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Background: The quality of care provided in residential aged care facilities is largely dependent on the job satisfaction of employees and the organisational framework and systems that they provide care in. This study aimed to explore aged care staff perceptions of job satisfaction, regulation of the sector and the Royal Commission into Aged Care Quality and Safety., Methods: A cross-sectional survey conducted in 2019-early 2020 with staff employed in various roles at residential aged care services in Australia. The study specific survey collected views and experiences about working in the aged care sector as well as information about their role., Results: A total of 167 aged care staff completed the survey of which 71% worked in a direct care role. Most participants indicated they thought they were doing a worthwhile and important job (98%), were proud to work in the sector (94%) and found the job personally rewarding (94%). However, participants also reported feeling emotionally drained by the work (37%) and fatigued by having to face a day of work (30%). 72% of participants felt the Royal Commission would lead to improvements in the care provided to residents., Conclusion: Aged care staff have an overall positive feeling towards their work. Additional support including increasing skills to deliver high-quality care, creating a supportive work environment to reduce job stressors and changes to the way the sector is regulated, are likely to lead to improved care., (© 2023. The Author(s).)

Background: Although social housing provides access to safe and affordable housing, recent studies have found that social housing tenants consistently have lower levels of health and well-being compared to other people. Given this, there is a need to examine multimorbidity for social housing tenants., Methods: Secondary data analysis of the 2017-18 Australian National Health Survey (n = 14,327) compared the health of adults residing in social housing compared to people in other housing types (private rentals, homeowners, and homeowners/mortgagees)., Results: Most health factors examined were more prevalent in social housing tenants compared to those living in other housing types. Individual health problems identified as more highly prevalent in social housing tenants compared to all other housing types included mental health issues (43%), arthritis (36%), back problems (32%), hypertension (25%), asthma (22%) and COPD (11%). 24% of social housing tenants reported five or more health factors compared to 3-6% of people in other housing types., Conclusions: Although these findings are not unexpected, they provide more detailed evidence that social housing providers and policy makers should consider when planning future initiatives., (© 2023. The Author(s).)

Background: Australian paramedics must engage in continuing professional development (CPD), including self-directed learning (SDL). This study aimed to examine paramedics' attitudes towards training and learning activities and perceptions about what could increase engagement in self-directed CPD., Methods: A cross-sectional survey was conducted with New South Wales Ambulance paramedics. The 48-item survey examined learning attitudes, attitudes towards SDL and socio-demographic and professional characteristics., Results: Most of the 149 participants (19% consent rate) were male (74.5%) and worked full-time (96.5%). All participants agreed that paramedics should reflect on the quality of their practice (100%) and most were committed to undertaking learning to improve their skills and capability (95.2%). However, 26.3% of participants did not feel motivated to undertake learning and 58.9% did not feel supported. Paramedics reported neutral to modestly positive attitudes towards SDL. Most participants agreed they would be more likely to engage in SDL if they had access to training equipment at their station (91%) and dedicated time during work hours (90.4%)., Conclusion: Paramedics are highly committed to undertaking CPD. Increased engagement may be supported by providing SDL materials at work locations and ensuring dedicated time for learning during work hours., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Fear of disease may act as a barrier to screening or early diagnosis. This cross-sectional survey of 355 people attending outpatient clinics at one Australian hospital found that cancer (34%) and dementia (29%) were the most feared diseases. Participants aged 65 years and over feared dementia the most., (© 2023. The Author(s).)

Background: In 2018, Eswatini had the world's highest age-standardised cervical cancer incidence rate. Cervical cancer screening reduces women's risk of invasive cervical cancer. Data on adherence to cervical cancer screening recommendations in Eswatini are scarce. The purpose of the current study was to determine Eswatini women's self-reported adherence to cervical cancer screening recommendations, attitudes toward screening, and factors associated with non-adherence., Methods: A cross-sectional survey of women (n = 377) aged 25 to 59 accessing primary healthcare clinics (n = 4) in Eswatini assessed screening participation, attitudes and knowledge regarding cervical cancer screening, and socio-demographic variables. Adjusted logistic regression was used to assess factors associated with non-adherence to Eswatini cervical cancer screening recommendations., Results: One hundred and sixty-six (44%) women were classified as adherent to cervical cancer screening recommendations. Attitudinal barriers endorsed by over one-third of participants included a perceived low risk of cervical cancer (n = 161, 43%) and a view that screening is likely to be painful (n = 146, 38%). Participants had higher odds of being classified as non-adherent if they: were single compared with married (OR = 1.78, 95% CI: 1.05, 3.01, p = 0.03), perceived screening as likely painful (OR = 4.43, 95% CI: 2.62, 7.46, p < 0.001); and had not been advised by a doctor/ nurse to screen (OR = 2.82, 95% CI: 1.71, 4.64, p < 0.001). Also, a 1-year increase in age was associated with an increase in the odds of being classified as non-adherent (OR = 1.42, 95% CI: 1.39, 1.45, p = 0.01)., Conclusions: Self-reported adherence was moderate among this group of women. Tailored interventions are needed to increase participation in cervical cancer screening, especially for those women with characteristics associated with being classified as non-adherent. Primary healthcare clinic nurses (and other health providers) may contribute toward improving participation in cervical cancer screening by advising eligible women to screen and providing health education addressing negative attitudes toward screening., (© 2023. The Author(s).)

Background: Exploring sociodemographic and disease characteristics that contribute to patient-reported outcomes can inform targeting of strategies to support recovery and adaptation to stroke. This study aimed to examine among a sample of stroke survivors at three months post-hospital discharge: (1) self-reported physical and mental health quality of life scores; (2) self-reported depressive and anxiety symptoms; and (3) sociodemographic and clinical predictors of these outcomes., Methods: This cross-sectional survey study recruited stroke survivors from eight hospitals in one Australian state. Adult survivors recently discharged from hospital stroke wards (within 3 months) were mailed a study information package and invited to complete a pen-and paper survey. Survey items assessed: quality of life (SF12v2), depression (PHQ-9), anxiety (GAD-7) and sociodemographic and clinical characteristics. Predictors were examined using multiple linear regression analysis., Results: Of the 1161 eligible patients who were posted a recruitment pack, 401 (35%) returned a completed survey. Participants reported a mean SF-12v2 Physical Composite Score (PCS) quality of life score of 44.09 (SD = 9.57); and a mean SF-12v2 Mental Composite Score (MCS) quality of life score of 46.84 (SD = 10.0). Approximately one third of participants (34%; n = 132) were classified as depressed (PHQ-9 ≥ 10); and 27% (n = 104) were classified as anxious (GAD-7 ≥ 8). Lower PCS was associated with being female, not employed and having a comorbid diagnosis of diabetes and atrial fibrillation. Lower MCS was associated with a history of transient ischemic attack (TIA). Males and those with higher levels of education, had greater odds of having lower depression severity; those with a history of TIA or diabetes had lower odds of having lower depression severity. Males had greater odds of having lower anxiety severity; those with a history of TIA had lower odds of having lower anxiety severity., Conclusion: Sub-groups of stroke survivors may be at-risk of poorer quality of life and psychological morbidity in the early post-discharge phase. These findings support the role of early identification and prioritisation of at-risk survivors at discharge, as they may require modifications to standard hospital discharge processes tailored to their level of risk., (© 2023. The Author(s).)

Background: For the benefits of advance care planning to be realised during a hospital admission, the treating team must have accurate knowledge of the law pertaining to implementation of advance care directives (ACDs) and substitute decision making., Aims: To determine in a sample of Junior Medical Officers (JMOs): (1) knowledge of the correct order to approach people as substitute decision makers if a patient does not have capacity to consent to treatment; (2) knowledge of the legal validity of ACDs when making healthcare decisions for persons without capacity to consent to treatment, including the characteristics associated with higher knowledge; and (3) barriers to enacting ACDs., Methods: A cross-sectional survey was conducted at five public hospitals in New South Wales, Australia. Interns, residents, registrars, and trainees on clinical rotation during the recruitment period were eligible to participate. Consenting participants completed an anonymous pen-and-paper survey., Results: A total of 118 JMOs completed a survey (36% return rate). Fifty-five percent of participants were female and 56.8% were aged 20-29 years. Seventy-five percent of JMOs correctly identified a Guardian as the first person to approach if a patient did not have decision-making capacity, and 74% correctly identified a person's spouse or partner as the next person to approach. Only 16.5% identified all four persons in the correct order, and 13.5% did not identify any in the correct order. The mean number of correct responses to the questions assessing knowledge of the legal validity of ACDs was 2.6 (SD = 1.1) out of a possible score of 6. Only 28 participants (23.7%) correctly answered four or more knowledge statements correctly. None of the explored variables were significantly associated with higher knowledge of the legal validity of ACDs. Uncertainty about the currency of ACDs and uncertainty about the legal implications of relying on an ACD when a patient's family or substitute decision maker disagree with it were the main barriers to enacting ACDs., Conclusion: JMOs knowledge of the legal validity of ACDs for persons without decision making capacity and the substitute decision making hierarchy is limited. There is a clear need for targeted education and training to improve knowledge in this area for this cohort., (© 2022. The Author(s).)

Background: Junior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors' decision-making processes when treating people with dementia who have advance care directives (ACDs), or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: (1) their legal compliance and decision-making process related to treatment decisions; (2) the factors influencing their clinical decision-making; and (3) the factors associated with accurate responses to one hypothetical vignette., Method: A cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: (1) bacterial pneumonia; or (2) suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette., Results: Overall, 116 junior doctors responded (35% consent rate). In Vignette 1, 58% of respondents (n = 67/116) selected the legally compliant option (i.e. not commence treatment). Participants who chose the legally compliant option perceived 'following patient wishes' (n = 32/67; 48%) and 'legal requirements to follow ACDs' (n = 32/67; 48%) as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the 'ACD is relevant in my decision-making process, but other factors are more relevant' (n = 14/37; 38%). In Vignette 2, 72% of respondents (n = 83/116) indicated they would commence treatment (i.e. not follow the ACD) and 18% (n = 21/116) selected they would not commence treatment. (i.e. follow the ACD). Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario., Conclusions: There are critical gaps in junior doctors' compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors' clinical decision-making and ensure compliance with the law is required., (© 2022. The Author(s).)

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., (© 2022. The Author(s).)

Background: Providing a timely and accurate diagnosis of dementia and delivering appropriate support following a diagnosis are essential to allow individuals and their families to plan for the future. Recent studies suggest that provision of diagnosis and post-diagnosis support is suboptimal. This study explored geriatricians' views about strategies to improve quality of care across these domains., Methods: An anonymous online survey of geriatricians and advanced trainees in one Australian state was conducted. An Expert Advisory Group of geriatricians, behavioural scientists and consumers proposed strategies to improve quality of care in relation to diagnosis and post-diagnosis support for people with dementia, which formed the survey items. Potential strategies were guided by, but not limited to, dementia and chronic care guidelines. Participants were asked the extent to which they agreed that implementing each of the proposed strategies would improve the quality of dementia care., Results: Of 59 participants (response rate 42%), all agreed that improving accessibility of geriatricians would improve the accuracy and timeliness of diagnosis. Over 90% were supportive of strategies to improve capacity of general practitioners to accurately diagnose dementia. Between 97-100% agreed that information provided following diagnosis should encompass symptom progression, treatments, psychological supports, and advance care planning. Just over two-thirds thought that life expectancy should be discussed at this time. There were high levels of support for strategies already included in existing dementia care guidelines, however geriatricians also agreed with a range of possible strategies not currently included in guidelines., Conclusions: Geriatricians perceive that timeliness and accuracy of dementia diagnosis may be improved by increasing access to geriatricians and training general practitioners in diagnosing dementia. They also believe it is appropriate to provide information at the time of diagnosis across a comprehensive range of areas, including potentially sensitive topics such as advance care planning. Future studies should explore the views of other groups of health care providers and consumers about these approaches. The strategies proposed should be considered for inclusion in future dementia care guidelines., (© 2022. The Author(s).)

Background: Aboriginal and/or Torres Strait Islander people experience dementia at a rate three to five times higher than the general Australian population. Aboriginal Community Controlled Health Services (ACCHSs) have a critical role to play in recognising symptoms of cognitive impairment, facilitating timely diagnosis of dementia, and managing the impacts of dementia. Little is known about the barriers and enablers to Aboriginal people receiving a timely dementia diagnosis and appropriate care once diagnosed. This study aims to explore, from the perspective of healthcare providers in the ACCHS sector across urban, regional and remote communities, the barriers and enablers to the provision of dementia diagnosis and care., Methods: A qualitative study involving semi-structured interviews with staff members working in the ACCHS sector. Aboriginal Health Workers, General Practitioners, nurses, practice or program managers, and Chief Executive Officers were eligible to participate. Consenting ACCHS staff completed a telephone interview administered by a trained interviewer. Interviews were audio-recorded, transcribed, and analysed using qualitative content analysis., Results: Sixteen staff from 10 ACCHSs participated. Most participants perceived their communities had a limited understanding of dementia. Symptoms of dementia were usually noticed by the GP or another healthcare worker at the ACCHS who had an ongoing relationship with the person. Most participants reported that their service had established referral pathways with either hospital-based geriatricians, geriatricians located with aged care assessment teams, or specialists who visited communities periodically. Key enablers to high quality dementia care included the use of routine health assessments as a mechanism for diagnosis; relationships within communities to support diagnosis and care; community and family relationships; comprehensive and holistic care models; and the use of tailored visual resources to support care. Key barriers to high quality care included: denial and stigma; dementia being perceived as a low priority health condition; limited community awareness and understanding of dementia; lack of staff education and training about dementia; and numerous gaps in service delivery., Conclusions: Substantially increased investments in supporting best-practice diagnosis and management of dementia in Aboriginal communities are required. ACCHSs have key strengths that should be drawn upon in developing solutions to identified barriers to care., (© 2021. The Author(s).)

Background: Being diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan., Methods: Participants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants' most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference., Results: The most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85., Conclusions: The findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.

Background: Aboriginal and Torres Strait Islander people have high rates of avoidable hospital admissions for chronic conditions, however little is known about the frequency of avoidable admissions for this population. This study examined trends in avoidable admissions among Aboriginal and non-Aboriginal people with chronic conditions in New South Wales (NSW), Australia., Methods: A historical cohort analysis using de-identified linked administrative data of Aboriginal patients and an equal number of randomly sampled non-Aboriginal patients between 2005/06 to 2013/14. Eligible patients were admitted to a NSW public hospital and who had one or more of the following ambulatory care sensitive chronic conditions as a principal diagnosis: diabetic complications, asthma, angina, hypertension, congestive heart failure and/or chronic obstructive pulmonary disease. The primary outcomes were the number of avoidable admissions for an individual in each financial year, and whether an individual had three or more admissions compared with one to two avoidable admissions in each financial year. Poisson and logistic regression models and a test for differences in yearly trends were used to assess the frequency of avoidable admissions over time, adjusting for sociodemographic variables and restricted to those aged ≤75 years., Results: Once eligibility criteria had been applied, there were 27,467 avoidable admissions corresponding to 19,025 patients between 2005/06 to 2013/14 (71.2% Aboriginal; 28.8% non-Aboriginal). Aboriginal patients were 15% more likely than non-Aboriginal patients to have a higher number of avoidable admissions per financial year (IRR = 1.15; 95% CI: 1.11, 1.20). Aboriginal patients were almost twice as likely as non-Aboriginal patients to experience three or more avoidable admissions per financial year (OR = 1.90; 95% CI = 1.60, 2.26). There were no significant differences between Aboriginal and non-Aboriginal people in yearly trends for either the number of avoidable admissions, or whether or not an individual experienced three or more avoidable admissions per financial year (p = 0.859; 0.860 respectively)., Conclusion: Aboriginal people were significantly more likely to experience frequent avoidable admissions over a nine-year period compared to non-Aboriginal people. These high rates reflect the need for further research into which interventions are able to successfully reduce avoidable admissions among Aboriginal people, and the importance of culturally appropriate community health care.

Background: The current study aimed to further our understanding of second opinions among medical oncology patients by examining the proportion of patients who sought a second opinion about their cancer treatment, and why., Methods: The study was conducted between 2013 and 2015 in three medical oncology clinics located in public hospitals in Australia: in metropolitan New South Wales, metropolitan Queensland, and in Tasmania. Those patients who provide written informed consent were asked to complete a brief paper and pencil survey in the clinic containing questions on sociodemographic, disease and treatment characteristics. Approximately 1 month later, participants were mailed a second paper and pencil survey which contained questions about whether they had sought a second opinion and their motivation for doing so. Non-responders were followed up by letter at 3 and 6 weeks., Results: Of 823 patients screened for eligibility, 698 eligible patients, 612 provided consent. Of those who consented, 355 completed both the initial survey and the second survey and were included in the analyses. Of the 57 patients who sought a second opinion, the most frequent reasons given for doing so were the need for reassurance (49.1%) and the need to consider the range of treatment options (41.8%). Of the 297 (83.6%) participants who did not seek a second opinion, the main reason was confidence in the first doctor (88.7%). Only 3.1% patients did not know that they could ask for a second opinion. Occasionally the doctor will initiate the referral for a second opinion., Conclusions: Our study suggests that a minority of cancer patients seek a second opinion at some phase during their care. Most did so for reassurance or to ensure that they had covered all of the treatment options and not because of discomfort or distrust of their treating doctor. Few patients reported a lack of awareness of second opinions. This suggests that second opinions form part of a patient-centred approach to information provision about care options. Whether the second opinion improves the quality of care or indeed outcomes has been difficult to demonstrate.

Background: Despite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. This study aimed to determine in a sample of older and seriously ill inpatients, the proportion who had: 1) engaged in four advance care planning (ACP) activities; 2) not engaged in ACP activities but wanted to; and 3) reasons why they had not engaged., Methods: Cross-sectional face-to-face standardised interview survey with inpatients in a tertiary referral centre who were either: aged 80+ years; aged 55+ years with progressive chronic disease(s); or judged by treating clinicians as having a life expectancy of less than 12 months. Patients indicated whether they had engaged in four ACP activities: (1) appointed medical substitute-decision-maker(s), (2) recorded end-of-life wishes in an advance directive or care plan; and talked about their end-of-life wishes with their: (3) support persons and/or (4) doctors. Patients who had not engaged in activities were asked whether they wished this to occur and reasons why., Results: One hundred eighty-six inpatients consented to the study (80% of approached). Of these, 9% (n = 16) had engaged in four ACP activities; 27% (n = 50) had not engaged in any. Half (n = 94, 52%) had appointed a medical substitute-decision-maker, 27% (n = 50) had recorded wishes in an advance directive or care plan, 51% (n = 90) had talked about their end-of-life wishes with support persons and 27% (n = 48) had talked with their doctor. Patients who wanted to, but had not, engaged in the four ACP activities were unaware they could record wishes or appoint decision-makers, or indicated providers had not initiated conversations., Conclusion: Relatively few inpatients had engaged in all four ACP activities. More inpatients had discussed end of life issues with family and appointed substitute decision makers, than completed written documents or talked with doctors. Community education and a more active role for community and hospital-based providers in supporting patients and families to collaboratively resolve end-of-life decisions may increase the probability wishes are known and followed.

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.

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.

Background: For patients undergoing breast cancer surgery, the pre- and post-operative periods can be characterised by feelings of fear, anxiety, and uncertainty. Telehealth offers an opportunity to provide perioperative support to surgical patients and overcome some of the barriers to accessing care., Aims: In order to inform the development of a telehealth support model for women undergoing breast cancer surgery, this feasibility study explored: (a) access and preferences for telehealth; and (b) the proportion of participants who reported problems with unmet information and preparation needs related to surgery, post-operative pain, anxiety, and quality of life., Methods: Women aged 18-85 years attending for a follow-up appointment within 2 months of undergoing surgery for breast cancer were asked to complete a baseline (T1) and 1-month follow-up (T2) survey. Surveys assessed telehealth access and preferences, preparatory information receipt and preparedness for surgery, and anxiety, pain, and quality of life., Results: Fifty-three T1 (45% consent rate) and 50 T2 surveys were returned. One fifth of the sample (20%) travelled 50 km or more to access surgery. Most participants had access to a device suitable for telehealth (75%); however, only 15% indicated that they would have accepted a teleconsultation with their surgeon post-operatively if this had been offered. The most frequently reported unmet preparatory information needs were information about: how long it would take to recover from the surgery; how other patients had experienced similar surgery; and practical needs such as parking or transport. Approximately one third of the sample reported potentially clinically significant symptoms of anxiety, and less than one in ten women reported moderate levels of pain., Conclusions: While the majority of women had access to a suitable device and internet connection for telehealth, less than one fifth would have accepted a home-based video-link teleconsultation with their surgeon post-operatively. A small proportion of the sample would have liked more information about aspects of surgery including about managing side effects and anxiety. The key findings in terms of teleconsultation preferences and information and preparation needs from this study will be incorporated into the telehealth support model being developed., Competing Interests: Ethical approval for the study was obtained from the University of Newcastle Human Research Ethics Committee (Ref: H-2015-0412). All study participants provided written informed consent to participate.Not applicable.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Background: Medical oncology outpatients are a group for whom advance care planning (ACP) activities are particularly relevant. Patient views can help prioritise areas for improving end of life communication. The study aimed to determine in a sample of medical oncology outpatients: (1) the perceived importance of participating in ACP activities; (2) the proportion of patients who have ever participated in ACP activities; and (3) the proportion of patients who had not yet participated in ACP activities who were willing to do so in next month., Methods: Adult medical oncology outpatients in two Australian cancer treatment centres were consecutively approached to complete a pen-and-paper survey. Items explored perceived importance, previous participation, and willingness to participate across key ACP activities including: discussing wishes with their family or doctor; recording wishes in a written document; appointing a substitute decision maker (SDM); and discussing life-expectancy., Results: 185 participants completed the survey (51% consent rate). Most patients agreed it was important to: discuss end of life wishes with family (85%) and doctors (70%) and formally record wishes (73%). Few had discussed end of life wishes with a doctor (11%), recorded their wishes (15%); chosen a SDM (28%); discussed life expectancy (30%); or discussed end of life wishes with family (30%). Among those who had not participated in ACP, most were willing to discuss life expectancy (66%); discuss end of life wishes with family (57%) and a doctor (55%); and formally record wishes (56%) in the next month. Fewer wanted to appoint a SDM (40%)., Conclusion: Although medical oncology outpatients perceive ACP activities are important, rates of uptake are relatively low. The willingness of many patients to engage in ACP activities suggests a gap in current ACP practice. Efforts should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, and better education and training of health care providers in initiating conversations about end of life issues.

Background: Admitted patients with chronic disease are at high risk of an unplanned hospital readmission, however, little research has examined unplanned readmission among Aboriginal people in Australia. This study aimed to examine whether rates of unplanned 28 day hospital readmission, or death, significantly differ between Aboriginal and non-Aboriginal patients in New South Wales, Australia, over a nine-year period., Methods: A retrospective cohort analysis of a sample of de-identified linked hospital administrative data was conducted. Eligible patients were: 1) aged ≥18 years old, 2) admitted to an acute facility in a NSW public hospital between 30th June 2005 and 1st July 2014, and 3) admitted with either cardiovascular disease, chronic respiratory disease, diabetes or renal disease. The primary composite outcome was unplanned readmission or death within 28 days of discharge. Generalized linear models and a test for trend were used to assess rates of unplanned readmission or death over time in Aboriginal and non-Aboriginal patients with chronic disease, accounting for sociodemographic variables., Results: The final study cohort included 122,145 separations corresponding to 48,252 patients (Aboriginal = 57.2%, n = 27,601; non-Aboriginal = 42.8%, n = 20,651). 13.9% (n = 16,999) of all separations experienced an unplanned readmission or death within 28 days of discharge. Death within 28 days of discharge alone accounted for only a small number of separations (1.4%; n = 1767). Over the nine-year period, Aboriginal separations had a significantly higher relative risk of an unplanned readmission or death (Relative risk = 1.34 (1.29, 1.40); p-value < 0.0001) compared with non-Aboriginal separations once adjusted for sociodemographic, disease variables and restricted to < 75 years of age. A test for trend, including an interaction between year and Aboriginal status, showed there was no statistically significant change in proportions over the nine-year period for Aboriginal and non-Aboriginal separations (p-value for trend = 0.176)., Conclusion: Aboriginal people with chronic disease had a significantly higher risk of unplanned readmission or death 28 days post discharge from hospital compared with non-Aboriginal people, and there has been no significant change over the nine year period. It is critical that effective interventions to reduce unplanned readmissions for Aboriginal people are identified.

Background: Recently the dementia field has shifted focus away from the early diagnosis debate in favour of 'timely' diagnosis. 'Timely' diagnosis disclosure takes into consideration the preferences and unique circumstances of the individual. Determining when diagnosis disclosure is 'timely' may be particularly complex if there are differing views between the individual, their family, and their health care providers regarding disclosure. This study explores the preferences of consumers regarding when a diagnosis of dementia should be communicated., Methods: A cross-sectional survey was conducted with English-speaking adults attending outpatient clinics at an Australian hospital. Participants were recruited by a research assistant in the clinic waiting room and invited to complete the survey on a web-connected iPad. The survey included questions examining socio-demographics and experience with dementia. Two scenarios were used to explore preferences for timing of diagnosis disclosure., Results: Of 446 participants, 92% preferred a diagnosis of dementia to be disclosed as soon as possible. Preferences were not associated with socio-demographics or previous dementia experience. Most participants also preferred disclosure to occur as soon as possible if their spouse or partner was diagnosed with dementia (88%). There was strong correlation between preferences for self and preferences for spouse (0.91)., Conclusions: These findings provide guidance to health care providers about preferences for disclosure of a dementia diagnosis, and may help to overcome potential barriers to timely diagnosis. As the prevalence of dementia increases, consumers' preference for diagnosis to occur as soon as possible has important implications for the health system.

Objective: Cancer patients and their support persons commonly feel overwhelmed when being confronted with their diagnosis and treatment options. We used a DCE to examine patients' and support persons' preferences for: (i) attending one 40 min consultation or two 20 min consultations when making a cancer treatment decision; and for (ii) receiving additional information in written form only or in both written and online forms. Here we focus on support persons' preferences and whether they differ from patients' preferences., Results: 159 adult medical oncology patients and 64 of their support persons took part in this study. Participants were presented with a set of hypothetical scenarios and asked to indicate their most and least preferred scenario. 92% of support persons (n = 59) completed the DCE. Most preferred to receive two consultations along with written and online information (n = 30, 51%). This was the only scenario that was chosen by statistically significantly more support persons (p =0.037). The proportions of patients and support persons choosing each scenario did not differ significantly from each other (p >0.05). Our findings suggest that when making cancer treatment decisions, clinicians should consider offering patients and support persons written and online information, combined with two shorter consultations.

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.

Background: Chronic diseases are more prevalent and occur at a much younger age in Aboriginal people in Australia compared with non-Aboriginal people. Aboriginal people also have higher rates of unplanned hospital readmissions and emergency department presentations. There is a paucity of research on the effectiveness of follow up programs after discharge from hospital in Aboriginal populations. This study aimed to assess the impact of a telephone follow up program, 48 Hour Follow Up, on rates of unplanned hospital readmissions, unplanned emergency department presentations and mortality within 28 days of discharge among Aboriginal people with chronic disease., Methods: A retrospective cohort of eligible Aboriginal people with chronic diseases was obtained through linkage of routinely-collected health datasets for the period May 2009 to December 2014. The primary outcome was unplanned hospital readmissions within 28 days of separation from any acute New South Wales public hospital. Secondary outcomes were mortality, unplanned emergency department presentations, and at least one adverse event (unplanned hospital readmission, unplanned emergency department presentation or mortality) within 28 days of separation. Logistic regression models were used to assess outcomes among Aboriginal patients who received 48 Hour Follow Up compared with eligible Aboriginal patients who did not receive 48 Hour Follow Up., Results: The final study cohort included 18,659 patients with 49,721 separations, of which 8469 separations (17.0, 95% confidence interval (CI): 16.7-17.4) were recorded as having received 48 Hour Follow Up. After adjusting for potential confounders, there were no significant differences in rates of unplanned readmission or mortality within 28 days between people who received or did not receive 48 Hour Follow Up. Conversely, the odds of an unplanned emergency department presentation (Odds ratio (OR) = 0.92; 95% CI: 0.85, 0.99; P = 0.0312) and at least one adverse event (OR = 0.91; 95% CI: 0.85,0.98; P = 0.0136) within 28 days were significantly lower for separations where the patient received 48 Hour Follow Up compared with those that did not receive follow up., Conclusions: Receipt of 48 Hour Follow Up was associated with both a reduction in emergency department presentations and at least one  adverse event within 28 days of discharge, suggesting there may be merit in providing post-discharge telephone follow up to Aboriginal people with chronic disease.

Background: Advance personal planning is the process by which people consider, document and communicate their preferences for personal, financial and health matters in case they lose the ability to make decisions or express their wishes in the future., Discussion: Advance personal planning is most often undertaken by individuals who are seriously ill, often in the context of a medical crisis and/or at the time of admission to hospital. However, the clinical utility and legal validity of the planning process may be compromised in these circumstances. Patients may lack sufficient capacity to meaningfully engage in advance personal planning; there may be insufficient time to adequately reflect on and discuss wishes with key others; and there may also be limited opportunity for inter-professional input and collaboration in the process. Here, we propose an agenda for research to advance the science of advance personal planning by promoting a 'whole community' approach. Adoption of advance personal planning at a community level may be achieved using a variety of strategies including public media campaigns, intervening with professionals across a range of health care and legal settings, and mobilising support from influential groups and local government. One potentially promising method for encouraging earlier adoption of advance personal planning among a broader population involves a community action approach, whereby multiple evidence-based strategies are integrated across multiple access points. Community action involves calling on community members, professionals, community and/or government organisations to work collaboratively to design and systematically implement intervention strategies with the aim of bringing about desired behaviour change. An example of a community action trial to improving uptake and quality of advance personal planning is described., Conclusion: While promising, there is a need for rigorous evidence to demonstrate whether a community action approach is effective in establishing whole community adoption of advance personal planning.

Background: To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia., Methods: Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 - Dec 2016). Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer); then assessed against the Effective Practice and Organisation of Care (EPOC) methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed., Results: The number of publications increased by 13% each year (p < 0.001). Half were descriptive studies (n = 92, 50%) describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48%) reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10), multiple modalities (n = 9) or telephone (n = 15). Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time., Conclusion: Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.

Background: As in other areas of health delivery, there is a need to ensure that end-of-life care is guided by patient centred research. A systematic review was undertaken to examine the quantity and quality of data-based research aimed at improving the (a) processes and (b) outcomes associated with delivering end-of-life care in hospital settings., Methods: Medline, EMBASE and Cochrane databases were searched between 1995 and 2015 for data-based papers. Eligible papers were classified as descriptive, measurement or intervention studies. Intervention studies were categorised according to whether the primary aim was to improve: (a) end of life processes (i.e. end-of-life documentation and discussions, referrals); or (b) end-of-life outcomes (i.e. perceived quality of life, health status, health care use, costs). Intervention studies were assessed against the Effective Practice and Organisation of Care methodological criteria for research design, and their effectiveness examined., Results: A total of 416 papers met eligibility criteria. The number increased by 13% each year (p < 0.001). Most studies were descriptive (n = 351, 85%), with fewer measurement (n = 17) and intervention studies (n = 48; 10%). Only 18 intervention studies (4%) met EPOC design criteria. Most reported benefits for end-of-life processes including end-of-life discussions and documentation (9/11). Impact on end-of-life outcomes was mixed, with some benefit for psychosocial distress, satisfaction and concordance in care (3/7)., Conclusion: More methodologically robust studies are needed to evaluate the impact of interventions on end-of-life processes, including whether changes in processes translate to improved end-of-life outcomes. Interventions which target both the patient and substitute decision maker in an effort to achieve these changes would be beneficial.

Background: Colorectal cancer (CRC) survivors are at increased risk of developing the disease again. Surveillance guidelines are aimed at maximising the early detection of recurring or new cancers and pre-cancerous polyps. The frequency and type of surveillance recommended depends on the type of treatment for the initial CRC, the extent of colonoscopic investigation prior to treatment and the results of previous surveillance tests. This paper aimed to test the effect of a paper-based educational intervention to improve adherence to colonoscopy following treatment for colorectal cancer., Methods: People with a diagnosis of colorectal cancer within the last 10 months, aged ≥18 and English speaking were recruited through a population-based cancer registry in Australia. Participants were randomly allocated to either the intervention or control. Participants completed an interview at baseline. Self-reported participation in colonoscopy was obtained at 12 month followup by survey. Those allocated to the control received a generic pamphlet on colorectal cancer treatment; while intervention participants received a letter which provided specific information about guideline recommendations for surveillance colonoscopy. Rates of guideline adherence were compared between groups. The guideline recommendations for the timing of surveillance colonoscopy changed part way through the study. This change occurred after all intervention materials had been sent, but prior to all participants completing the 12 month follow up. Post hoc analyses were conducted to assess adherence to the new guidelines., Results: Of the 767 participants, 604 (79%) had had surgery, had stage I - III disease and completed the baseline interview within 12 months of diagnosis (intervention = 305; control = 299). There was no significant difference between those adherent to surveillance colonoscopy guidelines, in the control (67, 27%) and intervention groups (80, 31%) at followup (difference = 4.3% (95%CI:-3.7%, 12%), χ 2 (1df) = 1.09, P = 0.296). Overall, 246 (49%) participants were adherent to the new guidelines, compared to 147 (29%) adherent to the old guidelines., Conclusions: Results indicate the paper-based educational intervention is not effective in improving adherence to colorectal cancer surveillance guidelines for colonoscopy., Trial Registration Number: ACTRN12609000628246 Registration date: 28/07/2009.

Background: In Australia, 'Alcohol Management Plans' (AMPs) provide the policy infrastructure for State and Commonwealth Governments to address problematic alcohol use among Aboriginal and Torres Strait Islanders. We report community residents' experiences of AMPs in 10 of Queensland's 15 remote Indigenous communities., Methods: This cross-sectional study used a two-stage sampling strategy: N = 1211; 588 (48%) males, 623 (52%) females aged ≥18 years in 10 communities. Seven propositions about 'favourable' impacts and seven about 'unfavourable' impacts were developed from semi-structured interviews. For each proposition, one-sample tests of proportions examined participant agreement and multivariable binary logistic regressions assessed influences of gender, age (18-24, 25-44, 45-64, ≥65 years), residence (≥6 years), current drinking and Indigenous status. Confirmatory factor analyses estimated scale reliability (ρ), item loadings and covariances., Results: Slim majorities agreed that: AMPs reduced violence (53%, p = 0.024); community a better place to live (54%, 0.012); and children were safer (56%, p < 0.001). More agreed that: school attendance improved (66%, p < 0.001); and awareness of alcohol's harms increased (71%, p < 0.001). Participants were equivocal about improved personal safety (53%, p = 0.097) and reduced violence against women (49%, p = 0.362). The seven 'favourable' items reliably summarized participants' experiences of reduced violence and improved community amenity (ρ = 0.90). Stronger agreement was found for six 'unfavourable' items: alcohol availability not reduced (58%, p < 0.001); drinking not reduced (56%, p < 0.001)); cannabis use increased (69%, p < 0.001); more binge drinking (73%, p < 0.001); discrimination experienced (77%, p < 0.001); increased fines, convictions and criminal records for breaching restrictions (90%, p < 0.001). Participants were equivocal (51% agreed, p = 0.365) that police could enforce restrictions effectively. 'Unfavourable' items were not reliably reflected in one group (ρ = 0.48) but in: i) alcohol availability and consumption not reduced and ii) criminalization and discrimination. In logistic regressions, longer-term (≥ 6 years) residents more likely agreed that violence against women had reduced and that personal safety had improved but also that criminalization and binge drinking had increased. Younger people disagreed that their community was a better place to live and strongly agreed about discrimination. Current drinkers' views differed little from the sample overall., Conclusions: The present Government review provides an opportunity to reinforce 'favourable' outcomes while targeting: illicit alcohol, treatment and diversion services and reconciliation of criminalization and discrimination issues.

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.

Background: Socially disadvantaged groups, such as Aboriginal Australians, tend to have a high prevalence of multiple lifestyle risk factors, increasing the risk of disease and underscoring the need for services to address multiple health behaviours. The aims of this study were to explore, among a socially disadvantaged group of people attending an Aboriginal Community Controlled Health Service (ACCHS): a) readiness to change health behaviours; b) acceptability of addressing multiple risk factors sequentially or simultaneously; and c) preferred types of support services., Methods: People attending an ACCHS in regional New South Wales (NSW) completed a touchscreen survey while waiting for their appointment. The survey assessed participant health risk status, which health risks they would like to change, whether they preferred multiple health changes to be made together or separately, and the types of support they would use., Results: Of the 211 participants who completed the survey, 94 % reported multiple (two or more) health risks. There was a high willingness to change, with 69 % of current smokers wanting to cut down or quit, 51 % of overweight or obese participants wanting to lose weight and 44 % of those using drugs in the last 12 months wanting to stop or cut down. Of participants who wanted to make more than one health change, over half would be willing to make simultaneous or over-lapping health changes. The most popular types of support were help from a doctor or Health Worker and seeing a specialist, with less than a quarter of participants preferring telephone or electronic (internet or smart phone) forms of assistance. The importance of involving family members was also identified., Conclusions: Strategies addressing multiple health behaviour changes are likely to be acceptable for people attending an ACCHS, but may need to allow flexibility in the choice of initial target behaviour, timing of changes, and the format of support provided.

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.

Background: Radiotherapy for localised prostate cancer has many known and distressing side effects. The efficacy of group interventions for reducing psychological morbidity is lacking. This study investigated the relative benefits of a group nurse-led intervention on psychological morbidity, unmet needs, treatment-related concerns and prostate cancer-specific quality of life in men receiving curative intent radiotherapy for prostate cancer., Methods: This phase III, two-arm cluster randomised controlled trial included 331 men (consent rate: 72 %; attrition: 5 %) randomised to the intervention (n = 166) or usual care (n = 165). The intervention comprised four group and one individual consultation all delivered by specialist uro-oncology nurses. Primary outcomes were anxious and depressive symptoms as assessed by the Hospital Anxiety and Depression Scale. Unmet needs were assessed with the Supportive Care Needs Survey-SF34 Revised, treatment-related concerns with the Cancer Treatment Scale and quality of life with the Expanded Prostate Cancer Index -26. Assessments occurred before, at the end of and 6 months post-radiotherapy. Primary outcome analysis was by intention-to-treat and performed by fitting a linear mixed model to each outcome separately using all observed data., Results: Mixed models analysis indicated that group consultations had a significant beneficial effect on one of two primary endpoints, depressive symptoms (p = 0.009), and one of twelve secondary endpoints, procedural concerns related to cancer treatment (p = 0.049). Group consultations did not have a significant beneficial effect on generalised anxiety, unmet needs and prostate cancer-specific quality of life., Conclusions: Compared with individual consultations offered as part of usual care, the intervention provides a means of delivering patient education and is associated with modest reductions in depressive symptoms and procedural concerns. Future work should seek to confirm the clinical feasibility and cost-effectiveness of group interventions., Trial Registration: Australian and New Zealand Clinical Trials Registry ANZCTRN012606000184572 . 1 March 2006.

Background: Detection and management of antenatal risk factors is critical for improved maternal and infant outcomes. This study describes the proportion of pregnant women who self-reported being screened for and offered advice to manage antenatal risk factors in line with antenatal care recommendations; and the characteristics associated with rates of screening., Methods: A survey was undertaken with 223 (64 % of eligible) pregnant women recruited from an outpatient obstetrics clinic at a public hospital. Participants self-reported whether they were: (i) screened for 23 guideline-recommended risk factors during their antenatal visit; (ii) offered assistance to manage identified risk factor(s); and (iii) received assistance that was of benefit. Association between rate of screening and participant characteristics was examined using multivariate quantile regression., Results: Overall, 23 % of women reported that they were asked about every risk factor. Weight gain (48 %), diet (60 %) and oral health (31 %) were least frequently screened risk factors. The number of women who reported they were offered advice to manage identified risks and the value of that advice was perceived by women as suboptimal. Those women receiving shared care between a midwife and general practitioner, of Aboriginal or Torres Strait Islander descent, and without private health insurance reported being screened for a greater number of risk factors., Conclusions: Pregnant women report suboptimal rates of screening and management of antenatal risk factors. Initiatives to improve consistency in detection of antenatal risk factors and the application of appropriate interventions to manage those risk factors that are detected are required.

Background: There is evidence to suggest that decision aids improve a number of patient outcomes. However, little is known about the progression of research effort in this area over time. This literature review examined the volume of research published in 2000, 2007 and 2014 which tested the effectiveness of decision aids in improving cancer patient outcomes, coded by cancer site and decision type being targeted. These numbers were compared with the volume of research examining the effectiveness of strategies to increase the adoption of decision aids by healthcare providers., Methods: A literature review of intervention studies was undertaken. Medline, Embase, PsychInfo and Cochrane Database of Systematic Reviews were searched. The search was limited to human studies published in English, French, or German. Abstracts were assessed against eligibility criteria by one reviewer and a random sample of 20 % checked by a second. Eligible intervention studies in the three time periods were categorised by: i) whether they tested the effectiveness of decision aids, coded by cancer site and decision type, and ii) whether they tested strategies to increase healthcare provider adoption of decision aids., Results: Over the three time points assessed, increasing research effort has been directed towards testing the effectiveness of decision aids in improving patient outcomes (p < 0.0001). The number of studies on decision aids for cancer screening or prevention increased statistically significantly (p < 0.0001) whereas the number of studies on cancer treatment did not (p = 1.00). The majority of studies examined the effectiveness of decision aids for prostate (n = 10), breast (n = 9) or colon cancer (n = 7). Only two studies assessed the effectiveness of implementation strategies to increase healthcare provider adoption of decision aids., Conclusions: While the number of studies testing the effectiveness of decision aids has increased, the majority of research has focused on screening and prevention decision aids for only a few cancer sites. This neglects a number of cancer populations, as well as other areas of cancer care such as treatment decisions. Also, given the apparent effectiveness of decision aids, more effort needs to be made to implement this evidence into meaningful benefits for patients.

Background: Hematological cancer survivors are growing in number and increasingly rely on oral therapy. Given known poor outcomes associated with non-adherence and previous evidence that many patients do not fully adhere to their treatment regimen, this study aimed to determine the degree to which clinicians monitor adherence to oral medication in hematological cancer survivors., Methods: Data was combined from two cross-sectional surveys of a heterogeneous sample of 431 hematological cancer survivors recruited from three outpatient hematology clinics in three different states (n = 215) and one state cancer registry (n = 216) in Australia. Participants completed a self-administered survey that included demographic characteristics and a 7-item measure of medication adherence developed by the researchers specifically for the purpose of the studies., Results: Of the 431 participants, 37 % (n = 160) reported currently taking daily cancer-related medication. Of these, 14 % (n = 23) were found to be non-adherent with 'missing a dose' being the most commonly reported non-adherent behaviour. Only 41 % of survivors indicated that their hematologist or cancer clinician had 'always' asked about their cancer-related medication during their last six visits., Conclusions: Non-adherence to oral therapy remains a problem in hematological cancer survivors, yet clinicians in Australia do not appear to be regularly monitoring adherence in their patients. Given an increasing dependence on oral therapy in clinical hematology and medical oncology and the importance of medication adherence to optimising health outcomes, greater effort should be invested in developing effective interventions to improve support and adherence monitoring by cancer clinicians and GPs.

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.

Background: High rates of anxiety, depression and unmet needs are evident amongst haematological cancer patients undergoing treatment and their Support Persons. Psychosocial distress may be minimised by ensuring that patients are sufficiently involved in decision making, provided with tailored information and adequate preparation for potentially threatening procedures. To date, there are no published studies evaluating interventions designed to reduce psychosocial distress and unmet needs specifically in patients with haematological cancers and their Support Persons. This study will examine whether access to a web-based information tool and nurse-delivered telephone support reduces depression, anxiety and unmet information needs for haematological cancer patients and their Support Persons., Methods/design: A non-blinded, parallel-group, multi-centre randomised controlled trial will be conducted to compare the effectiveness of a web-based information tool and nurse-delivered telephone support with usual care. Participants will be recruited from the haematology inpatient wards of five hospitals in New South Wales, Australia. Patients diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, Burkitt's lymphoma, Lymphoblastic lymphoma (B or T cell), or Diffuse Large B-Cell lymphoma and their Support Persons will be eligible to participate. Patients and their Support Persons will be randomised as dyads. Participants allocated to the intervention will receive access to a tailored web-based tool that provides accurate, up-to-date and personalised information about: cancer and its causes; treatment options including treatment procedures information; complementary and alternative medicine; and available support. Patients and Support Persons will complete self-report measures of anxiety, depression and unmet needs at 2, 4, 8 and 12 weeks post-recruitment. Patient and Support Person outcomes will be assessed independently., Discussion: This study will assess whether providing information and support using web-based and telephone support address the major psychosocial challenges faced by haematological patients and their Support Persons. The approach, if found to be effective, has potential to improve psychosocial outcomes for haematological and other cancer patients, reduce the complexity and burden of meeting patients' psychosocial needs for health care providers with high potential for translation into clinical practice., Trial Registration: ACTRN12612000720819.

Background: In order to provide smoking cessation support to their patients in line with clinical practice guidelines, general practitioners must first ascertain whether their patients' use tobacco. This study examined (i) the sensitivity, specificity, positive predictive value and negative predictive value of general practitioner detection of smoking, and (ii) the general practitioner and patient characteristics associated with detection of tobacco use., Methods: Eligible patients completed a touchscreen computer survey while waiting for an appointment with their general practitioner. Patients self-reported demographic characteristics, medical history, and current smoking status. Following the patient's consultation, their general practitioner was asked to indicate whether the patient was a current smoker (yes/no/unsure/not applicable). Smoking prevalence, sensitivity, specificity, positive predictive value and negative predictive values (with 95% confidence intervals) were calculated using patient self-report of smoking status as the gold standard. Generalised estimating equations were used to examine the general practitioner and patient characteristics associated with detection of tobacco use., Results: Fifty-one general practitioners and 1,573 patients in twelve general practices participated. Patient self-report of smoking was 11.3% compared to general practitioner estimated prevalence of 9.5%. Sensitivity of general practitioner assessment was 66% [95% CI 59-73] while specificity was 98% [95% CI 97-98]. Positive predictive value was 78% [95% CI 71-85] and negative predictive value was 96% [95% CI 95-97]. No general practitioner factors were associated with detection of smoking. Patients with a higher level of education or who responded 'Other' were less likely to be detected as smokers than patients who had completed a high school or below level of education., Conclusion: Despite the important role general practitioners play in providing smoking cessation advice and support, a substantial proportion of general practitioners do not know their patient's smoking status. This represents a significant missed opportunity in the provision of preventive healthcare. Electronic waiting room assessments may assist general practitioners in improving the identification of smokers.

Research priority setting aims to gain consensus about areas where research effort will have wide benefits to society. While general principles for setting health research priorities have been suggested, there has been no critical review of the different approaches used. This review aims to: (i) examine methods, models and frameworks used to set health research priorities; (ii) identify barriers and facilitators to priority setting processes; and (iii) determine the outcomes of priority setting processes in relation to their objectives and impact on policy and practice. Medline, Cochrane, and PsycINFO databases were searched for relevant peer-reviewed studies published from 1990 to March 2012. A review of grey literature was also conducted. Priority setting exercises that aimed to develop population health and health services research priorities conducted in Australia, New Zealand, North America, Europe and the UK were included. Two authors extracted data from identified studies. Eleven diverse priority setting exercises across a range of health areas were identified. Strategies including calls for submission, stakeholder surveys, questionnaires, interviews, workshops, focus groups, roundtables, the Nominal Group and Delphi technique were used to generate research priorities. Nine priority setting exercises used a core steering or advisory group to oversee and supervise the priority setting process. None of the models conducted a systematic assessment of the outcomes of the priority setting processes, or assessed the impact of the generated priorities on policy or practice. A number of barriers and facilitators to undertaking research priority setting were identified. The methods used to undertake research priority setting should be selected based upon the context of the priority setting process and time and resource constraints. Ideally, priority setting should be overseen by a multi-disciplinary advisory group, involve a broad representation of stakeholders, utilise objective and clearly defined criteria for generating priorities, and be evaluated.

Background: Relevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors., Methods: The relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18-80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability., Results: Results from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach's alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains., Conclusions: The SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.

Background: Primary care providers are an important source of information regarding appropriate alcohol consumption. As early presentation to a provider for alcohol-related concerns is unlikely, it is important that providers are able to identify at-risk patients in order to provide appropriate advice. This study aimed to report the sensitivity, specificity, positive predictive value and negative predictive value of General Practitioner (GP) assessment of alcohol consumption compared to patient self-report, and explore characteristics associated with GP non-detection of at-risk status., Method: GP practices were selected from metropolitan and regional locations in Australia. Eligible patients were adults presenting for general practice care who were able to understand English and provide informed consent. Patients completed a modified AUDIT-C by touchscreen computer as part of an omnibus health survey while waiting for their appointment. GPs completed a checklist for each patient, including whether the patient met current Australian guidelines for at-risk alcohol consumption. Patient self-report and GP assessments were compared for each patient., Results: GPs completed the checklist for 1720 patients, yielding 1565 comparisons regarding alcohol consumption. The sensitivity of GPs' detection of at-risk alcohol consumption was 26.5%, with specificity of 96.1%. Higher patient education was associated with GP non-detection of at-risk status., Conclusions: GP awareness of which patients might benefit from advice regarding at-risk alcohol consumption appears low. Given the complexities associated with establishing whether alcohol consumption is 'at-risk', computer-based approaches to routine screening of patients are worthy of exploration as a method for prompting the provision of advice in primary care.

Background: Recruiting cancer patients is a barrier often encountered in research trials. However, very few randomized trials explore strategies to improve participation rates. The purpose of this study was to evaluate the effectiveness of a pre-recruitment primer letter to recruit persons diagnosed with colorectal cancer for a research trial., Methods: Potentially eligible participants were identified by the Victorian Cancer Registry. A total of 1,062 participants were randomized to receive either a mailed explanatory primer letter designed to encourage research participation, or no primer letter. Two weeks after the intervention, the Victorian Cancer Registry sought permission from patients to release their contact details to researchers. Those who agreed were contacted and invited to the study., Results: Pre-recruitment encouragement was not effective at increasing recruitment, with no significant differences demonstrated between experimental groups. Overall, 40% (n = 425) consented to participate, 25% (n = 243) refused and 35% (n = 394) did not respond., Conclusions: While this study demonstrated disappointing outcomes, pre-recruitment letters should not be ruled out as an approach altogether. Rather, future research should explore whether other factors to increase motivation, such as intensity and timing, are feasible and acceptable for contacting cancer patients., Trial Registration: Australian and New Zealand Clinical Trials Registry, ACTRN12609000628246.

Background: There is increasing recognition of gaps between best scientific evidence and clinical practice. This systematic review aimed to assess the volume and scope of peer-reviewed cancer research output in the years 2000, 2005, and 2010., Methods: Eligible papers were published in English and reported on evidence-practice gaps in cancer care. The electronic database Medline was searched for three time periods using MeSH headings and keywords. Abstracts were assessed against eligibility criteria by one reviewer and checked by a second. Papers meeting eligibility criteria were coded as data-based or non-data-based, and by cancer type of focus. All data-based papers were then further classified as descriptive studies documenting the extent of, or barriers to addressing, the evidence-practice gap; or intervention studies examining the effectiveness of strategies to reduce the evidence-practice gap., Results: A total of 176 eligible papers were identified. The number of publications significantly increased over time, from 25 in 2000 to 100 in 2010 (p < 0.001). Of the 176 identified papers, 160 were data-based. The majority of these (n = 150) reported descriptive studies. Only 10 studies examined the effectiveness of interventions designed to reduce discrepancies between evidence and clinical practice. Of these, only one was a randomized controlled trial. Of all data-based studies, almost one-third (n = 48) examined breast cancer care., Conclusions: While the number of publications investigating evidence-practice gaps in cancer care increased over a ten-year period, most studies continued to describe gaps between best evidence and clinical practice, rather than rigorously testing interventions to reduce the gap.

Background: In 2002/03 the Queensland Government responded to high rates of alcohol-related harm in discrete Indigenous communities by implementing alcohol management plans (AMPs), designed to include supply and harm reduction and treatment measures. Tighter alcohol supply and carriage restrictions followed in 2008 following indications of reductions in violence and injury. Despite the plans being in place for over a decade, no comprehensive independent review has assessed to what level the designed aims were achieved and what effect the plans have had on Indigenous community residents and service providers. This study will describe the long-term impacts on important health, economic and social outcomes of Queensland's AMPs., Methods/design: The project has two main studies, 1) outcome evaluation using de-identified epidemiological data on injury, violence and other health and social indicators for across Queensland, including de-identified databases compiled from relevant routinely-available administrative data sets, and 2) a process evaluation to map the nature, timing and content of intervention components targeting alcohol. Process evaluation will also be used to assess the fidelity with which the designed intervention components have been implemented, their uptake and community responses to them and their perceived impacts on alcohol supply and consumption, injury, violence and community health. Interviews and focus groups with Indigenous residents and service providers will be used. The study will be conducted in all 24 of Queensland's Indigenous communities affected by alcohol management plans., Discussion: This evaluation will report on the impacts of the original aims for AMPs, what impact they have had on Indigenous residents and service providers. A central outcome will be the establishment of relevant databases describing the parameters of the changes seen. This will permit comprehensive and rigorous surveillance systems to be put in place and provided to communities empowering them with the best credible evidence to judge future policy and program requirements for themselves. The project will inform impending alcohol policy and program adjustments in Queensland and other Australian jurisdictions.The project has been approved by the James Cook University Human Research Ethics Committee (approval number H4967 & H5241).

Background: Despite controversy about the benefits of routine prostate specific antigen (PSA) testing, rates of participation continue to rise. It is important to ensure that men are fully informed about the potential risks associated with this test. Little is known about the processes of shared decision making for PSA testing in the family practice setting. This study aimed to explore men's experiences of PSA testing participation and risk disclosure for PSA testing., Methods: A cross-sectional survey of male family practice attendees aged 40 years or older, with no previous history of prostate cancer, between June 2010 and November 2011. Questions related to whether participants had undertaken PSA testing or discussed this with their doctor over the past 5 years, whether the patient or doctor had initiated the discussion, reasons for undergoing testing, and whether their doctor had discussed particular risks associated with PSA testing., Results: Sixty-seven percent (215/320) of men recalled having a PSA test in the past five years. Of the respondents who reported not having a test, 14% had discussed it with their doctor. The main reasons for having a PSA test were doctor recommendation and wanting to keep up to date with health tests. Thirty-eight percent or fewer respondents reported being advised of each potential risk., Conclusions: Despite debate over the benefits of routine PSA testing, a high proportion of male family practice attendees report undertaking this test. Risks associated with testing appear to be poorly disclosed by general practitioners. These results suggest the need to improve the quality of informed consent for PSA testing in the family practice setting.

Background: Smoking during pregnancy is harmful to the unborn child. Few smoking cessation interventions have been successfully incorporated into standard antenatal care. The main aim of this study is to determine the feasibility of a personal financial incentive scheme for encouraging smoking cessation among pregnant women., Design: A pilot randomised control trial will be conducted to assess the feasibility and potential effectiveness of two varying financial incentives that increase incrementally in magnitude ($20 vs. $40AUD), compared to no incentive in reducing smoking in pregnant women attending an Australian public hospital antenatal clinic., Method: Ninety (90) pregnant women who self-report smoking in the last 7 days and whose smoking status is biochemically verified, will be block randomised into one of three groups: a. No incentive control group (n=30), b. $20 incremental incentive group (n=30), and c. $40 incremental incentive group (n=30). Smoking status will be assessed via a self-report computer based survey in nine study sessions with saliva cotinine analysis used as biochemical validation. Women in the two incentive groups will be eligible to receive a cash reward at each of eight measurement points during pregnancy if 7-day smoking cessation is achieved. Cash rewards will increase incrementally for each period of smoking abstinence., Discussion: Identifying strategies that are effective in reducing the number of women smoking during pregnancy and are easily adopted into standard antenatal practice is of utmost importance. A personal financial incentive scheme is a potential antenatal smoking cessation strategy that warrants further investigation., Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR) number: ACTRN12612000399897.

Background: The diagnosis and treatment of cancer is associated with significant distress and psychosocial morbidity. Although psychosocial interventions have been developed in an attempt to improve psychosocial outcomes in cancer patients and survivors, there is continued debate about whether there is adequate high-level evidence to establish the effectiveness of these interventions. The evidence base is limited as a result of numerous challenges faced by those attempting to conduct psychosocial intervention trials within the health system. Barriers include insufficient participant recruitment, difficulty generalizing from single-trial studies, difficulty in building and managing research teams with multidisciplinary expertise, lack of research design expertise and a lack of incentives for researchers conducting intervention research. To strengthen the evidence base, more intervention studies employing methodologically rigorous research designs are necessary., Methods: In order to advance the evidence base of interventions designed to improve psychosocial outcomes for cancer patients and survivors, we propose the formation of a collaborative trials group that conducts multicenter trials to test the effectiveness of such interventions., Results: Establishment of such a group would improve the quality of the evidence base in psychosocial research in cancer patients, by increasing support for conducting intervention research and providing intervention research training opportunities. A multidisciplinary collaborative group conducting multicenter trials would have the capacity to overcome many of the barriers that currently exist., Conclusions: A stronger evidence base is necessary to identify effective psychosocial interventions for cancer patients. The proposed formation of a psycho-oncology collaborative trials group that conducts multicenter trials to test the effectiveness of psychosocial interventions would assist in achieving this outcome.

Background: Colorectal cancer (CRC) is among the leading causes of cancer-related morbidity and mortality worldwide. Despite clinical practice guidelines to guide surveillance care for those who have completed treatment for this disease as well as screening for first degree relatives of people with CRC, the level of uptake of these recommendations remains uncertain. If outcomes for both patients and their families are to be improved, it is important to establish systematic and cost-effective interventions to improve adherence to guideline recommendations for CRC surveillance and screening., Methods/design: A randomized controlled trial will be used to test the effectiveness of a print-based intervention to improve adherence to colonoscopy surveillance among people with CRC and adherence to CRC screening recommendations among their first degree relatives (FDRs). People diagnosed with CRC in the past 10 months will be recruited through a population-based cancer registry. Consenting participants will be asked if their first degree relatives might also be willing to participate in the trial. Information on family history of CRC will be obtained from patients at baseline. Patients and their families will be randomized to either minimal ethical care or the print-based intervention. The print-based intervention for FDRs will be tailored to the participant's level of risk of CRC as determined by the self-reported family history assessment. Follow up data on surveillance and screening participation will be collected from patients and their FDRs respectively at 12, 24 and 36 months' post recruitment. The primary analyses will relate to comparing levels of guideline adherence in usual care group versus print-based group in the patient sample and the FDR sample respectively., Discussion: Results of this study will provide contribute to the evidence base about effective strategies to a) improve adherence to surveillance recommendation for people with CRC; and b) improve adherence to screening recommendation for FDRs of people with CRC. The use of a population-based cancer registry to access the target population may have significant advantages in increasing the reach of the intervention., Trial Registration: This trial is registered with the Australian and New Zealand Clinical Trials Registry Registration Number (ACTRN): ACTRN12609000628246.