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Refereed/Peer-reviewed Background: There is a recognized need for evidence to inform breast cancer screening guidelines and services for transgender people, who face barriers to accessing appropriate and inclusive health care. Aims: This review summarized evidence for breast cancer risk and screening guidelines in transgender individuals, including the potential impact of gender-affirming hormone therapy (GAHT); factors that may influence screening decision-making and behaviors; and considerations for providing culturally safe, high-quality screening services. Methods: A protocol was developed based on the Joanna Briggs Institute scoping review methodology. Searches were performed in Medline, Emcare, Embase, Scopus, and the Cochrane Library for articles reporting information on the provision of culturally safe, high-quality breast cancer screening services for transgender people. Results: We identified 57 sources for inclusion: 13 cross-sectional studies, 6 case reports, 2 case series, 28 review or opinion articles, 6 systematic reviews, 1 qualitative study, and 1 book chapter. Evidence on rates of breast cancer screening among transgender people and the association between GAHT and breast cancer risk was inconclusive. Factors negatively associated with cancer screening behaviors included socioeconomic barriers, stigma, and lack of health provider awareness of transgender health issues. Breast cancer screening recommendations varied and were generally based on expert opinion due to the lack of clear evidence. Considerations for providing culturally safe care to transgender people were identified and mapped to the areas of workplace policies and procedures, patient information, clinic environment, professional conduct, communication, and knowledge and competency. Discussion: Screening recommendations for transgender individuals are complicated by the lack of robust epidemiological data and clear understanding of the role GAHT may play in breast cancer pathogenesis. Guidelines have been developed based on expert opinion and are subsequently not uniform or evidence based. Further work is required to clarify and consolidate recommendations.

Refereed/Peer-reviewed

Background There exists scant evidence on the optimal approaches to integrating patient-reported outcomes (PROs) in clinical practice. This study gathered oncology practitioners’ experiences with implementing PROs in cancer care. Methods Between December 2019 and June 2020, we surveyed practitioners who reported spending > 5% of their time providing clinical care to cancer patients. Respondents completed an online survey describing their experiences with and barriers to using PROs in clinical settings. Results In total, 362 practitioners (physicians 38.7%, nurses 46.7%, allied health professionals 14.6%) completed the survey, representing 41 countries (Asia–Pacific 42.5%, North America 30.1%, Europe 24.0%, others 3.3%). One quarter (25.4%) identified themselves as “high frequency users” who conducted PRO assessments on > 80% of their patients. Practitioners commonly used PROs to facilitate communication (60.2%) and monitor treatment responses (52.6%). The most commonly reported implementation barriers were a lack of technological support (70.4%) and absence of a robust workflow to integrate PROs in clinical care (61.5%). Compared to practitioners from high-income countries, more practitioners in low-middle income countries reported not having access to a local PRO expert (P

Purpose Evidence supports the role of prescribed exercise for cancer survivors, yet few are advised to exercise by a healthcare practitioner (HCP). We sought to investigate the gap between HCPs’ knowledge and practice from an international perspective. Methods An online questionnaire was administered to HCPs working in cancer care between February 2020 and February 2021. The questionnaire assessed knowledge, beliefs, and practices regarding exercise counselling and referral of cancer survivors to exercise programs. Results The questionnaire was completed by 375 participants classified as medical practitioners (42%), nurses (28%), exercise specialists (14%), and non-exercise allied health practitioners (16%). Between 35 and 50% of participants self-reported poor knowledge of when, how, and which cancer survivors to refer to exercise programs or professionals, and how to counsel based on exercise guidelines. Commonly reported barriers to exercise counselling were safety concerns, time constraints, cancer survivors being told to rest by friends and family, and not knowing how to screen people for suitability to exercise (40–48%). Multivariable logistic regression models including age, gender, practitioner group, leisure-time physical activity, and recall of guidelines found significant effects for providing specific exercise advice (χ2(7) = 117.31, p χ2(7) = 65.13, p 2(7) = 58.69, p χ2(7) = 72.76, p Conclusion Additional education and practical support are needed to equip HCPs to provide cancer survivors with exercise guidelines, resources, and referrals to exercise specialists.

Aim: To determine feasibility and acceptability of completing PROs questionnaires at completion and 1 year after curative cancer treatment. Methods: Patients assessed in a nurse-led end of treatment survivorship clinic, at a tertiary referral centre, recruited between October 2015 and July 2016 were mailed a survey at baseline and at 12-month follow-up. The survey included validated PRO questionnaires. A target response rate for feasibility, defined as the proportion of the eligible population approached that completed the survey, was set at 70%. Qualitative feedback regarding the survey was collected from participants. Results: Of the 47 eligible patients approached, 34 (72.4%) agreed to participate with 29 (61.9%) completing the survey at baseline, and 21 (44.7%) at follow-up. Respondents lost to follow-up at 12 months had clinically meaningful lower scores on all QLQ-C30 functioning scales and 8 out of 9 symptom scales/items. Qualitative feedback from survey respondents indicated the content was relevant and acceptable. Participants expressed willingness to complete a similar survey approximately once per year and a higher preference for completing the survey in hard copy compared with online. Conclusions: Cancer survivors are willing to provide information on a range of PROs, but those with higher needs were the ones less likely to complete surveys. There is scope to improve the response rate and representativeness of the patient cohort captured. Future research should identify strategies to optimise recruitment when collecting PROs data from cancer survivors. Refereed/Peer-reviewed

This study investigated the individual variability in oral tactile sensitivity considering touch, by means of Von Frey Hair monofilaments (VFH) and spatial resolution, using the grating orientation test (GOT). The relationships of the two measures with 6-n-propylthiouracil (PROP) responsiveness and fungiform papillae density and size were investigated. One hundred and forty-four subjects (48.6% women, aged 18-30) participated in the study. VFH and GOT thresholds were assessed by three-down/one-up staircase method. Responsiveness to 3.2 mM PROP was assessed on the general Labeled Magnitude Scale. Fungiform papillae density (FPD) and size were determined from automated counting. VFH thresholds appeared unsuitable to reveal individual variation in responsiveness to point-pressure on the tongue. The frequency of GOT thresholds approximated a normal distribution and covered the whole range of variation, thus indicating an ability to measure individual variation in oral tactile sensitivity. No significant linear correlations were found between any of the oral tactile sensitivity measures and PROP responsiveness, FPD total and size class. VFH and GOT thresholds were not significantly associated. Agglomerative hierarchical clustering was used to classify participants for their PROP responsiveness, total FPD and GOT threshold. Three clusters were identified, C1 (n = 67), Cl2 (n = 42), and Cl3 (n = 35), differing for PROP responsiveness and FPD only. Results encourage future studies to explore association between GOT and both perception and preference for different food texture. Furthermore, deeper investigation of individual variability in sensitivity to different types of oral tactile stimuli would be helpful to capture differences in tactile sensitivity among the most sensitive individuals.

There is a recognised need for reported national data that inform health policy, health professions, and consumers about the wellbeing of Australians with cancer and other chronic conditions. International initiatives have demonstrated the viability and benefits of utilising population-based cancer registries to monitor the prevalence and trajectory of health-related quality of life (HRQOL) outcomes among people with cancer. Establishing a similar level of monitoring in Australia would require timely access to health data collected by publicly funded, population-based cancer registries, and the capacity to link this information across jurisdictions. Combining information from different sources via data linkage is an efficient and cost-effective way to maximise how data are used to inform population health and policy development. However, linking health datasets has historically been highly restricted, resource-intensive, and costly in Australia due to complex and outdated legislative requirements, duplicative approval processes, and differing policy frameworks in each state and territory. This has resulted in significant research waste due to underutilisation of existing data, duplication of research efforts and resources, and data not being translated into decision-making. Recognising these challenges, from 2015 to 2017 the Productivity Commission investigated options for improving data availability and use in Australia, considering factors such as privacy, security, and intellectual property. The inquiry report recommended significant reforms for Australian legislation, including the creation of a data sharing and release structure to improve access to data for research and policy development purposes. This paper discusses (1) opportunities in HRQOL research enabled by data linkage, (2) barriers to data access and use in Australia and the implications for waste in HRQOL research, and (3) proposed legislative reforms for improving data availability and use in Australia.

Purpose Circadian rhythms control a wide range of physiological processes and may be associated with fatigue, depression, and sleep problems. We aimed to identify subgroups of breast cancer survivors based on symptoms of fatigue, insomnia, and depression; and assess whether circadian parameters (i.e., chronotype, amplitude, and stability) were associated with these subgroups over time. Methods Among breast cancer survivors, usual circadian parameters were assessed at 3–4 months after diagnosis (T0), and symptoms of fatigue, depression, and insomnia were assessed after 2–3 years (T1, N = 265) and 6–8 years (T2, N = 169). We applied latent class analysis to classify survivors in unobserved groups (“classes”) based on symptoms at T1. The impact of each of the circadian parameters on class allocation was assessed using multinomial logistic regression analysis, and changes in class allocation from T1 to T2 using latent transition models. Results We identified 3 latent classes of symptom burden: low (38%), moderate (41%), and high (21%). Survivors with a late chronotype (“evening types”) or low circadian amplitude (“languid types”) were more likely to have moderate or high symptom burden compared to “morning types” and “vigorous types,” respectively. The majority of survivors with moderate (59%) or high (64%) symptom burden at T1 had persistent symptom burden at T2. Implications for Cancer Survivors A late chronotype and lower circadian amplitude after breast cancer diagnosis were associated with greater symptoms of fatigue, depression, and insomnia at follow-up. These circadian parameters may potentially be novel targets in interventions aimed at alleviating symptom burden among breast cancer survivors.

Aim: To develop evidence-based recommendations for provision of culturally safe, high-quality services for breast cancer screening for transgender people. Design: The scoping review will follow the JBI methodological guidance for scoping reviews. Methods: A search using MEDLINE (PubMed), Embase (Ovid), Scopus, the Cochrane Library, including the Cochrane Methodology Register, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and the World Health Organization, Australia Government Department of Health and Google Scholar will be undertaken. The review will include people of any age and ethnicity defined in the source of evidence as transgender. The review will include individuals who have used gender-affirming interventions or not and sources of evidence that report information relevant to the provision of culturally safe, high-quality breast cancer screening services for transgender people. English language sources of evidence published from database inception with information from any country will be eligible for inclusion. Sources will be screened for inclusion by three independent reviewers. Results will be extracted using a purpose-built tool and presented in relation to the review questions and objective in the final report using tables, figures and corresponding narrative. Project funding was approved by the Australian Government Department of Health in June 2020. Discussion: There are a range of factors that impact on the equity of health access and outcomes for people who are not cisgender. Transgender people are at risk of breast cancer but there is relatively little evidence about how their risks may or may not differ substantially from cis-gendered individuals and little guidance for health providers to ensure inclusive, culturally safe, high-quality breast cancer screening services for both transgender males, transgender females and gender diverse people who may not identify as male or as female. Impact: It is important to provide culturally safe, high-quality services for breast cancer screening for transgender people. Refereed/Peer-reviewed

Background Patient-reported outcome measures (PROMs) or patient-reported outcomes (PROs) are used by clinicians in everyday clinical practice to assess patients’ perceptions of their own health and the healthcare they receive. By providing insight into how illness and interventions impact on patients’ lives, they can help to bridge the gap between clinicians’ expectations and what matters most to the patient. Given increasing focus on patient-centred care, the objective of this meta-synthesis was to summarise the qualitative evidence regarding patients’ perspectives and experiences of the use of PROMs in clinical care. Methods A systematic search of the following databases was undertaken in August 2020: Medline, EMBASE, EMCARE, PsychINFO, Scopus and the Cochrane Library. This review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Methodological quality of the included studies was assessed using the Critical Appraisal Skills Programme checklist for qualitative research (CASP). A meta-ethnographic approach was used for data extraction and meta-synthesis of findings (PROSPERO registration: CRD42020202506). Results Fourteen studies from a range of countries with differing qualitative research methodologies were identified. Three themes were identified, namely ‘patient preferences regarding PROMs’, ‘patient perceived benefits’ and ‘barriers to patient engagement with PROMs’. The perspectives of patients suggested they preferred PROMs that were simple and relevant to their conditions and found benefits in the way they facilitated self-reflection and effective communication with their clinicians. Patients, however, questioned the relevance of some individual questions and purpose. Conclusion PROMs can be a useful tool in the clinical setting by enabling individualisation and patient centred care. This meta-synthesis provides insights into what patients find beneficial as well as barriers to their engagement, highlighting the importance of educating patients about PROMs.

Circadian rhythms control a wide range of physiological processes and may be associated with fatigue, depression, and sleep problems. We aimed to identify subgroups of breast cancer survivors based on symptoms of fatigue, insomnia, and depression; and assess whether circadian parameters (i.e., chronotype, amplitude, and stability) were associated with these subgroups over time.Among breast cancer survivors, usual circadian parameters were assessed at 3-4 months after diagnosis (T0), and symptoms of fatigue, depression, and insomnia were assessed after 2-3 years (T1, N = 265) and 6-8 years (T2, N = 169). We applied latent class analysis to classify survivors in unobserved groups ("classes") based on symptoms at T1. The impact of each of the circadian parameters on class allocation was assessed using multinomial logistic regression analysis, and changes in class allocation from T1 to T2 using latent transition models.We identified 3 latent classes of symptom burden: low (38%), moderate (41%), and high (21%). Survivors with a late chronotype ("evening types") or low circadian amplitude ("languid types") were more likely to have moderate or high symptom burden compared to "morning types" and "vigorous types," respectively. The majority of survivors with moderate (59%) or high (64%) symptom burden at T1 had persistent symptom burden at T2.A late chronotype and lower circadian amplitude after breast cancer diagnosis were associated with greater symptoms of fatigue, depression, and insomnia at follow-up. These circadian parameters may potentially be novel targets in interventions aimed at alleviating symptom burden among breast cancer survivors.

Highlights • Variation in sensory and physicochemical profiles not explained by production method. • Differences instead were discussed to be due to pre and post processing methods. • Overall consumer liking could be optimised by mixing different production techniques. • Five patterns of consumer liking identified, related to sensory characteristics., This study aimed to investigate the sensory and physicochemical differences of a range of commercial non-alcoholic lagers, as well as their influence on overall liking. Using physicochemical analysis and modified quantitative descriptive analysis (QDA) with a trained panel (n = 10) eighteen commercial non-alcoholic lagers, made using different production methods, were assessed. A subset (eleven), representing the sensory space were also assessed for hedonic liking using consumers (n = 104). Overall, it showed a clear variety of non-alcoholic lagers were selected, with different clusters of samples found with identifiable characteristics. Production methods were explored as a possible explanation for the differences in characteristics, however these did not fully explain the clusters and therefore other factors, such as pre or post processing methods are discussed. In terms of overall liking, five clusters of consumers were discovered with different patterns of liking, confirming that a wide range of non-alcoholic lagers are needed to satisfy all consumers.

Background: Many hospitals have implemented COVID-19 risk screening of staff and visitors at point of entry. Little is known about staff perspectives of the screening implementation process. Aims: To investigate the experiences of staff conducting screening at a metropolitan hospital for a novel virus with constantly evolving messaging and knowledge, and to identify potential improvements to screening procedures. Methods: An exploratory cross-sectional survey study of 65 nurses who conducted screening at the hospital. The survey contained quantitative and open-ended questions. Descriptive analyses were conducted for quantitative data. Responses from open-ended questions were analysed using thematic analysis. Findings: Few survey participants (20%) received training prior to screening and under half (47%) felt prepared. A majority of participants rated visitors and staff as often or always willing to complete screening questions and have their temperature checked. Approximately half of participants rated their overall experience of screening as positive and most (81.5%) believed the questions were successful in directing at risk people for COVID-19 testing. Themes identified were: hospital environment and screening station setup; necessity for clear information; difficulties and discomfort; and screening is valuable psychologically and for risk reduction. Discussion: Suggested improvements included training for screening staff, clearly marked screening queues, additional signage explaining requirements, mandatory temperature checking, and separate entry points for staff and visitors. Conclusion: Participants felt their overall experience of conducting screening was more positive than negative and screening provided positive psychological value for staff and visitors; however, various ways to improve screening processes for staff were identified. What is already known about this topic? Physical distancing and infection prevention and control measures contribute to reducing COVID-19 infections, therefore to slow the spread of COVID-19 and ease the impact on health systems, screening of staff and visitors for possible viral exposure prior to entry was implemented at healthcare facilities across the world. However, little is known about staff perspectives of the screening implementation process. What this paper adds: Front door screening was perceived to reduce risk and increase public confidence. Nursing staff experiences suggest a need for improvements to the process, such as increased training for staff performing the screening, increased signage and clear screening expectations for visitors prior to reaching screening stations, and changes to screening station set up.

Consumer sensory evaluation, aroma release analysis and biophysical protein analysis were used to investigate the effect of ethanol on the release and perception of flavour in beer (lager and stout) at different ethanol levels (0 and 5% ABV). Consumer study results showed no significant differences in orthonasal perception, yet retronasal results showed that 0% lager was perceived as maltier with reduced fruitiness, sweetness, fullness/body and alcohol warming sensation (p P, the presence of α-amylase selectively reduces the headspace concentration of hydrophobic compounds. It was found that ethanol has a subtle inhibitory effect on the binding of hydrophobic compounds to α-amylase, thereby increasing their headspace concentration in the 5% ABV as compared to the 0% beers. This synergistic ethanol * saliva effect is attributed to the changes in the conformation of α-amylase due to ethanol-induced denaturation. It is hypothesised that the partially unfolded protein structures have a lower number of hydrophobic pockets, leading to a lower capacity to entrap hydrophobic aroma compounds. This supports the hypothesis that ethanol * saliva interactions directly impact the sensory and flavour properties of beer, which would provide a basis for further investigations in reformulation of 0% ABV drinks.

This review, commissioned by the NSW Cancer Institute, highlights key trends and common elements of cancer control plans from Australia and countries with health systems similar to NSW. It will be used as the basis for a discussion paper in the development of the next NSW Cancer Plan. A clear message from the review is the need for plans to be tailored to the local context, to consider the most prevalent cancers and at risk populations, to respond to the needs of stakeholders, to have detailed actionable outcomes, to be appropriately resourced and to have a clear plan for implementation and evaluation. Common elements of included plans were: prevention, screening and early detection, treatment, survivorship and palliative care, coordination between services, approaches to specific populations, research and training, workforce, implementation, evaluation and monitoring, and trends for cancer control

Purpose Attrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates. Methods Sociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time. Results Participants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders. Conclusions Cancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants. Implications for Cancer Survivors Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged. Electronic supplementary material The online version of this article (10.1007/s11764-019-00793-7) contains supplementary material, which is available to authorized users.

Background: Breast cancer (BC) incidence in Australian women aged 45 to 64 years ('middle-aged') has tripled in the past 50 years, along with increasing alcohol consumption and obesity in middle-age women. Alcohol and obesity have been individually associated with BC but little is known about how these factors might interact. Chronic psychological stress has been associated with, but not causally linked to, BC. Here, alcohol could represent the 'missing link' - reflecting self-medication. Using an exploratory cross-sectional design, we investigated inter-correlations of alcohol intake and overweight/obesity and their association with BC incidence in middle-aged women. We also explored the role of stress and various lifestyle factors in these relationships. Methods: We analysed population data on BC incidence, alcohol consumption, overweight/obesity, and psychological stress. A case control study was conducted using an online survey. Cases (n = 80) were diagnosed with BC and controls (n = 235) were women in the same age range with no BC history. Participants reported lifestyle data (including alcohol consumption, weight history) over consecutive 10-year life periods. Data were analysed using a range of bivariate and multivariate techniques including correlation matrices, multivariate binomial regressions and multilevel logistic regression. Results: Ecological inter-correlations were found between BC and alcohol consumption and between BC and obesity but not between other variables in the matrix. Strong pairwise correlations were found between stress and alcohol and between stress and obesity. BMI tended to be higher in cases relative to controls across reported life history. Alcohol consumption was not associated with case-control status. Few correlations were found between lifestyle factors and stress, although smoking and alcohol consumption were correlated in some periods. Obesity occurring during the ages of 31 to 40 years emerged as an independent predictor of BC (OR 3.5 95% CI: 1.3-9.4). Conclusions: This study provides ecological evidence correlating obesity and alcohol consumption with BC incidence. Case-control findings suggest lifetime BMI may be important with particular risk associated with obesity prior to 40 years of age. Stress was ecologically linked to alcohol and obesity but not to BC incidence and was differentially correlated with alcohol and smoking among cases and controls. Our findings support prevention efforts targeting weight in women below 40 years of age and, potentially, lifelong alcohol consumption to reduce BC risk in middle-aged women. Refereed/Peer-reviewed

Exposure to smoke emitted from wildfire and planned burns (i.e., smoke events) has been associated with numerous negative health outcomes, including respiratory symptoms and conditions. This rapid review investigates recent evidence (post-2009) regarding the effectiveness of public health messaging during smoke events. The objectives were to determine the effectiveness of various communication channels used and public health messages disseminated during smoke events, for general and at-risk populations. A search of 12 databases and grey literature yielded 1775 unique articles, of which 10 were included in this review. Principal results were: 1) Smoke-related public health messages are communicated via a variety of channels, but limited evidence is available regarding their effectiveness for the general public or at-risk groups. 2) Messages that use simple language are more commonly recalled, understood, and complied with. Compliance differs according to socio-demographic characteristics. 3) At-risk groups may be advised to stay indoors before the general population, in order to protect the most vulnerable people in a community. The research included in this review was observational and predominantly descriptive, and is therefore unable to sufficiently answer questions regarding effectiveness. Experimental research, as well as evaluations, are required to examine the effectiveness of modern communication channels, channels to reach at-risk groups, and the ‘stay indoors’ message. Refereed/Peer-reviewed

Purpose: This systematic narrative review describes and compares the development and operational approaches of monitoring systems without a clinical care component that collect patient-reported outcome (PRO) data from cancer survivors. Methods: Searches were conducted using Medline, PubMed, PsycINFO, the Cochrane Library, CINAHL, Scopus, Joanna Briggs Institute EBP Database and Google Scholar (Advanced). Sources of grey literature and websites of relevant organisations were also searched for relevant published and unpublished material. Articles were included if they described the development (including piloting) of monitoring systems with ongoing recruitment that collect PRO at more than one time point, from 6 months post-diagnosis onward. Results: The initial searches returned 7290 unique citations. After screening titles and abstracts, 39 full-text articles were retrieved for more detailed examination. Eleven articles were included in the review, representing seven international monitoring systems. Systems varied in their scope, implementation process, governance and administration, recruitment and data collection, consent rates, PRO collection, use of PRO and translation strategies. Conclusions: The most suitable approach for setting-up and implementing a monitoring system for ongoing surveillance will differ depending on the unique requirements, aims and level of resourcing available within a particular context. Better specification and consideration of how PRO data will be used, for what purpose, and by whom, is required to inform effective translational strategies to improve outcomes for cancer survivors. Implications for Cancer Survivors: The findings from this review may inform the future development of survivorship monitoring systems in varied environments, which in turn may improve practices that lead to better outcomes for survivors. Refereed/Peer-reviewed

BACKGROUND Core outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. OBJECTIVE This study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. METHODS In Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. RESULTS As of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. CONCLUSIONS Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/14544

A low alcohol beer evoking similar sensory enjoyment as its higher alcohol counterpart is potentially an attractive proposition to breweries for increased sales volumes, as well as consumers due to health and societal reasons. This study aimed to determine the influence of ethanol on the temporal sensory characteristics and liking of beer as perceived by beer consumers. A commercial 0% ethanol concentration lager was spiked with ethanol to different concentrations (0.5%, 2.8%, 5% ethanol). Consumers (n = 101) indicated their liking using temporal liking (TL) methodology (rated throughout consumption) and overall liking (rated at the end of consumption). Consumers also denoted the sensory properties perceived using temporal Check-All-That-Apply (TCATA). Overall, liking data divided consumers into 3 clusters with different patterns of liking. As ethanol concentration increased from 0 to 5%, the TL time that best predicted overall liking shifted from 60 s to 10–20 s indicating that liking of higher alcohol products was decided earlier on in consumption. Data suggested that in a lower ethanol beer, a liking judgement may not be stabilized until later in the evaluation, while in high ethanol beers, a liking judgement, either positive or negative, stabilised more rapidly. TCATA results revealed different temporal sensory profiles among the different ethanol concentrations. As ethanol concentration increased, the citation of sweetness, fullness/body and alcohol warming sensation increased. However, the relationship between TCATA citations and TL varied among the three clusters highlighting that, in relation to ethanol concentration, different negative and positive sensory drivers of preference exist for different segments of consumers.

Purpose Attrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates. Methods Sociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time. Results Participants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders. Conclusions Cancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants. Implications for Cancer Survivors Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged.

The Australian Aboriginal and Torres Strait Islander (Aboriginal) population has a higher age-standardised cancer mortality rate and a significantly lower 5-year survival rate for all cancers than the non-Aboriginal population. Aboriginal people from regional and remote South Australia and the Northern Territory, are often required to travel to Adelaide to access specialist cancer care services. The burden and expenses associated with transport and accommodation and cultural and linguistic factors have been identified as barriers to accessing medical treatment and health services. In collaboration with community and stakeholders, Cancer Council South Australia led the development of the Cancer Healing Messages flipchart and patient flyer to assist health professionals in explaining cancer and the cancer journey to Aboriginal cancer patients and their families. This study examined the usage, acceptability and perceived usefulness of the resources, barriers to uptake, and strategies to improve their utilisation and sustainability.An evaluation survey was conducted among Aboriginal Health Workers (AHWs) and other health professionals working with Aboriginal clients in South Australia (n=18). Participants indicated whether they agreed that the resources are valuable, culturally appropriate, helpful for explaining aspects of cancer to Aboriginal cancer patients, and useful with regard patient outcomes, how frequently they used or would use the resources for information, and how they use the flipchart in practice. Participants were also asked to report any usage barriers.The resources were considered useful, valuable and culturally appropriate by almost all participants; however, there was a discrepancy between intentions to use the resources and actual uptake, which was low. The most commonly reported barriers related to appropriateness for certain patients and lack of availability of resources in some contexts.The Cancer Healing Messages flipchart and patient flyer are perceived as appropriate, valuable, and useful tools for AHWs. A long-term strategy and clear implementation plan involving education, training and promotion of the materials, is required to achieve broad reach and sustainable utilisation of the Cancer Healing Messages flipchart and patient flyer.

Introduction The Australian Aboriginal and Torres Strait Islander (Aboriginal) population has a higher age-standardised cancer mortality rate and a significantly lower 5-year survival rate for all cancers than the non-Aboriginal population. Aboriginal people from regional and remote South Australia and the Northern Territory, are often required to travel to Adelaide to access specialist cancer care services. The burden and expenses associated with transport and accommodation and cultural and linguistic factors have been identified as barriers to accessing medical treatment and health services. In collaboration with community and stakeholders, Cancer Council South Australia led the development of the Cancer Healing Messages flipchart and patient flyer to assist health professionals in explaining cancer and the cancer journey to Aboriginal cancer patients and their families. This study examined the usage, acceptability and perceived usefulness of the resources, barriers to uptake, and strategies to improve their utilisation and sustainability. Methods An evaluation survey was conducted among Aboriginal Health Workers (AHWs) and other health professionals working with Aboriginal clients in South Australia (n=18). Participants indicated whether they agreed that the resources are valuable, culturally appropriate, helpful for explaining aspects of cancer to Aboriginal cancer patients, and useful with regard patient outcomes, how frequently they used or would use the resources for information, and how they use the flipchart in practice. Participants were also asked to report any usage barriers. Results The resources were considered useful, valuable and culturally appropriate by almost all participants; however, there was a discrepancy between intentions to use the resources and actual uptake, which was low. The most commonly reported barriers related to appropriateness for certain patients and lack of availability of resources in some contexts. Conclusion The Cancer Healing Messages flipchart and patient flyer are perceived as appropriate, valuable, and useful tools for AHWs. A long-term strategy and clear implementation plan involving education, training and promotion of the materials, is required to achieve broad reach and sustainable utilisation of the Cancer Healing Messages flipchart and patient flyer.

Background Core outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. Objective This study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. Methods In Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. Results As of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. Conclusions Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. International Registered Report Identifier (IRRID) DERR1-10.2196/14544

Purpose: The purpose of this investigation was to evaluate the social work service at an accommodation facility for people receiving cancer treatment away from home with a focus on distress, impact of support, and type of assistance received from the social work service. Method: Guests who stayed at the Cancer Council Lodge during June 2015 were mailed a questionnaire collecting information about level of distress upon arrival and departure, impact of support in several areas, and what the service assisted them with specifically. Results: The sample comprised 149 guests. Social work contact (n = 19) was associated with greater reduction in distress between arrival and departure compared with no contact (n = 56). Contact with a social worker was associated with greater odds of agreeing or strongly agreeing that guests felt supported in 6 out of 10 areas assessed. These areas were managing the challenges related to cancer, approaching support services, asking questions of healthcare teams, accessing support services, coping with strong emotions, and understanding reactions of family and friends. The most common types of support received were emotional and informational support. Conclusions: This study describes some of benefits of providing social work services to people receiving cancer treatment away from home and has implications for provision of social work service resources in similar settings. Further research could investigate the impact of this service in similar settings using randomised controlled trials to better account for potential biases. Research in this area has potential to inform program development and policy. Refereed/Peer-reviewed

Objective This rapid review summarizes best available evidence on consumers’ needs and preferences for information about healthcare, with a focus on the Australian context. Three questions are addressed: 1) Where do consumers find and what platform do they use to access information about healthcare? 2) How do consumers use the healthcare information that they find? 3) About which topics or subjects do consumers need healthcare information? Methods A hierarchical approach was adopted with evidence first sought from reviews then high quality studies using Medline (via PubMed), CINAHL, Embase, the JBI Database of Systematic Reviews and Implementation Reports, the Campbell Collaboration Library of Systematic Reviews, EPPI-Centre, and Epistemonikos. Results Twenty-eight articles were included; four systematic reviews, three literature reviews, thirteen quantitative studies, six qualitative studies, and two mixed methods studies. Conclusion Consumers seek health information at varying times along the healthcare journey and through various modes of delivery. Complacency with historical health information modes is no longer appropriate and flexibility is essential to suit growing consumer demands. Practice implications Health information should be readily available in different formats and not exclusive to any single medium.

Background: Although most Australians are unaware of the risk, there is strong evidence for a direct link between alcohol consumption and many types of cancer. Warning labels on alcohol products have been proposed as a cost-effective strategy to inform the community of this health risk. We aimed to identify how Australians might respond to such an approach. Methods: We conducted a national online survey canvassing responses to four separate cancer warning messages on labels. The graphically presented messages were informed by qualitative data from a series of focus groups among self-identified 'light-to-moderate' drinkers. For each label, participants were asked their level of agreement with impact statements about raising awareness, prompting conversation, influencing drinking behaviour and educating others about cancer risk. We analysed responses according to demographic and other factors, including self-reported drinking behaviour (using the 3-item Alcohol Use Disorder Test - AUDIT-C - scores). Results: Approximately 1600 participants completed the survey, which was open to all Australian adults over a period of 1 month in 2014. Overall, the labels were well received, with the majority (>70 %) agreeing all labels could raise awareness and prompt conversations about the cancer risk associated with alcohol. Around 50 % or less agreed that the labels could influence drinking behaviour, but larger proportions agreed that the labels would prompt them to discuss the issue with family and friends. Although sex, AUDIT-C score and age were significantly associated with agreement on bivariate analysis, multivariate analyses demonstrated that being inclined to act upon warning label recommendations in general was the most important predictor of agreement with all of the impact statements. Having a low AUDIT-C score also predicted agreement that the labels might prompt behaviour change in friends. Conclusions: The findings suggest that providing detailed warnings about cancer risk on alcohol products is a viable means of increasing public awareness of the health risks associated with alcohol consumption. Further research is needed to explore the ability of such warnings to influence behavioural intentions and actual drinking behaviour. Refereed/Peer-reviewed

Objective: This study aimed to investigate factors that inhibit and facilitate discussion about alcohol between general practitioners (GPs) and patients. Design: Data analysis from a cross-sectional survey. Setting and participants: 894 GP delegates of a national health seminar series held in five capital cities of Australia in 2014. Main outcome measures Likelihood of routine alcohol enquiry; self-assessed confidence in assessing and managing alcohol issues in primary healthcare. Results: Most GPs (87%) reported that they were likely to routinely ask patients about their alcohol consumption and had sufficient skills to manage alcohol issues (74%). Potential barriers to enquiring about alcohol included perceptions that patients are not always honest about alcohol intake (84%) and communication difficulties (44%). I usually ask about alcohol' was ranked by 36% as the number one presentation likely to prompt alcohol discussion. Altered liver function test results followed by suspected clinical depression were most frequently ranked in the top three presentations. Suspicious or frequent injuries, frequent requests for sickness certificates and long-term unemployment were ranked in the top three presentations by 20% or less. Confidence in managing alcohol issues independently predicted likelihood to 'routinely ask' about alcohol consumption. Lack of time emerged as the single most important barrier to routinely asking about alcohol. Lack of time was predicted by perceptions of competing health issues in patients, fear of eliciting negative responses and lower confidence in ability to manage alcohol-related issues. Conclusions: Improving GPs' confidence and ability to identify, assess and manage at-risk drinking through relevant education may facilitate greater uptake of alcohol-related enquiries in general practice settings. Routine establishment of brief alcohol assessments might improve confidence in managing alcohol issues, reduce the time burden in risk assessment, decrease potential stigma associated with raising alcohol issues and reduce the potential for negative responses from patients. Refereed/Peer-reviewed