Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults.

OBJECTIVE: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. METHODS: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. RESULTS: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. CONCLUSION: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. PATIENT OR PUBLIC CONTRIBUTION: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.

Balancing the risks and benefits of sun exposure: A revised position statement for Australian adults.

OBJECTIVE: To describe the development of a new position statement regarding balancing the risks and benefits of sun exposure for Australian adults. METHODS: We conducted a Sun Exposure Summit in March 2021, with presentations from invited experts and a workshop including representation from academic, clinical, policy, and patient stakeholder organisations. The group considered advice about balancing the risks and benefits of sun exposure for Australian adults and developed a revised consensus position statement. RESULTS: The balance of risks and benefits of sun exposure is not the same for everybody. For people at very high risk of skin cancer, the risks of exposure likely outweigh the benefits; sun protection is essential. Conversely, people with deeply pigmented skin are at low risk of skin cancer but at high risk of vitamin D deficiency; routine sun protection is not recommended. For those at intermediate risk of skin cancer, sun protection remains a priority, but individuals may obtain sufficient sun exposure to maintain adequate vitamin D status. CONCLUSIONS: The new position statement provides sun exposure advice that explicitly recognises the differing needs of Australia's diverse population. IMPLICATIONS FOR PUBLIC HEALTH: Mass communication campaigns should retain the focus on skin cancer prevention. The new position statement will support the delivery of personalised advice.

Navigating Community-Based Aged Care Services From the Consumer Perspective: A Scoping Review.

BACKGROUND AND OBJECTIVES: The shift to consumer-directed aged care means that older adults need to play a more active role in navigating the complex aged care system for adequate health and social services. Challenges in the navigation process result in unmet needs and difficulty accessing available resources. This scoping review investigates how aged care navigation is conceptualized in literature and interrogates research on the experiences of older adults navigating community-based aged care services with or without support from their informal carers. RESEARCH DESIGN AND METHODS: This review follows the Joanna Briggs Institute methodological guidelines. PubMed, Scopus, and ProQuest were searched for relevant literature published from 2008 to 2021, supplemented by grey literature and manual reference list searching. Data were extracted using a predefined data-extraction table and synthesized with an inductive thematic analysis. RESULTS: The current conceptualization of aged care navigation focuses on the support provided to older adults, rather than actions taken by older adults themselves. Thematic analysis from the included studies (n = 26) revealed shared themes (lack of knowledge, social networks as information providers, complex care systems) among older adults and informal carers; unique challenges faced by older adults (difficulties with technology, waiting game), and informal carers (structural burden) in aged care navigation. DISCUSSION AND IMPLICATIONS: Findings suggest the need to comprehensively assess individual circumstances including social networks and access to informal carers as predictors of successful navigation. Changes that reduce the complexity of the aged care system and improve coordination will relieve the structural burden experienced by consumers.

Estimating cancers attributable to physical inactivity in Australia.

OBJECTIVES: It was previously estimated that 1814 (1.6 % of incident cancers) were attributable to physical inactivity in Australia in 2010, when only three sites were considered. We estimated the burden of cancer due to physical inactivity in Australia for 13 sites. DESIGN: The population attributable fraction estimated site-specific cancer cases attributable to physical inactivity for 13 cancers. The potential impact fraction was used to estimate cancers that could have been prevented in 2015 if Australian adults had increased their physical activity by a modest amount in 2004-05. METHODS: We used 2004-05 national physical activity prevalence data, 2015 national cancer incidence data, and contemporary relative-risk estimates for physical inactivity and cancer. We assumed a 10-year latency period. RESULTS: An estimated 6361 of the cancers observed in 2015 were attributable to physical inactivity, representing 4.8 % of all cancers diagnosed. If Australian adults had increased their physical activity by one category in 2004-05, 2564 cases (1.9 % of all cancers) could have been prevented in 2015. CONCLUSIONS: More than three times as many cancers are attributable to physical inactivity than previously reported. Physical activity promotion should be a central component of cancer prevention programmes in Australia.

Attitudes and Perceptions on Advance Care Planning Among Chinese-Speaking Older Australians.

BACKGROUND: Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required. OBJECTIVE: This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians. METHODS: A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically. RESULTS: Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs. CONCLUSION: Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community.

Advance Care Planning in Australia: Progress in research and implementation.

Advance Care Planning in Australia has its foundations in the Respecting Patient Choices model, which was initially implemented in one state. The Australian population is diverse, ageing and geographically dispersed, with health and aged care services provided by a range of different organisations and regulated at different levels. Key challenges in ACP implementation include discomfort with ACP discussion, inconsistent legislation and ACP documentation across jurisdictions, poor quality control of ACP documents and difficulties accessing ACP documents at the point of care. The COVID-19 pandemic exposed a range of issues but also led to some innovative practices which have continued after the relaxation of public health restrictions. Ongoing implementation work focuses on meeting the needs of diverse communities and sectors in ACP, while seeking an overall coherence in policy and standardisation of practice through high-level best-practice principles, quality standards and policy frameworks.

Advance planning for research participation: Time to translate this innovation into practice.

OBJECTIVES: Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health-related research, policy-making, advocacy and service delivery in health and aged care. METHODS: An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. RESULTS: Raising awareness of advance research planning requires multi-faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person-centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. CONCLUSIONS: As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area.

The impact of mild cognitive impairment on decision-making under explicit risk conditions: Evidence from the Personality and Total Health (PATH) Through Life longitudinal study.

OBJECTIVE: Previous research has indicated that cognition and executive function are associated with decision-making, however the impact of mild cognitive impairment (MCI) on decision-making under explicit risk conditions is unclear. This cross-sectional study examined the impact of MCI, and MCI subtypes, on decision-making on the Game of Dice Task (GDT), among a cohort of older adults. METHOD: Data from 245 older adult participants (aged 72-78 years) from the fourth assessment of the Personality and Total Health Through Life study were analyzed. A diagnostic algorithm identified 103 participants with MCI, with subtypes of single-domain amnestic MCI (aMCI-single; n = 38), multi-domain amnestic MCI (aMCI-multi; n = 31), and non-amnestic MCI (n = 33), who were compared with an age-, sex-, education-, and income-matched sample of 142 cognitively unimpaired older adults. Decision-making scores on the GDT (net score, single number choices, and strategy changes) were compared between groups using nonparametric tests. RESULTS: Participants with MCI showed impaired performance on the GDT, with higher frequencies of single number choices and strategy changes. Analyses comparing MCI subtypes indicated that the aMCI-multi subtype showed increased frequency of single number choices compared to cognitively unimpaired participants. Across the sample of participants, decision-making scores were associated with measures of executive function (cognitive flexibility and set shifting). CONCLUSION: MCI is associated with impaired decision-making performance under explicit risk conditions. Participants with impairments in multiple domains of cognition showed the clearest impairments. The GDT may have utility in discriminating between MCI subtypes.

Forty years of Slip! Slop! Slap! A call to action on skin cancer prevention for Australia.

This year, 2021, marks the 40th anniversary of the iconic Slip! Slop! Slap! campaign which launched Australia's status as a global leader in skin cancer prevention. Since the campaign first aired in the summer of 1980-81, notable successes have been achieved, with melanoma rates declining in younger age groups. While skin cancer prevention is rightly considered a triumph of Australian public health, challenges remain. Australia still has one of the highest rates of skin cancer in the world, with about 2000 deaths per year from the disease. Skin cancer also presents the highest cost burden to the health system of any cancer type. Despite this, government investment at the national level is lacking. It is more difficult than ever to collect valuable representative national data on population skin cancer prevention behaviours to underpin and evaluate programs, as the methodology used previously has become unfeasible. There has not been a national skin cancer prevention mass-media campaign for over a decade, indicating complacency from policy makers. State and territory governments could also do more to implement evidence-based policies aimed at protecting children from ultraviolet radiation. This paper sets out Australia's skin cancer prevention landscape in 2021, and makes the case for a renewed focus from government on sun protection to safeguard the significant gains made over four decades and to protect future generations from an almost entirely preventable cancer.

Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

BACKGROUND AND OBJECTIVES: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

Optimizing Texting Interventions for Melanoma Prevention and Early Detection: A Latin Square Crossover RCT.

INTRODUCTION: Text messaging is an effective way to reach large populations with health promotion support. This study aims to establish the optimal text messaging intervention to achieve behavior change in young adults at risk of skin cancer. STUDY DESIGN: Latin square crossover RCT. SETTING/PARTICIPANTS: Participants were women and men aged 18-40 years living in Queensland, Australia who owned a smartphone and had ≥2 skin cancer risk factors. INTERVENTION: Participants were enrolled from December 2018 to February 2019 and completed an eligibility survey. Eligible participants were randomized to 4 different text message interventions using a Latin square design with varying personalization, interactivity, and message frequency (February 2019‒July 2019). Each intervention lasted for 1 month; between interventions, participants had a 1-week washout period in which they completed an online questionnaire. Participants completed a 6-month follow-up online survey in January 2020. MAIN OUTCOME MEASURES: Measures included self-reported sun protection habits and sunburns. RESULTS: A total of 277 (71.2% response rate) participants completed the 6-month follow-up. The sun protection habits index was significantly higher in all the 4 text messaging interventions (p<0.01 for each intervention) than at baseline, with similar sun protection habits improvements among all interventions (p=0.27). Sunburn rates decreased significantly over time (p<0.01 each intervention), with all the 4 interventions achieving reductions in sunburn rates during the intervention periods (p=0.78). Overall, the sunburn rates decreased from 40.3% at baseline to 7.0% at the end of the intervention, and at 6-month follow-up, it remained significantly below baseline levels at 23.5% (p<0.01). CONCLUSIONS: Regular text messaging interventions result in significantly increased sun protection and decreased sunburn in young adults. TRIAL REGISTRATION: This study is registered at the Australian and New Zealand Clinical Trials Registry ACTRN12618001299291.

Organisational and advance care planning program characteristics associated with advance care directive completion: a prospective multicentre cross-sectional audit among health and residential aged care services caring for older Australians.

BACKGROUND: Advance care planning (ACP) and advance care directive (ACD) completion improve outcomes for patients, family, clinicians and the healthcare system. However, uptake remains low. Despite increasing literature regarding organisational-level ACP characteristics leading to success, there is a lack of data measuring the impact of these factors on ACD prevalence. METHODS: A prospective multi-centre, cross-sectional audit of health records among older Australians accessing general practices (GP), hospitals and residential aged care facilities (RACF) was undertaken to describe organisational and ACP-program characteristics across services, document ACD prevalence, and assess organisation-level predictors of ACD prevalence. Organisational-level data included general and ACP-program characteristics. Patient/resident data included demographics and presence of ACDs. RESULTS: One hundred organisations (GP = 15, hospitals = 27, RACFs = 58) participated, contributing data from 4187 patient/resident health records. Median prevalence of ACDs across organisations was 19.4%, (range = 0-100%). In adjusted models, organisational sector type was the strongest predictor of ACD prevalence, with higher rates in RACFs (unadjusted 28.7%, adjusted 20.6%) than hospitals (unadjusted 6.4%, adjusted 5.8%) or GPs (unadjusted 2.5%, adjusted 6.6%). RACFs in regional and rural/remote areas had higher prevalence than metropolitan organisations. Organisations supported by government funding and those that were Not For Profit had higher prevalence than those that were privately funded, and organisations with an ACP program that had been implemented at least 3 years before data collection had higher prevalence than those with either no program or a more recent program. CONCLUSIONS: The median ACD prevalence was low, with substantial variation across organisations. Sector type was the strongest predictor, being highest in RACFs. Low prevalence rates, overall and in particular sectors, have implications for improvements. Further research into organisational factors associated with ACP/ACD completion is required.

Advance care directive prevalence among older Australians and associations with person-level predictors and quality indicators.

BACKGROUND: Advance care planning (ACP) conversations may result in preferences for medical care being documented. OBJECTIVE: To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person-level predictors and ACD quality indicators. DESIGN AND SETTING: National multi-centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). PARTICIPANTS: A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). MAIN OUTCOME MEASURES: ACP documentation prevalence by setting and type including person-completed ACDs and non-ACD documents (completed by a health professional or someone else); person-level predictors and quality indicators of ACDs. RESULTS: Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. CONCLUSIONS AND CONTRIBUTION: Low ACP documentation prevalence and a lack of accessible, person-completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

The role of cognition and reinforcement sensitivity in older adult decision-making under explicit risk conditions.

Introduction: Previous research has suggested that individual differences in executive functions, memory and reinforcement sensitivity are associated with performance on behavioral decision-making tasks. Decision-making performance may also decline with age, however there is a lack of research on the interplay of cognitive and affective processes, and their impact on older adult decision-making. This study examined associations between executive functions, memory and reinforcement sensitivity on the Game of Dice Task (a measure of decision-making under explicit risk) among older adults.Method: One thousand and two older adults without cognitive impairment (aged 72-78 years) participated as part of an Australian longitudinal cohort study (the Personality and Total Health Through Life study). Decision-making sub-types were identified through cluster analysis and multinomial logistic regression was used to assess associations with measures of cognition and reinforcement sensitivity.Results: Cluster analysis identified three decision-making sub-types, which we label "advantageous," "disadvantageous" and "switching." Multivariate analyses found that relative to the mid-performing "switching" sub-type, advantageous decision-makers were more likely to be younger, male and have higher scores on a test of verbal learning. Disadvantageous decision-makers were more likely to have poorer scores on some components of executive function (set shifting, but not working memory or inhibitory control), although this effect was partly attenuated by a measure of reinforcement sensitivity (reward responsiveness).Conclusion: These results indicate that specific components of learning and executive functions are influential in decision-making under explicit risk among a sample of older adults.

Supported Decision-Making for People Living with Dementia: An Examination of Four Australian Guardianship Laws.

Australia is obliged under the Convention on the Rights of Persons with Disabilities to provide decision-making support to people with cognitive impairment. While there has been considerable recent activity looking at how the law should respond to the challenges raised by the Convention, there has been little discussion in Australia of how these changes will impact upon the care of people with dementia (the largest class of person with cognitive impairment in Australia). This section examines current Australian legal approaches to decision-making for people with dementia in four jurisdictions (New South Wales, South Australia, Victoria and Western Australia) through an analysis of reported tribunal decisions in each of these jurisdictions. It notes the scope for informal supported decision-making and the basis for the invocation of guardianship orders, including the new Victorian supportive guardianship order, and compares the new standards raised by the Convention. The section considers legal reforms which could improve the implementation of supported decision-making for people living with dementia.