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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: This study aimed to identify the most prevalent unmet needs of haematological cancer survivors. Methods: Haematological cancer survivors aged 18-80 years at time of recruitment were selected from four Australian state cancer registries. Survivors completed the Survivor Unmet Needs Survey. The most frequently reported "high/very high" unmet needs items were identiied, as well as characteristics associated with the three most prevalent "high/very high" unmet needs reported by haematological cancer survivors. Results: A total of 715 eligible survivors returned a completed survey. "Dealing with feeling tired" (17%), was the most frequently endorsed "high/very high" unmet need. Seven out of the ten most frequently endorsed unmet needs related to emotional health. Higher levels of psychological distress (e.g., anxiety, depression and stress) and indicators of inancial burden as a result of cancer (e.g., having used up savings and trouble meeting day-to-day expenses due to cancer) were consistently identiied as characteristics associated with the three most prevalent "high/very high" unmet needs. Conclusions: A minority of haematological cancer survivors endorsed a "high/very high" unmet need on individual items. Additional emotional support may be needed by a minority of survivors. Survivors reporting high levels of psychological distress or those who experience increased inancial burden as a result of their cancer diagnosis may be at risk of experiencing the most prevalent "high/very high" unmet needs identiied by this study. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: This study aimed to identify the most prevalent unmet needs of haematological cancer survivors. Methods: Haematological cancer survivors aged 18–80 years at time of recruitment were selected from four Australian state cancer registries. Survivors completed the Survivor Unmet Needs Survey. The most frequently reported “high/very high” unmet needs items were identified, as well as characteristics associated with the three most prevalent “high/very high” unmet needs reported by haematological cancer survivors. Results: A total of 715 eligible survivors returned a completed survey. “Dealing with feeling tired” (17%), was the most frequently endorsed “high/very high” unmet need. Seven out of the ten most frequently endorsed unmet needs related to emotional health. Higher levels of psychological distress (e.g., anxiety, depression and stress) and indicators of financial burden as a result of cancer (e.g., having used up savings and trouble meeting day-to-day expenses due to cancer) were consistently identified as characteristics associated with the three most prevalent “high/very high” unmet needs. Conclusions: A minority of haematological cancer survivors endorsed a “high/very high” unmet need on individual items. Additional emotional support may be needed by a minority of survivors. Survivors reporting high levels of psychological distress or those who experience increased financial burden as a result of their cancer diagnosis may be at risk of experiencing the most prevalent “high/very high” unmet needs identified by this study. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Well-designed trials of strategies to improve adherence to clinical practice guidelines are needed to close persistent evidence-practice gaps. We studied how the number of these trials is changing with time, and to what extent physicians are participating in such trials. Methods: This is a literature-based study of trends in evidence-practice gap publications over 10 years and participation of clinicians in intervention trials to narrow evidence-practice gaps. We chose nine evidence-based guidelines and identified relevant publications in the PubMed database from January 1998 to December 2007. We coded these publications by study type (intervention versus non-intervention studies). We further subdivided intervention studies into those for clinicians and those for patients. Data were analyzed to determine if observed trends were statistically significant. Results: We identified 1,151 publications that discussed evidence-practice gaps in nine topic areas. There were 169 intervention studies that were designed to improve adherence to well-established clinical guidelines, averaging 1.9 studies per year per topic area. Twenty-eight publications (34%; 95% CI: 24% - 45%) reported interventions intended for clinicians or health systems that met Effective Practice and Organization of Care (EPOC) criteria for adequate design. The median consent rate of physicians asked to participate in these well-designed studies was 60% (95% CI, 25% to 69%). Conclusions: We evaluated research publications for nine evidence-practice gaps, and identified small numbers of well-designed intervention trials and low rates of physician participation in these trials. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods: Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results: The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire. Conclusions: Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered. [ABSTRACT FROM AUTHOR]

Background: Adolescent and young adult (AYA) cancer survivors require psychometrically rigorous measures to assess their psychosocial well-being. Without methodologically adequate scales the accuracy of information obtained on the prevalence of needs, predictors of risk, and the potential success of any interventions, can be questioned. This review assessed the psychometric properties of measures designed specifically to identify the psychosocial health of this unique population. Methods: Medline, PsycINFO, CINAHL and EMBASE databases were searched to identify measures developed to assess the psychosocial health of AYA cancer survivors. Searches were limited to the years 1998-2008. A search of Medline revealed that the number of publications related to the assessment of psychosocial well-being in AYA cancer survivors prior to this period were minimal. The psychometric properties of identified measures were evaluated against pre-determined and generally accepted psychometric criteria including: reliability (internal consistency and test-retest); validity (face, content, construct, and criterion); responsiveness; acceptability; and feasibility. Results: Seven quality of life measures met the inclusion criteria. No measures of unmet need were identified. All seven measures reported adequate internal consistency, face, content, and construct validity. Test-retest reliability, criterion (predictive) validity, responsiveness, acceptability, and feasibility were rarely examined. Conclusions: There is a need to further evaluate the psychometric properties of existing quality of life measures for AYA cancer survivors. Valid, reliable, and acceptable measures which can assess the psychosocial needs of this population should also be developed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Emergency department staff play a crucial role in the triage of stroke patients and therefore the capacity to deliver time-dependent treatments such as tissue Plasminogen Activator. This study aimed to identify among emergency physicians, (1) rates of agreement with evidence supporting tissue Plasminogen Activator use in acute stroke care; and (2) individual and hospital factors associated with high agreement with evidence supporting tissue Plasminogen Activator use. Methods: Australian fellows and trainees of the Australasian College for Emergency Medicine were invited to complete an online cross-sectional survey assessing perceptions of tissue Plasminogen Activator use in acute stroke. Demographic and hospital characteristics were also collected. Results: 429 Australasian College for Emergency Medicine members responded (13% response rate). Almost half (47.2%) did not agree with any statements regarding the benefits of tissue Plasminogen Activator use for acute stroke. Perceived routine administration of tissue Plasminogen Activator by the head of respondents'emergency department was significantly associated with high agreement with the evidence supporting tissue Plasminogen Activator use in acute stroke. Conclusions: Agreement with evidence supporting tissue Plasminogen Activator use in acute stroke is not high among responding Australian emergency physicians. In order for tissue Plasminogen Activator treatment to become widely accepted and adopted in emergency settings, beliefs and attitudes towards treatment need to be in accordance with clinical practice guidelines. [ABSTRACT FROM AUTHOR]

Background To facilitate translation of evidence into clinical practice, it is critical that clear, specific, and detailed information about interventions is provided in publications to promote replication, appropriate aggregation in meta-analysis, and implementation. This study examined whether twenty elements of interventions deemed essential for such translational application were reported in sufficient detail in smoking cessation trials with pregnant women. Methods Searches of electronic databases using MeSH terms and keywords identified peer-reviewed English language studies published between 2001 and 2012. Eligible studies reported a smoking cessation intervention targeted at pregnant women and met Cochrane's Effective Practice and Organization of Care group study design criteria. Each intervention arm of eligible studies was assessed against the developed twenty criteria. Results Thirty relevant studies reported the findings of 45 intervention arms. The mode of delivery of the intervention was reported in 100% of intervention arms. Other well-reported criteria included reporting of the provider who delivered the intervention (96%), sample characteristics (80%), and the intervention setting (80%). Criteria not reported adequately included care provided to women who relapse (96% not reported), details about training given to providers (77% not reported), and the method of quit advice advised (76% not reported). No studies reported 100% of relevant criteria. Conclusions Current standards of reporting of intervention content and implementation are suboptimal. The use of smoking cessation specific checklists for reporting of trials, standard reporting using behaviour change taxonomies, and the publication of protocols as supplements should be considered as ways of improving the specificity of reporting. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 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. [ABSTRACT FROM AUTHOR]

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 indicators. 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 other Australian jurisdictions. The project has been approved by the James Cook University Human Research Ethics Committee (approval number H4967 & H5241). [ABSTRACT FROM AUTHOR]

Adherence to medication among individuals with chronic obstructive pulmonary disease (COPD) is suboptimal and has negative impacts on survival and health care costs. No systematic review has examined the effectiveness of interventions designed to improve medication adherence. Electronic databases Medline and Cochrane were searched using a combination of MeSH and keywords. Eligible studies were interventions with a primary or secondary aim to improve medication adherence among individuals with COPD published in English. Included studies were assessed for methodological quality using the Effective Practice and Organisation of Care (EPOC) criteria. Of the 1,186 papers identified, seven studies met inclusion criteria. Methodological quality of the studies was variable. Five studies identified effective interventions. Strategies included: brief counselling; monitoring and feedback about inhaler use through electronic medication delivery devices; and multi-component interventions consisting of self-management and care co-ordination delivered by pharmacists and primary care teams. Further research is needed to establish the most effective and cost effective interventions. Special attention should be given to increasing patient sample size and using a common measure of adherence to overcome methodological limitations. Interventions that involve caregivers and target the healthcare provider as well as the patient should be further explored. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.Methods: Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.Results: The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.Conclusions: The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: To facilitate translation of evidence into clinical practice, it is critical that clear, specific, and detailed information about interventions is provided in publications to promote replication, appropriate aggregation in meta-analysis, and implementation. This study examined whether twenty elements of interventions deemed essential for such translational application were reported in sufficient detail in smoking cessation trials with pregnant women.Methods: Searches of electronic databases using MeSH terms and keywords identified peer-reviewed English language studies published between 2001 and 2012. Eligible studies reported a smoking cessation intervention targeted at pregnant women and met Cochrane's Effective Practice and Organization of Care group study design criteria. Each intervention arm of eligible studies was assessed against the developed twenty criteria.Results: Thirty relevant studies reported the findings of 45 intervention arms. The mode of delivery of the intervention was reported in 100% of intervention arms. Other well-reported criteria included reporting of the provider who delivered the intervention (96%), sample characteristics (80%), and the intervention setting (80%). Criteria not reported adequately included care provided to women who relapse (96% not reported), details about training given to providers (77% not reported), and the method of quit advice advised (76% not reported). No studies reported 100% of relevant criteria.Conclusions: Current standards of reporting of intervention content and implementation are suboptimal. The use of smoking cessation specific checklists for reporting of trials, standard reporting using behaviour change taxonomies, and the publication of protocols as supplements should be considered as ways of improving the specificity of reporting. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

Adherence to medication among individuals with chronic obstructive pulmonary disease (COPD) is suboptimal and has negative impacts on survival and health care costs. No systematic review has examined the effectiveness of interventions designed to improve medication adherence. Electronic databases Medline and Cochrane were searched using a combination of MeSH and keywords. Eligible studies were interventions with a primary or secondary aim to improve medication adherence among individuals with COPD published in English. Included studies were assessed for methodological quality using the Effective Practice and Organisation of Care (EPOC) criteria. Of the 1,186 papers identified, seven studies met inclusion criteria. Methodological quality of the studies was variable. Five studies identified effective interventions. Strategies included: brief counselling; monitoring and feedback about inhaler use through electronic medication delivery devices; and multi-component interventions consisting of self-management and care co-ordination delivered by pharmacists and primary care teams. Further research is needed to establish the most effective and cost effective interventions. Special attention should be given to increasing patient sample size and using a common measure of adherence to overcome methodological limitations. Interventions that involve caregivers and target the healthcare provider as well as the patient should be further explored. [ABSTRACT FROM AUTHOR]