, especially a need to modify workflows and change behavior to use them with patients, were implementation challenges. The interventions were not deeply embedded in clinic routines and their use was threatened by lack of understanding of their purpose and effect, and staff absence or turnover. Participants from clinics that had an enthusiastic study champion or team-based organizational culture found these social supports had a positive role in implementing the interventions. Conclusions Variation in capabilities and motivation among clinical and administrative staff, coupled with inconsistent use of the interventions in routine workflow contributed to suboptimal implementation of the interventions. Future trials may benefit by using implementation strategies that embed SDM in the organizational culture of clinical settings.

Background To date, limited research has been dedicated to exploring the experience of decision-making for chronic kidney disease (CKD) patients who have initiated dialysis and have to make decisions in the context of managing multiple illnesses. Evidence about the experience of decision-making for minority or disadvantaged groups living with CKD (e.g. culturally and linguistically diverse adults; those with lower health literacy or cognitive impairment) is also lacking. This study aimed to explore the experience of healthcare decision-making among culturally and linguistically diverse adults receiving in-centre haemodialysis for advanced CKD. Methods Semi-structured interviews with English or Arabic-speaking adults recruited from four large haemodialysis units in Greater Western Sydney, Australia using stratified, purposive sampling. Interviews were audio-recorded, transcribed verbatim, and analysed using the Framework method. Results Interviews were conducted with 35 participants from a range of cultural backgrounds (26 English-language; 9 Arabic-language). One quarter had limited health literacy as assessed by the Single Item Literacy Screener. Four major themes were identified from the data, highlighting that participants had limited awareness of decision-points throughout the CKD trajectory (other than the decision to initiate dialysis), expressed passivity regarding their involvement in healthcare decisions, and reported inconsistent information provision within and across dialysis units. There was diversity within cultural and linguistic groups in terms of preferences and beliefs regarding religiosity, decision-making and internalised prototypical cultural values. Conclusion Without sustained effort, adults living with CKD may be uninformed about decision points throughout the CKD trajectory and/or unengaged in the process of making decisions. While culture may be an important component of people’s lives, cultural assumptions may oversimplify the diverse individual differences that exist within cultural groups. Electronic supplementary material The online version of this article (10.1186/s12882-018-1131-y) contains supplementary material, which is available to authorized users.

Background Health service change is difficult to achieve. One strategy to facilitate such change is the clinical pathway, a guide for clinicians containing a defined set of evidence-based interventions for a specific condition. However, optimal strategies for implementing clinical pathways are not well understood. Building on a strong evidence-base, the Psycho-Oncology Co-operative Research Group (PoCoG) in Australia developed an evidence and consensus-based clinical pathway for screening, assessing and managing cancer-related anxiety and depression (ADAPT CP) and web-based resources to support it - staff training, patient education, cognitive-behavioural therapy and a management system (ADAPT Portal). The ADAPT Portal manages patient screening and prompts staff to follow the recommendations of the ADAPT CP. This study compares the clinical and cost effectiveness of two implementation strategies (varying in resource intensiveness), designed to encourage adherence to the ADAPT CP over a 12-month period. Methods This cluster randomised controlled trial will recruit 12 cancer service sites, stratified by size (large versus small), and randomised at site level to a standard (Core) versus supported (Enhanced) implementation strategy. After a 3-month period of site engagement, staff training and site tailoring of the ADAPT CP and Portal, each site will “Go-live”, implementing the ADAPT CP for 12 months. During the implementation phase, all eligible patients will be introduced to the ADAPT CP as routine care. Patient participants will be registered on the ADAPT Portal to complete screening for anxiety and depression. Staff will be responsible for responding to prompts to follow the ADAPT CP. The primary outcome will be adherence to the ADAPT CP. Secondary outcomes include staff attitudes to and experiences of following the ADAPT CP, using the ADAPT Portal and being exposed to ADAPT implementation strategies, collected using quantitative and qualitative methods. Data will be collected at T0 (baseline, after site engagement), T1 (6 months post Go-live) and T2 (12 months post Go-live). Discussion This will be the first cluster randomised trial to establish optimal levels of implementation effort and associated costs to achieve successful uptake of a clinical pathway within cancer care. Trial registration The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347

Is there a relationship between decision-making preferences and psychological distress?Patients who had received treatment for head and neck cancer (HNC) at four institutions within NSW, Australia were invited to complete a single questionnaire.Five hundred and ninety-seven patients completed the questionnaire. The majority of patients (308, 54%) preferred shared decision making. Significant predictors of a preference towards active decision making were education level (OR 2.1 for tertiary, p 0.001), primary cancer site (OR 1.9 for thyroid compared to salivary gland, p = 0.024) and gender (OR 1.4 for female, p = 0.028). Mean psychological distress score on Kessler 6 (K6) was 9 (Range: 0-28). Significant predictors of psychological distress were age (p 0.001), gender (p 0.001), primary site (p 0.01), and decision preference (p 0.01).HNC patients who are either tertiary educated or female are more likely to prefer active involvement in decision-making. Psychological distress is more likely in patients actively involved in decision making, younger patients, and in females.Patients experienced paternalistic decision-making, but most preferred active or a shared approached. Clinicians need to be aware of potential for psychological distress in active decision-makers and refer patients for psychosocial support.

Background Recurrent rectal cancer affects a significant group of patients with no current consensus on management. This study investigated patients' quality of life (QoL) in the 12 months after pelvic exenteration. Method Prospective cohort study with clinical and QoL data collected at baseline and 1, 3, 6, 9 and 12 months. QoL trajectories were modelled over 12 months from date of discharge using linear mixed models. Results Of 117 patients, 93 underwent pelvic exenteration surgery, 24 did not. Thirty-day mortality was nil for both groups. For patients who had surgery, 15 (16%) died within 12 months of surgery compared with nine (38%) of the non-surgery group. Baseline QoL scores were highly variable. The non-exenteration patients' QoL gradually declined over 12 months while exenteration patients declined then recovered. Patients with high baseline QoL scores remained high, and those with low baseline QoL remained low. Baseline QoL score, gender and bony resection were significant predictors of QoL score at 12 months. Conclusion Baseline QoL is a significant, independent predictor of patients' QoL after pelvic exenteration for recurrent rectal cancer.

Objective To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions ‘1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?’ These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement. Methods This single-arm intervention study invited participants attending a reproductive and sexual health-care clinic to view a 4-min video-clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later. Results A total of 121 (78%) participants viewed the video-clip before their consultation. Eighty-four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty-seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions. Conclusions Enabling patients to view a short video-clip before an appointment to improve information and involvement in health-care consultations is feasible and led to a high uptake of question asking in consultations. Practice Implications This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer-targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence-based questions.

IntroductionDespite the observed and theoretical advantages of shared decision-making in a range of clinical contexts, including contraceptive care, there remains a paucity of evidence on how to facilitate its adoption. This paper describes the protocol for a study to assess the comparative effectiveness of patient-targeted and provider-targeted interventions for facilitating shared decision-making about contraceptive methods.Methods and analysisWe will conduct a 2×2 factorial cluster randomised controlled trial with four arms: (1) video+prompt card, (2) decision aids+training, (3) video+prompt cardanddecision aids+training and (4) usual care. The clusters will be clinics in USA that deliver contraceptive care. The participants will be people who have completed a healthcare visit at a participating clinic, were assigned female sex at birth, are aged 15–49 years, are able to read and write English or Spanish and have not previously participated in the study. The primary outcome will be shared decision-making about contraceptive methods. Secondary outcomes will be the occurrence of a conversation about contraception in the healthcare visit, satisfaction with the conversation about contraception, intended contraceptive method(s), intention to use a highly effective method, values concordance of the intended method(s), decision regret, contraceptive method(s) used, use of a highly effective method, use of the intended method(s), adherence, satisfaction with the method(s) used, unintended pregnancy and unwelcome pregnancy. We will collect study data via longitudinal patient surveys administered immediately after the healthcare visit, four weeks later and six months later.Ethics and disseminationWe will disseminate results via presentations at scientific and professional conferences, papers published in peer-reviewed, open-access journals and scientific and lay reports. We will also make an anonymised copy of the final participant-level dataset available to others for research purposes.Trial registration numberClinicalTrials.gov Identifier:NCT02759939.

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.

Background Providing appropriate educational resources to patients with head and neck cancer (HNC) is important but challenging. The aim of this study was to determine Australian clinicians' perceptions of currently used HNC information resources. Methods A purpose-designed questionnaire was disseminated electronically to clinician members of the Australian and New Zealand Head and Neck Cancer Society (ANZHNCS) and The Australian Society of Otolaryngology Head and Neck Surgery (ASOHNS). Results Of the 648 clinicians invited, 112 responded to the survey (17.3% response rate). Overall, 85% utilized written information as their primary mode of patient education and 49% received information on treatment details. Areas for improvement include information provision, pain management, emerging risk factors, survivorship and side effects. The majority (66%) of clinicians had a preference for internet patient education materials. Conclusions Clinicians predominantly utilized written HNC information rather than multimedia or interactive resources. However, they expressed the desire to be able to deliver HNC information resources via an internet-based platform covering the psychosocial effects of treatment.

© The Author 2017. Published by Oxford University Press. All rights reserved. Adults with low literacy are less empowered to take care of their health, have poorer health outcomes and higher healthcare costs. We facilitated partnerships between adult literacy teachers and community health providers to deliver a health literacy training program in adult basic education classrooms. Following course completion we interviewed 19 adult education teachers (15 delivering the health literacy program; 4 delivering standard literacy classes) and four community health providers (CHPs) about their experiences, and analysed transcripts using Framework analysis. Written feedback from eight teachers on specific course content was added to the Framework. Health literacy teachers reported a noticeable improvement in their student's health behaviours, confidence, vocabulary to communicate about health, understanding of the health system and language, literacy and numeracy skills. CHP participation was perceived by teachers and CHPs as very successful, with teachers and CHPs reporting they complemented each other's skills. The logistics of coordinating CHPs within the constraints of the adult education setting was a significant obstacle to CHP participation. This study adds to existing evidence that health is an engaging topic for adult learners, and health literacy can be successfully implemented in an adult basic learning curriculum to empower learners to better manage their health. Health workers can deliver targeted health messages in this environment, and introduce local health services. Investment in adult literacy programs teaching health content has potential both to meet the goals of adult language and literacy programs and deliver health benefit in vulnerable populations.

Shared decision making (SDM) is now firmly established within national clinical standards for accrediting hospitals, day procedure services, public dental services and medical education in Australia, with plans to align general practice, aged care and disability service. Implementation of these standards and training of health professionals is a key challenge for the Australian health sector at this time. Consumer involvement in health research, policy and clinical service governance has also increased, with a major focus on encouraging patients to ask questions during their clinical care. Tools to support shared decision making are increasingly used but there is a need for more systemic approaches to their development, cultural adaptation and implementation. Sustainable solutions to ensure tools are kept up-to-date with the best available evidence will be important for the future.

This RCT with two parallel arms will evaluate the efficacy of an internet-delivered transdiagnostic cognitive behavioural therapy (iCBT) intervention for the treatment of clinical depression and/or anxiety in early stage cancer survivors. Early stage cancer survivors will be recruited via the research arm of a not-for-profit clinical research unit and randomised to an intervention (iCBT) group or a ‘treatment as usual’ (TAU) control group. The minimum sample size for each group is 45 people (assuming effect size > 0.6, power of 80%, and alpha at .05), but 10% more will be recruited to account for attrition. A solitary or cumulative diagnosis(es) of Major Depressive Episode (current), Generalised Anxiety Disorder, Illness Anxiety Disorder, Panic Disorder, Agoraphobia, and/or Adjustment disorder will be determined using modules from the Anxiety Disorders Interview Schedule for DSM-5. Depression and anxiety levels with be measured via the total score of the Hospital Anxiety and Depression scale (HADS-T), the primary outcome measure. Secondary measures will include the Kessler 10 to measure general distress, the Fear of Cancer Recurrence Inventory (FCRI) to measure the specific fear of cancer recurrence and the Functional Assessment of Cancer Therapy, General Version 4 (FACT-G) for self-report of physical, social, emotional and functional well-being. iCBT participants will complete the measures before lessons 1 and 5, at post-treatment and at 3-month follow-up. The TAU group will complete similar measures at weeks 1, 8 and 16 of the waiting period. Program efficacy will be determined using intent-to-treat mixed models. Maintenance of gains will be assessed at 3-month follow-up. Mediation analyses using PROCESS will be used to examine the association between change in depressive and anxious symptoms over time and changes in FCRI and FACT-G QOL in separate analysis. This is the first RCT looking at iCBT specifically for clinical depression and/or anxiety in a cancer population. Findings will help to direct the role of iCBT in streamlined psycho-social care pathways. Australian New Zealand Clinical Trials Registry: ACTRN12616000231448, registered 19th February 2016 ( www.anzctr.org.au ). This trial protocol is in compliance with the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) guidelines.

We developed an eight-lesson internet-delivered CBT (iCBT) program targeting anxiety and depression in early-stage cancer and cancer survivors. To explore the acceptability of the program, we showed volunteers the first two lessons and asked for their views. Focus groups (n = 3) and individual interviews (n = 5) were undertaken with 15 participants (11 survivors) with mainly breast (11 of the 15) cancer, who had reviewed intervention materials. Participants were asked to consider the acceptability of the iCBT program content and implementation design (timing, duration). Semi-structured questions guided discussion. Thematic analysis was conducted of participant reactions to the acceptability and/or suitability of materials created for use in a psychological intervention. We took a data-driven (inductive) approach to semantic theme development across the data set. Participants reported high acceptability of the internet delivery format, good engagement and user-friendly material. Participants were broadly supportive of combining depression and anxiety iCBT resources for early-stage cancer patients and survivors. Participants further indicated that a separate course would be needed to address the needs of patients with advanced stage disease. Participants welcomed the general development of an internet-delivered CBT intervention program to treat patients with clinical depression and/or anxiety. Furthermore, the sessions reviewed were highly acceptable to all participants. Study findings informed researchers on the development of iCBT resources for the cancer community.

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. Electronic supplementary material The online version of this article (doi:10.1186/s12939-016-0373-1) contains supplementary material, which is available to authorized users.

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.

Migrants diagnosed with cancer in Australia have high unmet need and poorer psychosocial outcomes than comparable Australian-born patients. It is possible that migrants also experience worse coordination of their cancer care. The purpose of this study was to describe migrant patients’ experience of care coordination to inform the development of items for inclusion in a cancer care coordination questionnaire sensitive to the specific cultural needs of these patients. Eighteen Chinese (Mandarin and Cantonese), Arabic and Macedonian patients and carers from two metropolitan cancer centres in Sydney, Australia, were recruited. Two focus groups and 11 telephone interviews were conducted in the participants’ own language. A semi-structured interview format was utilised to qualitatively explore participants’ experiences of cancer care coordination during treatment. Themes were identified using a thematic analysis. Cancer care was generally perceived to be well coordinated. Four themes were identified that impacted on the quality of care coordination as a direct result of a patient’s migrant status: (1) the impact of language on understanding and information access, (2) the role of interpreters and (3) access to services and (4) understanding the roles and responsibilities of the team. Despite their care generally being well coordinated, migrants require additional assistance such as information in a form appropriate to their language proficiency and understanding of the new health system. Development of a culturally specific measure of cancer care coordination will enable evaluation of future strategies to improve care.

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.