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Additional file 1.

Additional file 2: Table S2. Classification of patient-reported outcomes included in cancer-related core outcome sets.

Purpose: Cancer survivors often make long-term dietary changes, and nutrition is important for survivorship outcomes. Many survivors experience persisting cognitive difficulties, which can impact health behaviors. This study aimed to identify perceived drivers of eating habit changes, and the barriers to making intentional dietary changes, among breast cancer survivors with persisting self-reported cancer-related cognitive impairment. Materials and Methods: A qualitative framework explored survivors' perceptions of dietary habit changes. Thirteen Australian breast cancer survivors (M.time since diagnosis: 23.6 months, standard deviation [SD] 15.3; M.time since completing primary treatment: 14.7 months, SD 15.3) completed semistructured interviews. Questions related to dietary changes since diagnosis and treatment. Major themes were identified from interview transcripts using thematic analysis. Results: While most individuals perceived their diet to be broadly similar to prediagnosis, several changes to diet and eating habits were identified, which were often meaningful to these survivors. Themes relating to survivors' eating habit changes included the following: (1) meal timing and frequency shifts, (2) more plant-based eating, and (3) less variety and more convenience. Changes in eating habits were attributed to the following: (1) persisting treatment-related changes, (2) help and support from others, (3) old treatment habits, (4) preventative health and self-care, and (5) changes to work schedule. Barriers to making intentional dietary changes included the following: (1) too much time and effort, (2) food cravings and enjoyment, and (3) lacking dietary ideas and resources. Conclusions: Many survivors reported long-term changes in dietary habits, some of which align with current recommendations. Causes of dietary habit changes, and barriers to engaging in healthier dietary habits, involved multiple biopsychosocial elements. Additional resources or strategies that assist navigating survivorship challenges and their effects on dietary habits are needed. Future studies should explore whether post-treatment nutritional review with a qualified dietary health professional is helpful for survivors who experience longterm cancer-related cognitive impairment. Refereed/Peer-reviewed

Objectives Issues arising from a lack of outcome standardisation in health research may be addressed by the use of core outcome sets (COS), which represent agreed-upon recommendations regarding what outcomes should be measured as a minimum in studies of a health condition. This review investigated the scope, outcomes, and development methods of consensus-based COS for cancer, and their approaches and criteria for selecting instruments to assess core patient-reported outcomes (PROs). Methods Studies that used a consensus-driven approach to develop a COS containing PROs, for use in research with cancer populations, were sought via MEDLINE, CINAHL, Embase, Cochrane Library, and grey literature. Results Seventeen studies met the inclusion criteria. Most COS (82%) were specific to a cancer type (prostate, esophageal, head and neck, pancreatic, breast, ovarian, lung, or colorectal) and not specific to an intervention or treatment (76%). Conducting a systematic review was the most common approach to identifying outcomes (88%) and administering a Delphi survey was the most common approach to prioritising outcomes (71%). The included COS contained 90 PROs, of which the most common were physical function, sexual (dys) function, pain, fatigue, and emotional function. Most studies (59%) did not address how to assess the core PROs included in a set, while 7 studies (41%) recommended specific instruments. Their approaches to instrument appraisal and selection varied. Conclusion Efforts to standardise outcome assessment via the development of COS may be undermined by a lack of recommendations on how to measure core PROs. To optimise COS usefulness and adoption, valid and reliable instruments for the assessment of core PROs should be recommended with the aid of resources designed to facilitate this process.

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.

Refereed/Peer-reviewed Post-traumatic stress disorder (PTSD) is a pervasive disorder among both current and ex-serving Australian Defence Force (ADF) members. Studies have shown current psychological and pharmacological treatments for PTSD are suboptimal in veterans, with high dropout rates and poor adherence to treatment protocols. Therefore, evaluating complementary interventions, such as assistance dogs, is needed for veterans who may not receive the ultimate benefit from traditional therapies. The present longitudinal mixed-method study examined the effectiveness of Operation K9 assistance dogs among sixteen veterans with PTSD, specifically, their effects on suicidality, PTSD, depression, and anxiety from baseline to 12 months post-matching. Self-reported measures were completed prior to receiving their dog (baseline) and at three time points (3, 6, and 12 months) following matching. The Clinician-Administered PTSD Scale for DSM-5 was used to assess the severity of every PTSD case. Veterans participated in a semi-structured interview 3 months post-matching. Whilst there was a reduction in the proportion of veterans reporting any suicidality, there was no significant change in the probability of veterans reporting suicidality between time points. There was a significant effect of time on PTSD, depression, and anxiety symptoms. Three major themes emerged from qualitative data analysis: life changer, constant companion, and social engagement. Qualitative data suggest assistance dogs can have a positive impact on important areas of daily life and support veterans in achieving some of the prerequisites for health, including access to services, transport, education, employment, and development of new and diverse social and community connections. Connections were key in improving health and wellbeing. This study exemplifies the power of human–animal relationships and adds emphasis to the need to take these seriously and create supportive healthy environments for veterans with PTSD. Our findings could be used to inform public health policy and service delivery, in line with the Ottawa Charter action areas and indicate that for veterans with PTSD, assistance dogs may be a feasible adjunct intervention.

Survivors of cancer frequently experience persistent and troublesome cognitive changes. Little is known about the role diet and nutrition plays in survivors’ cognition. We explored the feasibility of collecting cross-sectional online data from Australian survivors of breast and colorectal cancer to enable preliminary investigations of the relationships between cognition with fruit and vegetable intake, and the Omega-3 Index (a biomarker of long chain omega 3 fatty acid intake). A total of 76 participants completed online (and postal Omega-3 Index biomarker) data collection (62 breast and 14 colorectal cancer survivors): mean age 57.5 (±10.2) years, mean time since diagnosis 32.6 (±15.6) months. Almost all of the feasibility outcomes were met; however, technical difficulties were reported for online cognitive testing. In hierarchical linear regression models, none of the dietary variables of interest were significant predictors of self-reported or objective cognition. Age, BMI, and length of treatment predicted some of the cognitive outcomes. We demonstrated a viable online/postal data collection method, with participants reporting positive levels of engagement and satisfaction. Fruit, vegetable, and omega-3 intake were not significant predictors of cognition in this sample, however the role of BMI in survivors′ cognitive functioning should be further investigated. Future research could adapt this protocol to longitudinally monitor diet and cognition to assess the impact of diet on subsequent cognitive function, and whether cognitive changes impact dietary habits in survivors of cancer. Refereed/Peer-reviewed

Refereed/Peer-reviewed

Background There are well established modifiable risk factors for late-life dementia. These risk factors account for over 30% of population attributable dementia risk and accrue over the lifespan. Young adults have the greatest potential to reduce their own risk for dementia. This study aimed to investigate what young Australian adults know about dementia and its risk factors, and further, how they estimated these risks. Methods An online survey promoted through various social media platforms was completed by 604 young Australian adults aged 18–44 years of age. Results Seventy percent of participants had a limited understanding of dementia (identifying cognitive or functional impairment), 25% had a good understanding, with 5% having no understanding. Twenty percent of respondents thought there were no modifiable risk factors for dementia. Less the half of participants agreed with two of the nine established dementia risk factors (hearing loss in midlife and education in early life), with over half of participants agreeing to the remaining seven risk factors. Females consistently judged the risks conferred by the nine established dementia risk factors to be higher than males. Those who were lonely judged the dementia risk conferred by loneliness to be higher than those who were not lonely; and smokers judged the dementia risk conferred by smoking to be less than non-smokers. Conclusion Young adults have the greatest potential to change their dementia risk, and these findings show that there are important gaps in knowledge of dementia and its risk factors in this group.

Enhanced cognitive behaviour therapy (CBT-E) has recently generated interest as a potentially useful treatment for eating disorders (ED). In the current study, we conducted a systematic review of the outcome literature on CBT-E, with both narrative and meta-analytic synthesis. We included single-group uncontrolled pre-post design studies and randomised control trials (RCTs) of CBT-E, which allowed us to include a larger number of studies, and also compare the two methodologies in terms of effect size. The primary analysis included 15 CBT-E studies with a total of 948 participants. Narrative synthesis examined bingeing and purging episodes, BMI change, and follow-up results. A large, statistically significant effect supported CBT-E as a treatment for all EDs (g = 1.06). When comparing methodologies, both pre-post design studies (g = 1.15) and RCTs (g = 0.97) yielded large effects. Narrative synthesis outlined reductions in ED behaviours and increases in BMI which were maintained at follow-up. Limitations include that further RCTs of CBT-E are needed to establish clinical effectiveness of this treatment approach for all EDs; however, results from narrative exploration indicate this endeavour would be worthwhile. Despite the limitations, this study provides additional support for CBT-E as a successful treatment across the range of EDs. Refereed/Peer-reviewed

Melanoma is the most common cancer among young Australians. Despite school-based programs such as ‘Sun Smart’ leading to increased knowledge among children of the harmful effects of sun exposure, many young adults continue to desire a darker skin tone because of a general perception among their peers that tanned skin is attractive. This ‘tanned-ideal’ may be challenged through exposure to material posted on social media. This study aimed to investigate the impact of two online interventions on knowledge of skin cancer and intentions to engage in sun tanning and protective behaviours, as assessed by survey. In addition, the likelihood that the intervention would be ‘shared’ on social media was explored by interview during an intervention session. Eighteen women aged 18–24 years participated in this pilot, mixed-methods intervention study. Participants completed surveys 2 weeks before and 2 weeks after attending an intervention session in which they viewed a video and completed a face-aging activity, with the order of completion balanced within the sample. Two weeks after the intervention, there was a significant increase in knowledge and intended sun protection behaviours and a significant decrease in intended future tanning hours. There was no effect of intervention order. Interview data indicated that younger participants would share the ageing application with peers because it was fun; older participants reported that they would share the video because it was educational. Factors that encourage sharing on social media include being realistic, instructive or personally meaningful, and short in duration.

Objective: To collaboratively develop a model of nurse-led care, within a multidisciplinary team and support continuity of care at the primary-secondary interface for people with multimorbidity. Background: Existing models of care are frequently based on a medical model, designed to manage a single disease condition, and thus pose a significant challenge to provide healthcare for people with multimorbidity. Particular design elements for models of care affecting the primary-secondary interface have been previously demonstrated, however, these have not been applied to the development of a nurse-led model of care for people with multimorbidity. Study design and methods: This paper, the first in a series of two, is part of a broader action research study and reports on the development of a model which will subsequently be assessed in terms of feasibility to provide a nurse-led care coordination service for people with multi-morbidity. This paper reports on the first action research cycle and methodology including a literature search, stakeholder engagement forums, validation workshop, team meetings, and professional engagement and validation. Results: Data from two stakeholder forums were sorted into 257 ‘structure, process and outcome’ statements and 86 goal related statements. These were cross referenced with design elements on models of care from the literature and finally aggregated into themes. The aggregated themes were then integrated into a model of care for a nurse–led care coordination service. The model consists of an overarching component, 4 domains and 6 operational areas with underpinning criteria. Conclusion: Through stakeholder consultation, consideration of the strengths of previous models and building blocks, a new nurse-led model of care that provides a pathway for transitional healthcare management at the primary -secondary interface has been developed. Inclusion of governance and culture within the model’s domains enables the approach to be pragmatic and adaptable, contributing to the potential for successful change management and model implementation in the clinical workplace. Further evaluation and refinement of the model is planned and will be reported on, in part 2 of this two-part series. Implications for research, policy, and practice: These findings provide direction for model implementation and further research required regarding nurse-led models of care. The supporting documents, systems, and processes reported, positions the model to support change and guide clinical practitioners and nursing management working at the primary-secondary healthcare interface. The future success of model implementation could provide evidence for health workforce policy and coordinated healthcare management. What is already known about this topic: Particular design elements for models of care affecting the primary-secondary interface have been previously demonstrated. Interventions delivered at the primary-secondary care interface, particularly stepped care and models of shared care are effective for the management of depression. Established model design elements and interventions to improve continuity of care at the primary-secondary interface have not been applied to nurse- led models of care for chronic conditions and still require development within research settings. What this paper adds: A new person-centred nurse-led model of care coordination, with healthcare management activities intended to support and enable development of the person’s agency in their healthcare optimisation. A model with specific domains and criteria with the potential for application to nurse-led services across primary and secondary settings, for a range of patients. Inclusion of governance and culture as domains within the model, to enable the best possibility for change, model implementation and continuity of care between the primary-secondary healthcare interface.

Media literacy interventions provide education about the way media influence attitudes to tanned skin and promote risky health-related behaviors (e.g., sun exposure). This study tested whether higher levels of media literacy can protect against the internalization of a tanned ideal and participation in appearance comparisons online. A total of 151 young Australians aged 18 to 29 years (61 males, 90 females) completed a measure of media literacy before being randomly assigned to view photos of models with either tanned (n = 77) or pale skin (n = 74) on social media. Participants completed measures of internalization of a tanned ideal and tendency to make appearance comparisons following exposure to the photos.There were significant negative relationships between level of media literacy skills and both internalization of a tanned ideal and appearance comparisons. Moreover, exposure to tanned models resulted in a higher tendency to make appearance comparisons than exposure to pale models. Results indicate that media literacy skills protect against skin cancer risk factors associated with media exposure. Future interventions to reduce skin cancer risk should address the role of social networking sites in proclaiming tanned skin as ideal and increase skepticism about photos of tanned models online. Refereed/Peer-reviewed

This research aims to identify the factors that influence caregivers’ decisions about the aged care providers they select for their elder relatives when caring from a distance and what they value once they have engaged a service. Adult long-distance carers for older relatives living within Australia were purposively sampled and they participated in audio-recorded interviews. A thematic analysis was employed to investigate the data. A sample of 13 participants enabled data saturation with no new major themes identified in the final three interviews. Participants were 50 to 65 years (Mean = 59.8) and mostly (77%) female. Four themes emerged relating to selection of care providers: (1) availability of care, (2) financial arrangements, (3) proximity and location, and (4) reputation of care provider. Five themes detailed valued qualities of care: (1) vigilant monitoring and responsivity, (2) communication with family, (3) flexibility and proactiveness of care, (4) staffing, and (5) access to appropriate and holistic care to maintain wellbeing. Long-distance caregivers face barriers in selecting and managing aged care services from afar within a complex Australian aged care system. They strongly value regular, proactive communication about the wellbeing of their relatives and may be particular beneficiaries of communication and assistive monitoring technologies Refereed/Peer-reviewed

Objective: Decreasing intentional tanning behaviour is a critical area of skin cancer prevention. Research evidence that tanning behaviour is significantly influenced by appearance motivations exists. The Tripartite Influence Model posits that internalisation of ideals about body image mediates the relationship between sociocultural norms and appearance-related behaviour and has been demonstrated primarily in the domain of weight. This study aimed to assess whether ideal skin tone (internalisation of a tanned ideal) mediated the endorsement of sociocultural norms about attractiveness of tanned skin and 12-month tanning behaviour. Method: Young adult participants (N = 514) from the university (removed for blind review) were surveyed regarding their ideal skin tone and sociocultural norm endorsement. Results: At 12-month follow-up, 246 participants reported their tanning behaviour over the previous year. Results indicated that the internalisation of a tanned ideal mediated the relationship between sociocultural norms and tanning behaviour for females but not males. Young adult males also desired a tanned appearance, and peer sociocultural perceptions were associated with male tanning behaviour. Conclusions: This research lends support to the proposition that the Tripartite Influence Model has explanatory power for tanning behaviour. We recommend that future research involving young adults incorporate skin tone and tanning as a component of body image alongside body shape and eating behaviours. Refereed/Peer-reviewed

Purpose of review: To review recent research on cancer-related cognitive impairment (CRCI) in children, including correlational studies and interventions in which outcomes have included cognitive test performance, neuroimaging or academic performance. Recent findings: Impairments in processing speed, working memory, executive function and attention continue to be demonstrated in survivors of childhood cancers. Children receiving radiation treatment for their cancer demonstrate greater impairment than those who undergo surgery and/or chemotherapy without radiation. However, CRCI still occurs in the absence of radiation treatment, particularly in the domain of attention. Recent neuroimaging studies highlight atypical connectivity of white matter and its associations with cognitive performance. Given impairments in cognitive function and associated neuroanatomical factors, it is not surprising that survivors of childhood cancers experience academic difficulties. However, early intervention may provide one means of improving cognitive and academic outcomes. Summary: Children with cancer are at risk of impairment in the domains of processing speed, attention, working memory and executive function. Those who receive radiation are likely to experience greater CRCI than those who do not receive this treatment. All survivors of childhood cancers should be carefully monitored to provide support and implement evidence-based interventions to ameliorate cognitive late effects. Refereed/Peer-reviewed

Purpose: To perform a systematic review identifying how dietary factors are related to cognitive function in cancer survivors who are not currently undergoing primary treatment.Methods Using the PRISMA framework, a search was conducted for studies published before February 2019 across multiple databases, identifying 2304 unique articles. Twelve met final inclusion criteria and were evaluated through narrative synthesis.This review was registered with the International Prospective Register Of Systematic Reviews (CRD42018111941). Results: Included studies were heterogeneous in methodology and in dietary and cognitive variables investigated making direct comparisons difficult. Evidence of a relationship between diet and cognition was mixed; the most consistent evidence was identified in relation to a positive relationship between fruit and vegetable intake and cognitive function (both self-reported and objectively tested) in five out of six studies, but was not concordant across all studies. Conclusion: Preliminary evidence exists that a greater fruit and vegetable intake is associated with better cognitive functioning in cancer survivors, as has been reported in healthy populations; however, these data are correlational and include relatively small samples. Most evidence related to breast cancer survivors, with individual studies extending to colorectal and stomach cancer survivors. Experimental trials are needed to identify causal attribution of dietary factors on cognitive function in cancer survivors.Implications for cancer survivors At this time, there is not sufficient evidence to make dietary or nutritional recommendations specifically for improving cognitive function in cancer survivors. This should be considered in light of the general paucity ofresearch on this subject, necessitating further investigations Refereed/Peer-reviewed

Introduction Improving diet is a prime target for the prevention and management of chronic disease. The communal coping model suggests that families can mitigate shared risk of chronic disease through encouragement of healthful eating, eliciting preventive behaviors. Method Using network data from 69 Australian families across three ancestry groups (Anglo, Italian, and Asian) with varied family health histories, the present study applied social network analysis to identify patterns of intergenerational encouragement of healthful eating behavior within families, and assess whether patterns varied by family ancestry or disease density. Results Findings indicated variation in patterns of health encouragement by ancestry such that Asian-Australian families were most distinct from the other ancestry groups. While there was no main effect of familial disease history, it moderated the effect of Italian ancestry on intergenerational encouragement patterns. Discussion These results provide important context for future family based interventions that leverage normative patterns of intergenerational exchange of encouragement or aim to modify such patterns in an effort to improve family health. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Objective: Despite the multitude of research surrounding anorexia nervosa (AN) and perfectionism, there is yet to be a thorough investigation comparing perfectionism in those diagnosed with AN and other eating disorders, and other psychiatric diagnoses. The current meta-analysis aimed to explore these comparisons. Method: Following the Preferred Reporting Items or Systematic Reviews Meta Analyses (PRISMA) guidelines, we identified empirical studies that compared maladaptive and/or adaptive perfectionism scores in those diagnosed with AN and either a non-clinical comparison group, people diagnosed with a non-AN ED, or people diagnosed with another psychological disorder (i.e., other DSM diagnoses). In total, we identified 23 studies, comprising 3,561 participants who were all female. Comparison groups extracted from the studies were a non-clinical group, bulimia nervosa (BN) diagnosis group, and another psychological diagnostic group. Results: When AN maladaptive perfectionism levels were compared against the comparison groups, the results showed that those diagnosed with AN were more perfectionistic compared to the non-clinical group (g = 1.00), and the other psychiatric diagnosis group (g = 0.41). People diagnosed with AN also had higher levels of adaptive perfectionism levels compared to the non-clinical group (g = 1.24). Comparisons between those diagnosed with AN and BN were statistically non-significant for maladaptive perfectionism. Discussion: Although publication bias potentially affected the psychological diagnosis group comparisons, findings suggest that maladaptive perfectionism is a factor associated with both AN and BN. Refereed/Peer-reviewed