Co-occurring psychological distress and alcohol or other drug use among Indigenous Australians: Data from the National Aboriginal and Torres Strait Islander Health Survey.

OBJECTIVES: To determine the prevalence and demographic, social and health characteristics associated with co-occurring psychological distress symptoms, risky alcohol and/or substance use among a national sample of Aboriginal and Torres Strait Islander people aged 15 years or older. METHODS: This study uses secondary cross-sectional data from the 2018-19 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS). Data were collected via face-to-face interviews with those living in private dwellings across Australia. Participants were Aboriginal and Torres Strait Islander people (n = 10,579) aged 15 years or older. Data pertaining to psychological distress, alcohol and substance use were obtained and weighted to represent the total population of Aboriginal and Torres Strait Islander people in Australia. RESULTS: A total of 20.3% participants were found to have co-occurring psychological distress, risky alcohol use and/or substance use, and 4.0% reported co-occurrence of all three conditions. Female participants in a registered marriage and fully engaged in study or employment had lower rates of co-occurring conditions. Poorer self-rated health, one or more chronic conditions and increased experiences of unfair treatment and physical harm in the past 12 months were associated with increased rates of co-occurring conditions. CONCLUSION: A range of potential risk and protective factors were identified for co-occurring psychological distress, risky alcohol and/or substance use among Aboriginal and Torres Strait Islander people. This information is critical for planning effective holistic strategies to decrease the burden of suffering imposed upon the individual, family and community members impacted by co-occurring conditions.

The wellbeing needs of social housing tenants in Australia: an exploratory study.

BACKGROUND: Social housing provides homes for some of the most vulnerable in society. Those in social housing often have complex issues that may require support. Limited research has examined the unmet needs of those living in social housing from the tenant perspective. This exploratory study aimed to embark on filling this gap. METHODS: A cross-sectional study survey of adult social housing tenants in New South Wales, Australia. Consenting tenants completed a survey asking about their support needs across five domains: transport, employment and financial stress; housing and safety; health and health behaviour; access to services; and control over one's life. Negative binomial regression analysis was used to examine associations between the mean number of support needs and characteristics. RESULTS: Of the 104 tenants invited, 101 agreed to participate (97%) of which 100 completed the survey. Paying unexpected bills' (43%), feeling sad or anxious (40%), feelings of anger or frustration (34%), and memory or concentration problems (33%) were the most prevalent reported needs. Other needs included antisocial behaviour from neighbours (31%) and having control in the direction your life is taking (27%). Seventy-five percent of tenants reported at least one need, with an average of seven needs across the sample (median 5.5, range 0-24). Tenants who identified as Aboriginal or Torres Strait Islander had a higher number of needs compared to other tenants (RR 1.87 95% CI 1.08 to 3.35). CONCLUSIONS: More research describing tenant wellbeing needs is required to guide initiatives improving tenant wellbeing. Development of a standardised tool to measure and prioritise tenant wellbeing needs would be beneficial. There is a need for well-controlled research to establish the potential effectiveness and cost effectiveness of initiatives implemented at the policy or housing provider level. Future research must consider the multifaceted needs of this population. Further, Aboriginal and Torres Strait Islander people are generally overrepresented in social housing in Australia, and in this study Aboriginal and Torres Strait Islander tenants reported a higher number of needs compared to non-Aboriginal and Torres Strait Islander tenants. Given this, future research should ensure measurement tools or strategy initiatives are culturally sensitive and appropriate, and are developed in collaboration with Aboriginal and Torres Strait Islander communities.

A patient-centred approach to determine optimal supportive care across the cancer trajectory: a cross-sectional study.

OBJECTIVE: Supportive care is recognised as an integral component of cancer care. To comprehensively improve supportive care and to inform policy, it is essential to examine consumer's views of health services. This study aimed to develop and test a patient-centred approach by measuring consumer perspectives on the importance of aspects of supportive care to determine what patients consider highest quality or 'optimal' care. METHODS: A cross-sectional survey was conducted in oncology outpatient clinics. Eligible patients were invited to complete the optimal care survey on an iPad. The survey consisted of 69 items assessing 14 care domains across five phases of the care trajectory. RESULTS: A total of 359 participants completed the survey. Items in the 'preparation for treatment' and 'follow-up and end-of-life care' phases were endorsed as very important/essential to optimal care by most participants (79-97% and 80-100%, respectively). Items in the 'preparation for first appointment' (48-84%), 'first appointment' (51-97%) and 'receiving treatment' (32-93%) phases showed greater variation in endorsement. CONCLUSION: This study provides a patient-centred tool for quantifying optimal supportive care for people with cancer across the treatment trajectory. This tool could be used by healthcare providers to evaluate existing care quality, develop policies and guide clinical service improvements.

Gaps in patient-centered follow-up cancer care: a cross sectional study.

Objective There are published guidelines on the care that should be provided to cancer patients upon finishing treatment (i.e. follow-up care). Gaps in care may arise where patients' reported experiences of care do not align with guideline recommendations. The aim of this study was to explore whether oncology patients report gaps in patient-centered follow-up care. Methods This study was a cross-sectional survey of adult cancer patients receiving follow-up care within four outpatient oncology clinics. Patients were approached in clinic waiting rooms and asked to complete an electronic survey. The survey examined patients' self-report of receiving six aspects of follow-up care. Results A total of 239 participants completed the survey (study consent rate = 83%). Only 49% of participants received all six items of care. Patients reported high rates of being told who to contact if they have any questions or concerns (95%); who to contact if signs or symptoms occur (91%); and what to expect in their follow-up care (90%). A lower proportion of patients indicated they were informed about the role of their GP after treatment has finished (79%); what symptoms or signs might suggest the cancer had returned (74%); or were given a written care plan (71%). Conclusions: The study highlights that there is a gap between some aspects of optimal patient-centered care, and the actual care received by patients. Health care providers and researchers should consider how to improve follow-up care experiences to ensure best practice cancer care delivery during this important stage in cancer survivorship.

Oncology nurses' perceptions of advance directives for patients with cancer.

This study examined oncology nurses' perceptions of the impact of advance directives on oncology patients' end-of-life care. Nurses (n = 104), who were members of an oncology nursing society or worked in a large metropolitan cancer center, completed a cross-sectional survey assessing perceptions of advance directives. There was high agreement that advance directives (i) make decisions easier for family (87%) and providers (82%); (ii) are doctors' responsibility to implement (80%); (iii) reduce unwanted aggressive treatment in the last weeks of life (80%); (iv) protect patient autonomy (77%); and (v) increase the likelihood of dying in a preferred location (76%). There was moderate or low agreement that advance directives (i) are accessible when needed (60%); (ii) are oncology nurses' responsibility to implement (46%); (iii) are always followed (41%); (iv) reduce the likelihood of pain in the last weeks of life (31%); (v) contain difficult to follow statements (30%); and (vi) have no impact on comfort in the last weeks of life (15%). Most nurses perceive benefits for advance directives, however, there remains uncertainty around accessibility and implementation. Guidelines and education about advance directive processes in oncology could improve person-centered end-of-life care.

The System for Patient Assessment of Cancer Experiences (SPACE): a cross-sectional study examining feasibility and acceptability.

BACKGROUND: Continuous quality improvement in cancer care relies on the collection of accurate data on the quality of care provided. It is suggested that such an approach should: (i) measure the patient's care experience throughout the cancer trajectory; (ii) use items and response scales that measure concrete and specific aspects of care; (iii) minimise recall bias; (iv) minimise the burden placed on patients for providing data; (v) minimise administrative burden; and (vi) collect actionable data. The System for Patient Assessment of Cancer Experiences (SPACE) was developed to meet these objectives. This study describes the feasibility and acceptability of the SPACE in a sample of oncology outpatients. METHODS: The SPACE was examined in four medical oncology centres. Adult patients were approached by a research assistant prior to their scheduled consultation. Consenting participants completed the SPACE on a computer tablet. Items were tailored to the patient's cancer treatment phase. RESULTS: Of the eligible participants, 1143 consented (83%) and 1056 completed the survey (92%). The average time taken to complete the survey was 6 min 28 s. A large proportion of the sample indicated that the survey was acceptable (88-93% across three acceptability items). CONCLUSION: This study demonstrates that the SPACE can be feasibly administered each time a patient comes to the oncology unit and is acceptable to patients. The SPACE could be used to quantify the care experiences which patients receive during their cancer care. The resulting data could be used to set benchmarks and improve the performance of cancer clinics.

Prevalence and Predictors of Symptoms of Depression Among Individuals Seeking Treatment from Australian Drug and Alcohol Outpatient Clinics.

This study examined the prevalence of and sociodemographic characteristics associated with elevated symptoms of depression among clients seeking alcohol or other drug (AOD) treatment. Consenting clients attending two AOD outpatient clinics answered demographics, treatment questions and the Patient Health Questionnaire to assess depressive symptoms. Counts and percentages were calculated to determine the prevalence of elevated depressive symptoms. Logistic regression was used to model the odds of having elevated depressive symptoms for client demographics. Of the 203 clients who completed the survey (87% consent rate), 55% (n = 111) demonstrated elevated depressive symptoms. Females were twice as likely to experience elevated symptoms of depression compared to males (OR 2.07; 95% CI 1.05, 4.08; P = 0.037). The high rates of elevated depressive symptoms among individuals seeking AOD treatment highlight the importance of ongoing research to provide effective treatments for this comorbidity. Routine screening and clear treatment pathways may assist with providing high quality care.

Oncology patient preferences for depression care: A discrete choice experiment.

OBJECTIVE: Using a vignette-style DCE in a sample of oncology patients, this study explored: (1) the relative influence of the patient's level of concern about their depression on preferences for care, (2) the relative influence of depression severity according to a mental health checklist on preferred treatment-seeking options, and (3) whether patient age and gender were associated with depression care preference. METHODS: A discrete choice experiment (DCE) survey of cancer patients was conducted. Hypothetical vignettes to elicit care preferences were created using two attributes: the cancer patient's level of concern about depression (a little or a great deal) and results of a mental health checklist (not depressed or very depressed). Three response options for care preferences were presented, including a self-directed approach, shared care approach, and clinician-directed referral approach. Participants chose their most and least preferred options. RESULTS: A total of 281 cancer patients completed the survey. There was a significant association between level of concern and the most preferred option. Those with a great deal of concern about depression preferred to receive referral from their clinician more than those with a little concern about depression. Males were significantly more likely to select a self-directed approach as their most preferred option. CONCLUSIONS: An oncology patient's level of concern about depression may influence the type of care they want to receive from their cancer doctor for depression. This finding has implications for depression screening in clinical practice.

The new challenge for improving psychosocial cancer care: shifting to a system-based approach.

INTRODUCTION: There is a need to improve the psychosocial well-being of cancer patients. To date, intervention research has primarily focussed on improving psychosocial well-being through targeting singular aspects of care at the individual patient level. Sustainable, high-quality psychosocial care should address the issues faced by people diagnosed with cancer throughout the care pathway using a system-based approach. AIMS: To examine the number of intervention trials attempting to improve psychosocial cancer care that have implemented a system-based approach. METHOD: Five journals were selected and relevant studies across all years were extracted. Four criteria, argued to be essential characteristics of system-based change, were assessed: (1) establishing a culture change within the healthcare system/organisation, through designated leaders who endorse organisational goals; (2) adopting a multidisciplinary approach to change; (3) mapping the system and identifying points of leverage; and (4) measuring the impact of change and adapting establish feedback loops. RESULTS: The search strategy returned 1174 citations, of which five met the inclusion criteria. Of the intervention studies identified, three met none of the four defined criteria for a systems-based intervention, one study met criterion 2 only, and one study met all four criteria, however, was not a rigorous study design. CONCLUSIONS: This review of published psychosocial intervention trials in top-ranking psychosocial cancer care journals only found one study that met our criteria for evaluating system-based change. This is likely to be a consequence of the significant pragmatic and political barriers to conducting system-based intervention research.

Reducing alcohol-related harm in Australia: a simple data-based tool to assist prioritization of research and health care delivery in primary care.

INTRODUCTION: The detection of harmful alcohol use and the delivery of brief advice in primary care are less than optimal. Given limited health care resources, deciding where best to allocate funding to optimize health outcomes is imperative. A simple data-based tool could be useful when access to specialist health economic advice is unavailable. This study aimed to examine the utility of a simple data-based calculator to facilitate priority setting in general practice for reducing alcohol-related harm. METHODS: A simple algorithm was developed within Microsoft Excel to allow comparison of hypothetical intervention scenarios that aimed to increase detection and brief advice for harmful alcohol use in general practice. The calculator accommodated varying implementation costs, size of effect and reach for each scenario created. The incremental costs of the intervention scenarios, the incremental number of successes (i.e. abstinence or drinking at safe levels) and the incremental costs-effectiveness ratio (ICER) were calculated for each hypothetical scenario and compared with a usual care scenario. RESULTS: In the hypothetical scenarios modelled, increasing both the detection of harmful alcohol consumption and the provision of brief advice produced the greatest number of incremental successes above baseline. Increasing detection alone produced fewer incremental successes but was the most cost-effective approach, as indicated by the lowest ICER. DISCUSSION: The data-based calculator provides a simple method of exploring reach and cost-effectiveness outcomes without the need for any specific skills. Although this approach has limitations, the calculator can be used by decision makers to guide intervention planning.

Interactional skills training in undergraduate medical education: ten principles for guiding future research.

BACKGROUND: High-quality healthcare requires practitioners who have technical competence and communication skills. Medical practitioners need interpersonal skills for gathering and transferring information to their patients, in addition to general consultation skills. Appropriate information gathering increases the likelihood of an accurate diagnosis. Transferring information should be performed in a way that promotes patient understanding and increases the probability of adherence to physician recommendations. This applies to: (i) primary prevention such as smoking cessation; (ii) secondary prevention including preparation for potentially threatening interventions; and (iii) tertiary care, including breaking bad news regarding treatment and prognosis. DISCUSSION: This debate paper delineates factors associated with undergraduate medical communication skills training where robust research is needed. Ten key principles are presented and discussed, which are intended to guide future research in this field and ensure high quality studies with methodological rigour are conducted. The literature on communication skills training for medical school undergraduates continues to grow. A considerable portion of this output is represented by commentaries, descriptive studies or poorly designed interventions. As with any field of healthcare, quality research interventions are required to ensure practice is grounded in high-level evidence.

Correction to: Interactional skills training in undergraduate medical education: ten principles for guiding future research.

Following publication of the original article [1], the authors reported a referencing error under the heading 2. Use methodologically rigorous research to demonstrate that interactional skills can be acquired in the Background section of the published article.

Finding the optimal treatment model: A systematic review of treatment for co-occurring alcohol misuse and depression.

OBJECTIVES: Alcohol misuse and depression are commonly co-occurring conditions. To date, no review has examined the most efficacious treatment model for psychosocial treatment of co-occurring alcohol misuse and depression. This systematic review determined the: (i) methodological quality of publications examining psychosocial treatment of co-occurring alcohol misuse and depression using a sequential, parallel or integrated treatment model; and (ii) effectiveness of each dual treatment model compared to single treatment for those with co-occurring alcohol misuse and depression. METHODS: PubMed, Medline and PsycInfo databases were searched for studies which were included if they involved treatment for alcohol misuse and depression and could be classified into one of the three treatment models. Included studies were assessed using the Cochrane's Effective Practice and Organisation of Care risk of bias criteria. Relevant study characteristics and outcomes were extracted and are presented in a narrative review format. RESULTS: Seven studies met inclusion criteria. None were categorised as low risk on the risk of bias criteria. No studies examined a sequential model of treatment, three examined a parallel model and four examined an integrated model of dual-focussed treatment. The studies examining the parallel model and two out of four studies examining the effectiveness of an integrated model demonstrated greater improvement for alcohol or depression outcomes compared to control conditions. CONCLUSION: Evidence for the psychosocial treatment of co-occurring alcohol misuse and depression is limited to a handful of studies. The evidence has several methodological limitations, which impact the interpretation of the findings. Therefore, while international guidelines recommend integrated dual-focussed treatment for co-occurring conditions, there is little evidence supporting the superiority of this treatment format for co-occurring alcohol misuse and depression. High-quality research demonstrating improvements in patient outcomes is required to ensure recommendations for clinical practice are based on strong empirical evidence.

Methodological quality of teaching communication skills to undergraduate medical students: a mapping review.

BACKGROUND: Patient-clinician communication training is a core component of the undergraduate medical program. As with all areas of medicine, the best available evidence for teaching these skills should be incorporated into training programs. Examining the volume, type and design-quality of publications in this field can help to determine whether research is following a natural scientific progression to inform interactional skills training. This study aimed to review: (i) whether the proportion of publications examining teaching interactional skills to undergraduate medical students by study type, across three time-periods (2007-2008, 2011-2012, 2015-2016), changed over time (i.e. measurement, descriptive or interventions studies); and (ii) the proportion of intervention studies meeting Cochrane Effective Practice and Organisation of Care (EPOC) research design criteria. METHODS: Medline, PubMed, PsycInfo and the Cochrane Database were searched for studies published in English from 2007 to 2016. Title and abstract reviews were performed for the included years. Articles were examined against the inclusion/exclusion criteria and those included were coded into descriptive, measurement or intervention categories. RESULTS: A total of 243 relevant publications were identified. Fifty-two were published from 2007 to 2008, 75 from 2011 to 2012 and 116 from 2015 to 2016. Most identified studies were descriptive (63%), followed by measurement studies (22%) and intervention studies (15%). The proportion of descriptive studies increased significantly over time. However, the proportion of intervention studies did not change and the proportion of measures studies significantly decreased. Of the 37 intervention studies identified within the three time-periods, only 16 (43%) met EPOC study design criteria. CONCLUSIONS: The largest proportion of identified studies were descriptive, however, descriptive research is not sufficient to ensure communication skills training can effectively improve interactions between clinicians and patients. A more rigorous approach to research in this area is needed to inform education strategies.

The Validity of the Montgomery-Asberg Depression Rating Scale in an Inpatient Sample with Alcohol Dependence.

BACKGROUND: The Montgomery-Asberg Depression Rating Scale (MADRS) is commonly used to examine depressive symptoms in clinical settings, including facilities treating patients for alcohol addiction. No studies have examined the validity of the MADRS compared to an established clinical diagnostic tool of depression in this population. This study aimed to examine the following: (i) the validity of the MADRS compared to a clinical diagnosis of a depressive disorder (using the Structured Clinical Interview for DSM-IV-TR [SCID-IV-TR]) in patients seeking treatment for alcohol dependence (AD); (ii) whether the validity of the MADRS differs by type of SCID-IV-TR-based diagnosis of depression; and (iii) which items contribute to the optimal predictive model of the MADRS compared to a SCID-IV-TR diagnosis of a depressive disorder. METHODS: Individuals seeking treatment for AD and admitted to an inpatient unit were administered the MADRS at day 2 of their detoxification program. Clinical diagnoses of AD and depression were made via the SCID-IV-TR at the beginning of treatment. RESULTS: In total, 803 participants were included in the study. The MADRS demonstrated low overall accuracy relative to the clinical diagnosis of depression with an area under the receiver operating characteristic curve of 0.68. The optimal threshold for balancing sensitivity and specificity identified by the Euclidean distance was >14. This cut-point demonstrated a sensitivity of 66%, a specificity of 60%, a positive predictive value of 50%, and a negative predictive value of 75%. The MADRS performed slightly better for major depressive disorders compared to alcohol-induced depression. Items related to lassitude, concentration, and appetite slightly decreased the accuracy of the MADRS. CONCLUSIONS: The MADRS does not appear to be an appropriate substitute for a diagnostic tool among alcohol-dependent patients. The MADRS may, however, still be a useful screening tool assuming careful consideration of cut-points.

Do rates of depression vary by level of alcohol misuse in Australian general practice?

Limited data exist regarding co-occurring alcohol misuse and depression among general practice patients. This study examined the prevalence of depression by level of alcohol misuse, and the sociodemographic factors associated with depression and increased alcohol misuse severity. A cross-sectional survey was administered to 3559 Australian general practice patients. Patients completed their demographic details, the Patient Health Questionnaire (9-item) and the Alcohol Use Disorder Identification Test (Consumption items). The prevalence of alcohol misuse and depression was 6.7%, and depression prevalence varied significantly according to level of alcohol misuse (P<0.001). Age, gender, Aboriginality and number of chronic diseases were associated with depression and higher levels of alcohol misuse. These findings may assist General Practitioners in identifying those at risk of experiencing co-morbid depression and alcohol use, and aid in effective treatment and referral.

A consumer register: an acceptable and cost-effective alternative for accessing patient populations.

BACKGROUND: Population-based registries are increasingly used to recruit patient samples for research, however, they have several limitations including low consent and participation rates, and potential selection bias. To improve access to samples for research, the utility of a new model of recruitment termed the 'Consumer Register', that allows for direct patient recruitment from hospitals, was examined. This paper reports: (i) consent rates onto the register; (ii) preferred methods and frequency of contact; and (iii) the feasibility of establishing the register, including: (a) cost per person recruited to the register; (b) the differential cost and consent rates of volunteer versus paid data collectors; and (c) participant completion rates. METHODS: A cross-sectional survey was conducted in five outpatient clinics in Australia. Patients were approached by volunteers or paid data collectors and asked to complete a touch-screen electronic survey. Consenting individuals were asked to indicate their willingness and preferences for enrolment onto a research register. Descriptive statistics were used to examine patient preferences and linear regression used to model the success of volunteer versus paid data collectors. The opportunity and financial costs of establishing the register were calculated. RESULTS: A total of 1947 patients (80.6 %) consented to complete the survey, of which, 1486 (76.3 %) completed the questionnaire. Of the completers, the majority (69.4 %, or 1032 participants) were willing to be listed on the register and preferred to be contacted by email (50.3 %). Almost 39 % of completers were willing to be contacted three or more times in a 12 month period. The annual opportunity cost of resources consumed by the register was valued at $37,187, giving an opportunity cost per person recruited to the register of $36. After amortising fixed costs, the annual financial outlay was $23,004 or $22 per person recruited to the register. Use of volunteer data collectors contributed to an annual saving of $14,183, however paid data collectors achieved significantly higher consent rates. Successful enrolment onto the register was completed for 42 % of the sample. CONCLUSIONS: A Consumer Register is a promising and feasible alternative to population-based registries, with the majority of participants willing to be contacted multiple times via low-resource methods such as email. There is an effectiveness/cost trade off in the use of paid versus volunteer data collectors.

Effectiveness of interventions utilising telephone follow up in reducing hospital readmission within 30 days for individuals with chronic disease: a systematic review.

BACKGROUND: Rates of readmission to hospital within 30 days are highest amongst those with chronic diseases. Effective interventions to reduce unplanned readmissions are needed. Providing support to patients with chronic disease via telephone may help prevent unnecessary readmission. This systematic review aimed to determine the methodological quality and effectiveness of interventions utilising telephone follow up (TFU) alone or in combination with other components in reducing readmission within 30 days amongst patients with cardiovascular disease, chronic respiratory disease and diabetes. METHODS: A systematic search of MEDLINE, the Cochrane Library and EMBASE were conducted for articles published from database inception to 19(th) May 2015. Interventions which included TFU alone, or in combination with other components, amongst patients with chronic disease, reported 30 day readmission outcomes and met Effective Practice and Organisation of Care design criteria were included. The titles and abstracts of all identified articles were initially assessed for relevance and rejected on initial screening by one author. Full text articles were assessed against inclusion criteria by two authors with discrepancies resolved through discussion. RESULTS: Ten studies were identified, of which five were effective in reducing readmissions within 30 days. Overall, the methodological quality of included studies was poor. All identified studies combined TFU with other intervention components. Interventions that were effective included three studies which provided TFU in addition to pre-discharge support; and two studies which provided TFU with both pre- and post-discharge support which included education, discharge planning, physical therapy and dietary consults, medication assessment, home visits and a resident curriculum. There was no evidence that TFU and telemedicine or TFU and post-discharge interventions was effective, however, only one to two studies examined each of these types of interventions. CONCLUSIONS: Evidence is inconclusive for the effectiveness of interventions utilising TFU alone or in combination with other components in reducing readmissions within 30 days in patients with chronic disease. High methodological quality studies examining the effectiveness of TFU in a standardised way are needed. There is also potential importance in focusing interventions on enhancing provider skills in patient education, transitional care and conducting TFU.

Oncology patients overwhelmingly support tissue banking.

BACKGROUND: Translational biomedical research relies on the availability of human tissue to explore disease aetiology and prognostic factors, with the objective of developing better targeted treatments. The establishment of biobanks poses ongoing ethical considerations in relation to donors. This is a quantitative study exploring medical oncology patients' preferences for contributing to tissue biobanks. METHODS: The objectives of this study were to explore oncology patients' preferences about tissue banking, including: 1) willingness to donate; 2) factors influencing donation decisions; 3) preferences about the use of donated tissue including permission systems, data linkage, and communication about research findings to donors. A cross-sectional survey was conducted in two tertiary oncology outpatient clinics. Eligible patients were approached by volunteers to complete a touchscreen survey in waiting rooms or while receiving intravenous therapy. Consenting participants completed demographic questions and received up to 12 previously validated items exploring preferences for donating tissue. RESULTS: 224 oncology outpatients participated over a ten month period (69.1 % consent rate; 64.4 % completion rate). Most participants were female (54 %), were a mean age of 62 years, and diagnosed with breast (26 %) and bowel (20 %) cancer. Most participants indicated willingness to donate tissue (84 %) and for their sample to be stored for future use (96 %). Participants preferred a blanket consent approach (71 %), samples to be linked to medical records (62 %) and for general results of the research (79 %) to be provided to them. Factors influencing willingness to donate tissue included personal (85 %) or familial health benefits (88 %) and a sense of duty to future patients (82 %). CONCLUSIONS: The overwhelming majority of oncology patients are willing to participate in a tissue bank, providing some support to explore 'opt-out' models of consent. To enhance patient acceptability, tissue banking programs should: (i) consider allowing blanket informed consent as well as opt-in models of consent; (ii) develop protocols allowing feedback of information about samples in line with patient preferences; (iii) provide clear information to potential donors about the benefits arising from donation.

Investigating the effect of an online enhanced care program on the emotional and physical wellbeing of patients discharged from hospital with acute decompensated heart failure: Study protocol for a randomised controlled trial: Enhanced care program for heart failure.

Objective: Depression is highly prevalent and associated with increased hospitalisations and mortality among patients with heart failure (HF). This study will evaluate the effectiveness and cost-effectiveness of an online wellbeing program for patients discharged from hospital with acute decompensated heart failure (ADHF) in (i) improving emotional and physical wellbeing, and (ii) decreasing healthcare utilisation. Methods: Two-arm randomised controlled trial. Eligible patients with ADHF will be recruited pre-discharge from two hospitals. Five hundred and seventy participants will be randomised to receive the intervention (online enhanced care program for HF: 'Enhanced HF Care') or usual care. Enhanced HF Care includes health education (11 micro-learning modules) and monitoring of depression and clinical outcomes via fortnightly/monthly surveys for 6 months, with participants offered tailored advice via video email and SMS. Cardiac nurses track real-time patient data from a dashboard and receive automated email alerts when patients report medium- or high-risk levels of depression or clinical symptoms, to action where needed. General practitioners also receive automated alerts if patients report medium- or high-risk survey responses and are encouraged to schedule a patient consultation. Results: Sixty-five participants enrolled to-date. Co-primary outcomes ('Minnesota Living with Heart Failure Questionnaire' Emotional and Physical subscales) and healthcare utilisation (secondary outcome) at 1- and 6-month post-recruitment will be compared between treatment arms using linear mixed effects regression models. Conclusions: This study has the potential to reduce the burden of depression for patients with HF by prioritising urgent mental health needs and clinical symptoms while simultaneously empowering patients with self-care knowledge. Trial registration: The trial was prospectively registered via the Australian New Zealand Clinical Trials Registry: ACTRN12622001289707. Issue date: 4 October 2022.