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Aims: To explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility., Design: An interpretative qualitative study., Methods: Semi-structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes., Results: The majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses - impacted by knowledge and lack of support; (2) Questioning decision making-underpinned by knowledge and confidence; and (3) Challenges in re-establishing identity - impacted by ongoing concerns., Conclusion: As dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making., Reporting Method: This research was guided by the Consolidated Criteria for Reporting Qualitative Research., (© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

In-depth understanding of dementia carer experience can assist clinicians by providing insight into dementia onset, symptoms and management, and help conceptualize and understand the pattern of dementia progress over time and what help is needed. We undertook a qualitative study to understand dementia carers experiences of providing care and reasons for admission to a residential aged care facility (RACF). Three themes were identified: (1) Challenges in the path to diagnosis and care, leading to delays accessing support; (2) Carer role impacted by living circumstances; and (3) Variation in decision support prior to admission to a RACF. Identifying dementia carer experiences, reinforces the need for more timely diagnosis, referral for support and interventions to promote better quality of life for a people living with dementia and their carer and to delay premature RACF placement., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Depression is common among people with dementia. Despite most people with dementia living in the community, there have been few investigations of self-reported depressive symptoms and suicidal ideation among community-dwelling people with dementia in Australia. This study aimed to explore the proportion of people with mild, moderate and severe levels of depressive symptoms, and suicidal ideation among a sample of people living with dementia in Australia. Correlates of reporting depressive symptoms were also explored., Methods: Adults diagnosed with dementia by a medical professional who were English speaking and community-dwelling were asked to complete a paper and pencil survey. Those who were unable to provide independent consent were excluded. Depression was assessed using the Geriatric Depression Scale -15, and suicidal ideation was assessed using two study-specific items. Multivariable analyses examined quality of life, unmet needs and sociodemographic factors associated with having a score of five or more on the Geriatric Depression Scale-15., Results: Ninety-four people participated in the study. Thirty-seven percent (n = 35) reported some level of depressive symptoms, with most of these (21%, n = 20) classified as having mild depressive symptoms. Five participants (5%) reported they had had thoughts of being better off dead or hurting themselves, while three (3%) reported having had a plan to end their life. For each additional unmet need, the odds of being depressed increased by 25%(P < 0.001). For each point increase in quality of life, the odds of being depressed decreased by 48% (P < 0.001)., Conclusions: The high proportion of people with dementia who report depressive symptoms suggests the need to routinely assess depressive symptoms among this group. There may also be benefits in assessing unmet needs and addressing these where possible as part of an approach to reducing depression among people living with dementia in the community., (© 2023 The Authors. Psychogeriatrics published by John Wiley & Sons Australia, Ltd on behalf of Japanese Psychogeriatric Society.)

Background: Future medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making., Aims: To explore from the perspective of carers of persons with dementia: (1) Participation in future medical and financial planning by the person they care for, including when planning was undertaken and the characteristics associated with having an advance care directive completed; (2) The type of healthcare providers who discussed advance care planning following diagnosis; and (3) Preferences for timing of discussions about advance care planning following diagnosis., Methods: Recruitment and data collection took place between July 2018 and June 2020. Carers of persons with dementia aged 18 years and older were mailed a survey. Participants completed questions regarding completion of various future planning documents by the person they support, including time of completion and who discussed advance care planning following diagnosis. Participants were presented with information about the benefits and consequences of early and late discussions of advance care planning and asked when discussions about advance care planning were best initiated., Results: 198 carers participated. Most participants were female (74%) and had been a carer for more than 2 years (82%). Most participants reported that the person with dementia they support had made a Will (97%) and appointed an Enduring Guardian (93%) and Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. No significant associations were found between characteristics of persons with dementia and completion of an advance care directive. Geriatricians (53%) and GPs (51%) most often discussed advance care planning following diagnosis. Most carers thought that discussions about advance care planning should occur in the first few weeks or months following diagnosis (32%), at the healthcare provider's discretion (31%), or at the time of diagnosis (25%)., Conclusions: More than half of persons with dementia do not have an advance care directive. There is variability in preferences for timing of discussions following dementia diagnosis., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Bryant et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

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).)

Objectives: Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia., Methods: This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers., Results: A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information., Conclusion: This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted., Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833 .

Introduction: Surgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery., Methods and Analysis: The two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use., Ethics and Dissemination: The trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation., Trial Registration Number: ACTRN12621001533886., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health-related research, policy-making, advocacy and service delivery in health and aged care., Methods: An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia., Results: Raising awareness of advance research planning requires multi-faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person-centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation., Conclusions: As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area., (© 2022 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.)

Objective: This study examined the perceptions of a sample of Australian people living with dementia regarding the person-centred care and support they received from health professionals and family., Methods: Community-dwelling people living with dementia were invited to complete a cross-sectional survey., Results: Seventy-one people participated in the study. More than 90% agreed that health professionals explain who they are, why they are seeing them and listen to what they have to say; 63% agreed that health professionals ask how they would like to be involved in decisions about treatment; 78% agreed health professionals mainly speak to them rather than anyone accompanying them; 76% reported their family 'support you to do tasks by yourself', and 36% indicated that family caregivers 'get frustrated with you'., Conclusions: Results suggest that people living with dementia have a positive perception of the care and support they receive. Improvements may be needed in how health professionals speak directly to the person living with dementia when exploring how they would like to be involved in treatment decisions. Family caregivers may benefit from education and support on how they can manage frustrations and assist the person they support to maintain their independence., (© 2022 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.)

Objectives: Ensuring that the Australian public has an accurate understanding of the characteristics of dementia may assist in improving timely detection of dementia. This cross-sectional questionnaire study aimed to examine community members' perceptions of the risk factors, symptoms and impacts of dementia., Methods: Participants were recruited from outpatient units at a major regional hospital and were aged at least 18 years, a patient or an accompanying support person, did not have a dementia diagnosis, had sufficient English knowledge and were well enough to complete a survey. Participants completed a web-based survey on a touchscreen computer including items exploring knowledge of dementia risk factors, symptoms and perceived impacts if they or a loved one had dementia. Counts and proportions were calculated and perceived impacts of dementia were compared for self versus loved one using a χ 2 test., Results: Of 353 eligible individuals approached, 208 consented and were included in the study. Between 30% and 61% (n = 62-127) of participants believed modifiable factors such as high alcohol consumption and high blood pressure were associated with increased risk of dementia. While a majority of participants (87-96%; n = 164-181) identified memory-related symptoms, less than one-third recognised behavioural symptoms. Participants were more likely to identify emotional and practical impacts compared to physical or social impacts as most difficult if they or a loved one had dementia., Conclusions: There remains a need for increased community education to address knowledge gaps regarding modifiable risk factors, behavioural symptoms and potential impacts of dementia on the individual diagnosed and their carers., (© 2022 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.)

Background: Active patient participation in preparation and recovery from colorectal cancer surgery can be facilitated by timely information and care and may improve patient wellbeing and reduce hospitalizations; Methods: We aimed to identify gaps in perioperative information and care by asking colorectal cancer surgical patients to retrospectively report on their perceptions of care via a cross-sectional survey; Results: Overall, 179 (64% consent rate) patients completed one of two 64-item surveys exploring their views of 'optimal care' or their experiences of 'actual care'. In total, 41 (64%) aspects of care were endorsed as optimal. Of these, almost three-quarters (73%) were received by most patients (80% or more). Gaps in care were identified from discrepancies in the endorsement of optimal versus actual survey items. Of the 41 items identified as representing 'optimal care', 11 items were received by fewer than 80% of patients, including the provision of information about the impact of surgical wait-times on cancer cure (69%); pre-habilitation behaviors to improve health (75%); the type of questions to ask the health care team (74%); impact of pain medications on bowel movements (73%); how to obtain medical supplies for self-care at home (67%); dietary or exercise advice after discharge (25-31%); and emotional advice after discharge (44%)., Conclusions: These gaps represent patient-centered priorities and targets for supportive interventions.

Purpose: To examine the effectiveness of self-directed, off-the-shelf information and communications technology (ICT)-based interventions in improving the quality of life, physical and psychosocial outcomes of community-dwelling stroke survivors and their support persons (SP)., Methods: Medline, EMBASE, CINAHL and Cochrane databases were searched (2006-19th June 2020) for randomized controlled trials, controlled trials, controlled before and after studies, or interrupted time series studies that met the eligibility criteria. The quality of included studies was assessed. Interventions effectiveness was narratively synthesized, as was participant adherence and acceptability., Results: Seventeen studies were eligible. Three studies were rated as low risk of bias across all methodological review criteria. Nine studies reported on interventions delivered using self-directed computer programs, two studies utilized internet or web-based support programs and six studies used mobile phone interventions. Few studies reported on intervention acceptability or adherence. Those that did generally reported good acceptability, although adherence was variable. Fifteen studies reported significant positive effects for at least one outcome examined including stroke-specific outcomes, physical outcomes, behavioural outcomes and health service use. No studies found an effect for psychosocial wellbeing., Conclusion: ICT-based interventions are likely to provide benefit to stroke survivors and their SPs. However, there is a need for further robustly designed intervention studies that include larger sample sizes, longer follow-up, and outcomes for SPs.Implications for RehabilitationICT-based interventions with minimal clinician supervision are likely to provide some benefits to stroke survivors and their SPs.There is insufficient evidence to allow recommendations to rehabilitation professionals regarding the type, length and intensity of ICT-based interventions for specific targeted outcomes.Rehabilitation professionals should use professional judgement prior to recommending ICT-based interventions to stroke survivors and their SPs.

Background: Older adults represent the largest consumers of health care. It is, therefore, important that they receive adequate patient-centered care to empower them to be proactive in managing their health., Aims: This study examined the proportion of older community-dwelling individuals who report receiving patient-centered care during healthcare consultations., Methods: A cross-sectional study was conducted with 117 clients of an Australian aged care provider. Clients completed a survey examining their perceptions of whether they received patient-centered care (11-items) from healthcare professionals., Results: The mean number of patient-centered care items reported was 8.7 (±3.1). Speaking to the patient with respect was the item most often reported to be patient-centered (94%). Asking patients about treatment goals or expectations (62%) and how involved they would like to be in treatment (67%) were the items least reported to be patient-centered., Conclusion: Older adults perceived some important aspects of care were not provided with a patient-centered approach. There is a need to improve healthcare providers' elicitation of older patients' care preferences, enabling patients to determine their level of involvement in their health management., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Hobden, Mansfield, Freund, Clapham and Sanson-Fisher.)

Objectives: Australian guidelines for dementia cover 109 recommendations for dementia care. Knowing which recommendations to implement poses a challenge for general practitioners (GPs). This study aimed to gather general practice perspectives of priority recommendations for GPs in their practice., Methods: To explore which recommendations are most important and those requiring the greatest support in GP implementation, a Delphi study was conducted. Thirty-six GPs, 4 practice nurses and 1 medical services director completed two rounds of email questionnaires., Results: Recommendations requiring support for GP implementation relate to early assessment of behavioural and psychological symptoms; mental health interventions tailored to the person's preferences and abilities; language and cultural barriers in access to information and services; and cognitive and learning needs in treatment delivery., Conclusions: It is critical to understand where support may be needed for GPs to successfully implement recommendations to improve care provided to people with dementia and their carers., (© 2021 AJA Inc.)

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: Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home., Objective: We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population., Methods: This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability., Results: The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1-9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%)., Conclusion: The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

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.

Advance research directives (ARDs) enable people to document preferences for future research participation in the event of incapacity. This article reports on interviews with 11 dementia researchers in Australia that focused on the content of a prototype ARD and processes for making and using ARDs. Participants agreed that an ARD template should provide information to explain research and the rationale for making a directive, allow the person to nominate trusted individuals to be involved in future decisions, and record the person's general willingness or unwillingness to be involved in research. Providing a list of various research activities elicits preferences and risk tolerances in more detail. Priority groups for ARD implementation include people with a diagnosis involving progressive cognitive impairment and people interested in research. Researchers and health and legal professionals have a role in promoting ARDs. Our findings suggest that, as a voluntary strategy, ARDs could promote appropriate inclusion in research., (© 2021 by The Hastings Center. All rights reserved.)

Objective: To examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory., Methods: Breast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles., Results: Overall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome., Conclusion: Psychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions., Practice Implications: There is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Individuals with a previous cancer diagnosis are at risk of cancer recurrence. However, many cancer survivors do not adhere to lifestyle recommendations to reduce cancer risk. Little is known about the extent to which cancer patients are asked about lifestyle risk factors by healthcare providers following diagnosis. The aim of this study is to determine among Australian cancer survivors the (1) proportion asked about smoking, alcohol consumption, nutrition and physical activity; (2) total number of lifestyle risk factors asked about; and (3) factors associated with being asked about fewer risk factors. A cross-sectional survey was conducted with cancer patients attending outpatient clinics. Eligible patients completed a baseline survey and a second survey 4 weeks later. Data about demographic and disease characteristics, and whether participants had been asked about smoking, alcohol, physical activity and diet since being diagnosed with cancer, was collected. A total of 144 patients were included in the analyses. Following diagnosis, most had been asked about smoking (86%), alcohol consumption (85%), physical activity (80%) and diet (69%) by a healthcare provider. Sixty-one percent of participants reported being asked about all four risk factors; only 6% recalled being asked about none. After controlling for age, participants with a high school or lower education were more likely to be asked about fewer risk factors (OR 2.16; 95%CI 1.0 to 4.6; p = 0.04) compared with those with a trade, vocational or university-level education. Just over one-third of a sample of Australian cancer patients were not asked about all assessed lifestyle risk factors following their diagnosis of cancer. These findings suggest there is scope to improve identification of lifestyle risk factors among cancer survivors.

Background: Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs., Methods: Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis., Results: Participants had a mean age of 57 years (SD 13). Most were male (n = 10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements., Conclusions: To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n= 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57-80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning., (© The Author(s) 2020. Published by Oxford University Press; All rights reserved. For permissions, please email: journals.permissions@oup.com.)

People with dementia are under-represented in clinical research, in part due to the ethical and legal complexities of involving people in studies who may lack capacity to consent. Excluding this population from research limits the evidence to inform care. The attitudes and practices of researchers are key to the inclusion of people with dementia in research, however, there are few empirical studies on researchers' perspectives in this area. A cross-sectional study involved researchers in Australia who had experience in the ethical aspects of conducting dementia-related studies with human participants (n = 70). Data were collected via an online survey from November 2017 to January 2018. Most respondents (97%) agreed with the importance of including people at all stages of dementia in research, yet around three-quarters of respondents perceived ethical and legal rules and processes as unduly restrictive or time-consuming. Researchers reported variable practices in assessing prospective participants' capacity to consent to their studies. Various tools are used for this purpose, ranging from tools designed for research (eg, MacArthur Competence Assessment Tool for Clinical Research) to more general cognitive function screens (eg, Mini Mental State Exam). Few respondents (14%) routinely exclude people from studies who are unable to give their own consent, but instead seek permission from proxy decision-makers, such as legally appointed guardians or family carers. Respondents reported positive and negative outcomes of ethics review processes. Positive outcomes included strengthening the protections for participants with cognitive impairment while negative outcomes included delays and inconsistent decisions from different ethics committees. The findings suggest a need for improved strategies in the research context to assess and enhance the decision-making capacity of people with dementia to support appropriate opportunities for inclusion. Education for ethics committees, proxy decision-makers and other gatekeepers is also needed to reduce barriers to participation in research., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

This study aimed to examine the prevalence and perceived barriers to uptake of advance care planning (ACP), including appointment of an enduring guardian (EG) and completion of an advance care directive (ACD) among Australian adults attending hospital outpatient clinics. Sociodemographic correlates of not completing ACP were also assessed. A cross-sectional survey exploring the uptake of ACP was conducted with outpatients and their accompanying persons aged >18 years (n =191) at one regional hospital in New South Wales, Australia. Rates of completion of an ACD and appointment of an EG were 20% (n =37) and 35% (n =67) respectively. The most common reason for non-completion of an ACD and not appointing an EG was: 'didn't think I needed this'. Younger age was associated with not having appointed an EG (OR 3.8, 95% CI 1.2-12.1, P =0.02). No sociodemographic characteristics were significantly associated with non-completion of ACDs. Uptake of ACP is suboptimal among outpatients. Community-based healthcare providers are well positioned to promote ACP with outpatients.

Background and Objectives: Primary care physicians (PCPs) have a key role in providing care for people with dementia and their carers, however, a range of barriers prevent them from delivering optimal care. We reviewed studies on PCPs' perceptions of barriers to providing optimal dementia care, including their methodological quality, whether they focused on barriers related to diagnosis and/or management, and the patient-, provider-, and system-level barriers identified., Research Design and Methods: Studies were included if they were quantitative studies published since 2006 which reported on PCPs' perceptions of the barriers to providing dementia care. The methodological quality of identified studies was assessed using an adapted version of accepted rating criteria for quantitative studies. Data were extracted from studies which were rated as "moderate" or "strong" quality., Results: A total of 20 studies were identified, 16 of which were rated as "moderate" or "strong" methodological quality. Patient-related barriers included a reluctance to acknowledge cognitive decline and patient nonadherence to management plans. Provider-related barriers included a lack of training and confidence. System-related barriers included a lack of time during consultations and lack of support services., Discussion and Implications: This review highlights a range of barriers to dementia diagnosis and management from studies rated as being methodologically adequate. Future studies should also utilize theory-driven approaches to exploring a comprehensive range of barriers to optimal dementia care across the care trajectory., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: Uptake of screening through the Australian National Bowel Cancer Screening Program remains low. General practice guidelines support the general practitioners' role to offer CRC screening. This study tests the effect that an intervention including point-of-care FOBT provision, printed screening advice and GP endorsement has on self-reported FOBT uptake., Methods: A multisite, 1:1 parallel-arm, cluster-randomised controlled trial. Participants aged 50-74, at average risk of CRC and overdue for screening were recruited from four general practices in New South Wales, Australia, from September 2016 to May 2017. Self-report of FOBT up to eight weeks post baseline., Results: A total of 336 participants consented to complete a baseline survey (64% consent rate), of which 123 were recruited into the trial (28 usual care days and 26 intervention days). Follow-up data was collected for 114 participants (65 usual care and 49 intervention). Those receiving the intervention had ten times greater odds of completing screening compared to usual care (39% vs. 6%; OR 10.24; 95%CI 2.9-36.6, p=0.0006)., Conclusions: A multicomponent intervention delivered in general practice significantly increased self-reported FOBT uptake in those at average risk of CRC. Implications for public health: General practice interventions could serve as an important adjunct to the Australian National Bowel Cancer Screening Program to boost plateauing screening rates., (© 2019 The Authors.)

People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older (n=174) attending hospital outpatient clinics about clinical research participation if they had dementia and impaired decision-making ability. Over 90 percent of respondents were agreeable to participating in a wide range of research activities, such as cognitive testing, physical measurements, imaging procedures, and blood draws. For drug studies, however, agreement dropped to 60 percent. Altruism was a strong motivator for research participation. In regard to who should be involved in decisions about their participation in research during periods of incapacity, respondents mostly preferred the person they appoint as their substitute decision-maker for healthcare matters (88%) or a doctor or health professional on the research team (78%). Over three-quarters (79%) expressed interest in making an advance research directive. The study findings are discussed in relation to law reforms in Australia that aim to strengthen respect and inclusion for people with impaired decision-making capacity, especially by providing frameworks for advance planning for research participation.

Background and Aims: While cancer patients' preferences for their level of involvement in treatment decision making (TDM) vary, previous research indicates a large proportion of patients are not experiencing TDM that meets their preferences. Evidence is needed to identify the characteristics of cancer patients who are less likely to report experiencing their preferred level of involvement in TDM, so that appropriate decision-making support can be provided to them. We examined in a sample of medical oncology outpatients (1) the level of agreement between preferred and perceived involvement in TDM and (2) demographic, psychological, disease, and treatment characteristics associated with having unmet preferences for involvement in TDM., Methods and Results: Cancer patients from three medical oncology treatment centers in Australia completed surveys assessing demographic, disease and treatment variables, psychological distress, and preferred and perceived involvement in TDM. Data were collected between February 2013 and December 2014. Factors associated with having unmet TDM preferences were examined using logistic regression. There were 355 patients included in the analysis (75% response rate). The mean age (±SD) of the participants was 61 (±12), and 45% were male. Overall, 60% of participants reported that their preferences for involvement in TDM were met. No demographic, psychological, disease, or treatment characteristics were significantly associated with an increased probability of not having TDM preferences met., Conclusions: In line with previous research, a large proportion (40%) of patients reported TDM experiences that were not in alignment with their preferences. Future research should explore additional characteristics that are associated with a lower likelihood of having TDM preferences met.

Objective: To explore adult medical oncology outpatients' understanding of and preferences for the format of health risk information., Methods: Two surveys, one assessing sociodemographic characteristics and a second survey examining perceptions of risk information., Results: Of the 361 (74%) consenting patients, 210 completed at least one question on risk communication. 17% to 65% of patients understood numeric risk information, depending on the format of the information. More than 50% of people interpreted a "very good" chance of remission as greater than 80%, greater than 90% or 100%. The most preferred format of information was in both words and numbers (38% to 43%) followed by words alone (28% to 30%)., Conclusion: Numeric risk information is understood by 17% to 65% of respondents, depending on the format. Interpretation of verbal risk information is highly variable, posing a risk of misunderstanding. Provision of information in both words and numbers may assist in aiding comprehension., Competing Interests: The authors have declared that no competing interests exist.

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: To examine among people attending outpatient clinics aged 50-74 at average risk of colorectal cancer (CRC): 1) The proportion who report: a) faecal occult blood test (FOBT) within the past two years; and b) colonoscopy within the past five years, including the reasons for undergoing colonoscopy; 2) characteristics associated with under-screening; 3) For those who are under-screened, the proportion who are: a) willing to receive help and the acceptability of different methods of receiving help, and; b) unwilling to receive help and reasons for this., Methods: Cross-sectional survey of 197 participants attending a major regional hospital in New South Wales, Australia. Multivariable logistic regression was used to determine correlates of under-screening., Results: A total of 59% reported either FOBT in the past two years or colonoscopy in the past five years. Of those reporting colonoscopy in the past five years, 21% were potentially over-screened. Males were more likely than females to be under-screened. Of those under-screened (41%), fewer than half were willing to receive screening advice. Conclusions and implications for public health: A significant proportion of people attending outpatient clinics are under-screened for CRC, with some people also over-screened. There is a need to explore strategies to overcome both under- and over-screening., (© 2018 The Authors.)

Globally, colorectal cancer (CRC) screening rates remain suboptimal. Primary care practitioners are supported by clinical practice guidelines which recommend they provide routine CRC screening advice. Published research can provide evidence to improve CRC screening in primary care, however this is dependent on the type and quality of evidence being produced. This review aimed to provide a snapshot of trends in the type and design quality of research reporting CRC screening among primary care patients across three time points: 1993-1995, 2003-2005 and 2013-2015. Four databases were searched using MeSH headings and keywords. Publications in peer-reviewed journals which reported primary data on CRC screening uptake among primary care patients were eligible for inclusion. Studies meeting eligibility criteria were coded as observational or intervention. Intervention studies were further coded to indicate whether or not they met Effective Practice and Organisation of Care (EPOC) study design criteria. A total of 102 publications were included. Of these, 65 reported intervention studies and 37 reported observational studies. The proportion of each study type did not change significantly over time. The majority of intervention studies met EPOC design criteria at each time point. The majority of research in this field has focused on testing strategies to increase CRC screening in primary care patients, as compared to research describing rates of CRC screening in this population. Further research is needed to determine which effective interventions are most likely to be adopted into primary care.

Background: There are growing calls for elder abuse screening to be conducted by a range of community-based service providers, including general practitioners (GPs), practice nurses, home care workers and lawyers. Improved screening may be a valuable first step towards improving elder abuse detection and response; however, practitioners need evidence-based strategies for screening and follow-up., Objective: This article summarises several brief screening tools for various forms of elder abuse. Screening tool properties and evidence gaps are noted. As elder abuse often requires multidisciplinary responses, initiatives to connect health, legal and other service providers are highlighted., Discussion: GPs are trusted professionals who are well placed to identify older patients at risk of, or experiencing, various forms of abuse. They should be aware of available screening tools and consider how best to incorporate them into their own practice. They also play an important role in multidisciplinary action to address elder abuse.

Purpose: There is an increased focus on supporting patients with cancer to actively participate in their healthcare, an approach commonly termed 'self-management'. Comparing unmet self-management needs across cancer types may reveal opportunities to adapt effective self-management support strategies from one cancer type to another. Given that breast and colorectal cancers are prevalent, and have high survival rates, we compared these patients' recent need for help with self-management., Method: Data on multiple aspects of self-management were collected from 717 patients with breast cancer and 336 patients with colorectal cancer attending one of 13 Australian medical oncology treatment centres., Results: There was no significant difference between the proportion of patients with breast or colorectal cancer who reported a need for help with at least one aspect of self-management. Patients with breast cancer were significantly more likely to report needing help with exercising more, while patients with colorectal cancer were more likely to report needing help with reducing alcohol consumption. When controlling for treatment centre, patients who were younger, experiencing distress or had not received chemotherapy were more likely to report needing help with at least one aspect of self-management., Conclusions: A substantial minority of patients reported an unmet need for self-management support. This indicates that high-quality intervention research is needed to identify effective self-management support strategies, as well as implementation trials to identify approaches to translating these strategies into practice. Future research should continue to explore whether self-management support strategies could be adapted across cancer types.

Competing Interests: None declared

Objective: To explore: (1) how haematological cancer survivors and their support persons perceive the overall performance of the support person; (2) disagreement between survivor and support person ratings; and (3) characteristics associated with support persons rating their performance poorly., Methods: This is a substudy of a larger project of Australian haematological cancer survivors and their support persons. For this substudy, haematological cancer survivors were recruited from 4 Australian population-based cancer registries and asked to pass on a questionnaire package to their support persons. Survivors who passed on a questionnaire package to their support person were asked to answer questions about the support person and how they perceived the support person's performance. Similarly, support persons answered questions on their own performance as a support person., Results: A total of 924 haematological cancer survivors and 821 support persons were eligible for this study. Most survivors rated their support person as performing very well (84%) while less than half (48%) of support persons rated their own performance as very well. There was significant disagreement between survivor and their support person (dyad) ratings of the support person's performance. Support persons with above normal levels of depression (vs those with normal levels) had significantly higher odds of rating their own performance as "not well/somewhat well.", Conclusions: Health care providers should consider providing additional education and skills-based interventions to support persons who experience increased symptoms of depression., (Copyright © 2017 John Wiley & Sons, Ltd.)

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: Screening for colorectal cancer (CRC) significantly reduces mortality associated with this disease. In Australia, the National Bowel Cancer Screening Program provides regular fecal occult blood tests (FOBT) for those aged 50 to 74 years, however, participation rates in the program have plateaued at 36%. Given low uptake in the National Bowel Cancer Screening Program, it is necessary to explore alternate methods to increase CRC screening rates. Primary care is a promising adjunct setting to test methods to increase CRC screening participation. Primary care guidelines support the recommendation and provision of CRC screening to primary care patients. Those in the National Bowel Cancer Screening Program target age range frequently present to their primary care provider., Objective: This study tests the effect that a multicomponent primary care-based intervention has on CRC screening uptake when compared to usual care., Methods: Primary care patients presenting for an appointment with their primary care provider complete a touchscreen survey to determine eligibility for the trial. Those aged 50 to 74 years, at average risk of CRC, with no history of CRC or inflammatory bowel disease, who have not had an FOBT in the past 2 years or a colonoscopy in the past 5 years are eligible to participate in the trial. Trial participants are randomized to the intervention or usual care group by day of attendance at the practice. The intervention consists of provision of an FOBT, printed information sheet, and primary care provider endorsement to complete the FOBT. The usual care group receives no additional care., Results: The primary outcome is completion of CRC screening 6 weeks after recruitment. The proportion of patients completing CRC screening will be compared between trial groups using a logistic regression model., Conclusions: CRC screening rates in Australia are suboptimal and interventions to increase screening participation are urgently required. This protocol describes the process of implementing a multicomponent intervention designed to increase CRC screening uptake in a primary care setting., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616001299493; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371136&isReview=true (Archived by WebCite at http://www.webcitation.org/6pL0VYIj6). Universal Trial Number U1111-1185-6120., (©Natalie Dodd, Mariko Leanne Carey, Elise Mansfield, Christopher Oldmeadow. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.05.2017.)

Objective: The array of demanding tasks carried out by caregivers of people with dementia have significant negative impacts on their physical, mental and social well-being. Needs assessment allows individuals to indicate the extent to which their needs across different areas have or have not been met, allowing for estimations of the prevalence of needs and the extent to which help is required. This approach is extremely valuable in a clinical context, as it enables identification of the areas with which caregivers report a particular desire for help and allows targeting of support and resources to those who identify high levels of unmet needs. This systematic review aimed to critically examine the psychometric properties of measures that assess unmet needs of caregivers of people with dementia., Methods: Medline, Embase, PsycINFO and Cochrane electronic databases were searched between January 1990 and August 2015 for English-language publications describing the development or validation of measures assessing the unmet needs of adult caregivers of people with dementia. The psychometric properties of included measures were assessed against standard criteria for psychometric quality., Results: Four measures met the inclusion criteria. Only half of the indices of psychometric quality were tested across measures. Three measures had adequate internal consistency reliability, of which one also showed adequate test-retest reliability. Two measures reported adequate construct validity, while criterion validity was not assessed for any measure., Conclusions: There is a clear need to develop a psychometrically rigorous instrument to identify the unmet needs of caregivers of people with dementia. Copyright © 2016 John Wiley & Sons, Ltd., (Copyright © 2016 John Wiley & Sons, Ltd.)

Introduction: General practitioners have a key role in reducing cancer risk factors, screening for cancer and managing depression. Given the time-limited nature of consultations, a new and more time-efficient approach is needed which addresses multiple health needs simultaneously, and encourages patient self-management to address health risks. The aim of this cluster randomised controlled trial is to test the effectiveness of a patient feedback intervention in improving patient self-management of health needs related to smoking, risky alcohol consumption and underscreening for cancers at 1 month follow-up., Methods and Analysis: Adult general practice patients will be invited to participate in a baseline survey to assess cancer risk factors, screening needs and depression. A total of 360 participants identified by the baseline survey as having at least one health need (a self-reported cancer risk factor, underscreening for cancer, or an elevated depression score) will be randomised to an intervention or control group. Participants in the intervention group will receive tailored printed feedback summarising their identified health needs and recommended self-management actions to address these. All participants will be invited to complete a telephone interview 1 month following recruitment to assess self-management actions taken in relation to health needs identified in the baseline survey. Control group participants will receive tailored printed feedback on their identified health needs after their follow-up interview. A logistic regression model, with group allocation as the main predictor, will be used to assess the impact of the intervention on self-management actions., Ethical Considerations and Dissemination: Participants identified as being at risk of depression will be advised to speak with their doctor. Results will be disseminated via publication in peer-reviewed journals. The study has been approved by the University of Newcastle Human Research Ethics Committee., Trial Registration Number: ACTRN12616001443482., Competing Interests: Conflicts of Interest: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n = 25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed.

Caregivers of individuals with COPD have a key role in maintaining patient adherence and optimizing patient function. However, no systematic review has examined how the caregiver role has been operationalized in interventions to improve outcomes of individuals with COPD or the quality or effectiveness of these interventions. The aims of this review were to 1) determine whether caregivers have been involved as part of interventions to improve outcomes of individuals with COPD; 2) determine the risk of bias within included intervention studies; and 3) examine the effectiveness of interventions that have involved caregivers in improving outcomes of individuals with COPD. The electronic databases of Medline, Embase, PsycINFO, and Cochrane Library were searched from January 2000 to November 2015. Experimental studies testing interventions that involved a caregiver to improve COPD patient outcomes were eligible. Nine studies involving caregivers met inclusion criteria. No studies reported any intervention components targeted solely at caregivers, with most instead including caregivers in dyadic or group education sessions about COPD delivered by health care professionals. The risk of bias identified in included studies was mixed. Seven of the nine studies were effective in improving a broad range of outcomes. These findings highlight that there is an urgent need for methodologically rigorous interventions to examine the effectiveness of strategies to assist caregivers to provide direct care, encourage adherence to health care provider recommendations, act as a health care advocate, and provide emotional and psychosocial support to individuals with COPD.

This systematic review assessed the quantity and quality of research examining the psychosocial outcomes among hematological cancer patients. Studies were categorised as either measurement, descriptive or intervention. Intervention studies were further assessed according to Effective Practice and Organisation of Care (EPOC) methodological criteria. A total of 261 eligible papers were identified. The number of publications increased by 8.8% each year (95% CI=7.5-10.2%; p<0.0001). The majority of studies were descriptive (n=232; 89%), with few measurement (n=8; 3%) and intervention (n=21; 8%) studies identified. Ten intervention studies met EPOC design criteria, however only two interventions, one targeted at individuals with Hodgkin's or Non-Hodgkin's lymphoma and one targeted at individuals with leukaemia, lymphoma or myelomatosis were successful in improving patients' psychosocial outcomes. Despite an increasing volume of research examining psychosocial outcomes of hematological cancer patients, there is a need for robust measurement and methodologically rigorous intervention research in this area., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

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: Supporting people after bereavement is a priority area for many health services. Investment in bereavement care must be supported by a rigorous evidence-base., Aim: To examine the (1) relative proportion of descriptive, measurement and intervention research in grief counselling and (2) quality and effectiveness of intervention studies., Design: Systematic review of studies published in the area of grief counselling., Data Sources: MEDLINE, Embase, Cochrane Library and PsycINFO databases were searched for studies published between 2000 and 2013. Eligible papers were categorised into descriptive, measurement, review, commentaries and intervention studies. Intervention studies were assessed against the Cochrane Effective Practice and Organisation of Care methodological criteria, and papers meeting criteria were assessed for quality. The impact of interventions on grief, psychological morbidity and quality of life was examined., Results: A total of 126 data-based papers, including 47 descriptive, 3 measurement and 76 grief counselling intervention studies were included. Only 59% (n = 45) of intervention studies met Effective Practice and Organisation of Care design criteria. Overall, study quality was poor, with the majority of interventions showing a risk of bias in several key areas. The three studies that met all criteria showed mixed effectiveness., Conclusion: Grief counselling interventions require a strong rationale for design, and a systematic approach to development and evaluation. Descriptive research efforts should inform this process, focusing on homogeneity in sample, identification of risk factors for complicated grief and the impact of extraneous factors on intervention effects. Interventions should include comparisons to usual care, as well as replication to confirm positive findings., (© The Author(s) 2015.)

Background: Continued smoking following a cancer diagnosis has adverse impacts on cancer treatment and puts individuals at risk of secondary cancers. Data on the prevalence and correlates of smoking among cancer patients are critical for successfully targeting smoking cessation interventions., Aims: To explore among a sample of medical oncology outpatients (a) the prevalence of self-reported current smoking and (b) the demographic and psychosocial factors associated with self-reported smoking., Methods: A heterogeneous sample of cancer patients aged 18 years or over was recruited from 1 of 11 medical oncology treatment centres across Australia. Patients completed a survey assessing the following: smoking status; socio-demographic, disease and treatment characteristics; time since diagnosis; anxiety; and depression. Factors associated with self-reported smoking were examined using a univariate and multivariate mixed-effects logistic regression., Results: A total of 1379 patients returned surveys and 1338 were included in the analysis. The prevalence of current smoking was 10.9% (n = 146). After adjusting for treatment centre, patients aged 65 years and older and those without health concession cards were significantly less likely to smoke. Patients diagnosed with lung cancer and those without private health insurance were more likely to smoke., Discussion: A minority of cancer patients reported continued smoking at an average time of 13 months post-diagnosis. Patients, who are younger, have been diagnosed with lung cancer and have lower socioeconomic status are at-risk groups and represent important targets for smoking cessation advice and intervention. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)

Modifiable health risk behaviors such as smoking, overweight and obesity, risky alcohol consumption, physical inactivity, and poor nutrition contribute to a substantial proportion of the world's morbidity and mortality burden. General practitioners (GPs) play a key role in identifying and managing modifiable health risk behaviors. However, these are often underdetected and undermanaged in the primary care setting. We describe the potential of eHealth to help patients and GPs to overcome some of the barriers to managing health risk behaviors. In particular, we discuss (1) the role of eHealth in facilitating routine collection of patient-reported data on lifestyle risk factors, and (2) the role of eHealth in improving clinical management of identified risk factors through provision of tailored feedback, point-of-care reminders, tailored educational materials, and referral to online self-management programs. Strategies to harness the capacity of the eHealth medium, including the use of dynamic features and tailoring to help end users engage with, understand, and apply information need to be considered and maximized. Finally, the potential challenges in implementing eHealth solutions in the primary care setting are discussed. In conclusion, there is significant potential for innovative eHealth solutions to make a contribution to improving preventive care in the primary care setting. However, attention to issues such as data security and designing eHealth interfaces that maximize engagement from end users will be important to moving this field forward.

Cognitive control involves both proactive and reactive processes. Paradigms that rely on reactive control have shown that frontoparietal oscillatory synchronization in the theta frequency band is associated with interference control. This study examines whether proactive control is also associated with connectivity in the same frontoparietal theta network or involves a distinct neural signature. A task-switching paradigm was used to differentiate between proactive and reactive control processes, involved in preparing to switch or repeat a task and resolving post-target interference, respectively. We confirm that reactive control is associated with frontoparietal theta connectivity. Importantly, we show that proactive control is also associated with theta band oscillatory synchronization but in a different frontoparietal network. These findings support the existence of distinct proactive and reactive cognitive control processes that activate different theta frontoparietal oscillatory networks., (Copyright © 2015 Elsevier Inc. All rights reserved.)

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.