Factors associated with child and adolescent electronic nicotine and non-nicotine delivery systems use: A scoping review.

OBJECTIVES: To identify, characterise and broadly synthesise factors associated with child and adolescent electronic nicotine delivery systems (ENDS) and/or electronic non-nicotine delivery systems (ENNDS) ever-use and/or current use. METHODS: Four electronic databases were searched from inception to 3rd June 2022. Non-experimental studies that provided quantitative factors associated with adolescent and/or child ENDS or ENNDS ever-use and/or current use were included. Factors associated with ever-use (any lifetime use) and/or current use (use in past 30 days) were included. All screening and data extraction was conducted independently by paired review authors. Frequencies for country, study design, sample size, measure of ENDS/ENNDS use and factors examined were calculated. Factors were categorised according to the Theory of Triadic Influence domains and sub-domains. RESULTS: The search of electronic databases identified 4756 records, 240 of which were included. The majority of studies examined factors categorised within the Biology and Personality domain of the Theory of Triadic Influence (89.2%; 95%CI 84.6, 82.5), followed by the Social Context (50.8%; 95%CI 44.5, 57.2) and Broader Environment domains (30.4%; 95%CI 24.6, 36.3). The proportion of factors significantly associated with ENDS/ENNDS use was >75% for the Behavioural (78.0%; factors included use of tobacco, other drugs and alcohol), Peer Attitudes and Behaviours (80.0%; factors included peer use of ENDS/ENNDS and tobacco), and Legislation/Policy sub-domains (78.6%; factors included accessibility and advertising). CONCLUSIONS: The evidence base on factors associated with ENDS/ENNDS use in children and adolescents is rapidly developing, predominately by research concentrated in high income regions and focused on behavioural- and personality-related factors.

A rapid review of the scalability of interventions targeting obesity prevention in infants.

ISSUE ADDRESSED: Obesity in children is one of the most significant public health issues globally. Given the high prevalence of overweight and obesity in children, there is a need to identify effective obesity prevention efforts that can be delivered at scale to improve child health. We aimed to (i) identify obesity prevention interventions targeted at children aged 0-2 that have been scaled-up, and their relative efficacy compared to their pre-scale trial, (ii) describe adaptations made, and the extent to which factors related to scalability have been reported. METHODS: We conducted a rapid review of pre-scale randomised controlled trials targeting nutrition, physical activity and obesity prevention in infants, and calculated the relative effect size for relevant outcomes in the corresponding scaled up trial. We documented adaptations made to the pre-scale trial for scale up, and explored how different components of scalability had been reported according to the Intervention Scalability Assessment Tool. RESULTS: Of the 14 identified pre-scale trials, only one formal evaluation of the scale-up trial was identified. For body mass index, <10% of the effect was retained, however for nutrition and behavioural outcomes, the proportion of effect retained varied from -11.1% to 144%. Significant adaptations to modality were made in the scaled up trial primarily to reduce cost and increase reach of the intervention. Reporting of scalability components varied across the 14 trials, with only one trial reporting information for all assessed components. CONCLUSIONS: The majority of effective interventions targeting obesity prevention in infants have not been evaluated in a scaled up form. The magnitude of effect retained for the single trial that was scaled up was variable. In general, reporting of components of scalability was sub-optimal. SO WHAT?: The findings suggest that there is substantial need for the development and rigorous evaluation of obesity prevention interventions in children aged 0-2 which are amenable for scale.

Interventions to prevent or cease electronic cigarette use in children and adolescents.

BACKGROUND: The prevalence of e-cigarette use has increased globally amongst children and adolescents in recent years. In response to the increasing prevalence and emerging evidence about the potential harms of e-cigarettes in children and adolescents, leading public health organisations have called for approaches to address increasing e-cigarette use. Whilst evaluations of approaches to reduce uptake and use regularly appear in the literature, the collective long-term benefit of these is currently unclear. OBJECTIVES: The co-primary objectives of the review were to: (1) evaluate the effectiveness of interventions to prevent e-cigarette use in children and adolescents (aged 19 years and younger) with no prior use, relative to no intervention, waitlist control, usual practice, or an alternative intervention; and (2) evaluate the effectiveness of interventions to cease e-cigarette use in children and adolescents (aged 19 years and younger) reporting current use, relative to no intervention, waitlist control, usual practice, or an alternative intervention. Secondary objectives were to: (1) examine the effect of such interventions on child and adolescent use of other tobacco products (e.g. cigarettes, cigars types, and chewing tobacco); and (2) describe the unintended adverse effects of the intervention on individuals (e.g. physical or mental health of individuals), or on organisations (e.g. intervention displacement of key curricula or learning opportunities for school students) where such interventions are being implemented. SEARCH METHODS: We searched CENTRAL, Ovid MEDLINE, Ovid Embase, Ovid PsycINFO, EBSCO CINAHL, and Clarivate Web of Science Core Collection from inception to 1 May 2023. Additionally, we searched two trial registry platforms (WHO International Clinical Trials Registry Platform; US National Institutes of Health Ongoing Trials Register ClinicalTrials.gov), Google Scholar, and the reference lists of relevant systematic reviews. We contacted corresponding authors of articles identified as ongoing studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs), including cluster-RCTs, factorial RCTs, and stepped-wedge RCTs. To be eligible, the primary targets of the interventions must have been children and adolescents aged 19 years or younger. Interventions could have been conducted in any setting, including community, school, health services, or the home, and must have sought to influence children or adolescent (or both) e-cigarette use directly. Studies with a comparator of no intervention (i.e. control), waitlist control, usual practice, or an alternative intervention not targeting e-cigarette use were eligible. We included measures to assess the effectiveness of interventions to: prevent child and adolescent e-cigarette use (including measures of e-cigarette use amongst those who were never-users); and cease e-cigarette use (including measures of e-cigarette use amongst children and adolescents who were e-cigarette current-users). Measures of e-cigarette use included current-use (defined as use in the past 30 days) and ever-use (defined as any lifetime use). DATA COLLECTION AND ANALYSIS: Two review authors independently screened the titles and abstracts of references, with any discrepancies resolved through consensus. Pairs of review authors independently assessed the full-text articles for inclusion in the review. We planned for two review authors to independently extract information from the included studies and assess risk of bias using the Cochrane RoB 2 tool. We planned to conduct multiple meta-analyses using a random-effects model to align with the co-primary objectives of the review. First, we planned to pool interventions to prevent child and adolescent e-cigarette use and conduct two analyses using the outcome measures of 'ever-use' and 'current-use'. Second, we planned to pool interventions to cease child and adolescent e-cigarette use and conduct one analysis using the outcome measure of 'current-use'. Where data were unsuitable for pooling in meta-analyses, we planned to conduct a narrative synthesis using vote-counting approaches and to follow the Cochrane Handbook for Systematic Reviews of Interventions and the Synthesis Without Meta-analysis (SWiM) guidelines. MAIN RESULTS: The search of electronic databases identified 7141 citations, with a further 287 records identified from the search of trial registries and Google Scholar. Of the 110 studies (116 records) evaluated in full text, we considered 88 to be ineligible for inclusion for the following reasons: inappropriate outcome (27 studies); intervention (12 studies); study design (31 studies); and participants (18 studies). The remaining 22 studies (28 records) were identified as ongoing studies that may be eligible for inclusion in a future review update. We identified no studies with published data that were eligible for inclusion in the review. AUTHORS' CONCLUSIONS: We identified no RCTs that met the inclusion criteria for the review, and as such, there is no evidence available from RCTs to assess the potential impact of interventions targeting children and adolescent e-cigarette use, tobacco use, or any unintended adverse effects. Evidence from studies employing other trial designs (e.g. non-randomised) may exist; however, such studies were not eligible for inclusion in the review. Evidence from studies using non-randomised designs should be examined to guide actions to prevent or cease e-cigarette use. This is a living systematic review. We search for new evidence every month and update the review when we identify relevant new evidence. Please refer to the Cochrane Database of Systematic Reviews for the current status of this review.

An audit of the dissemination strategies and plan included in international food-based dietary guidelines.

OBJECTIVE: Food-based dietary guidelines (FBDG) are an important resource to improve population health; however, little is known about the types of strategies to disseminate them. This study sought to describe dissemination strategies and content of dissemination plans that were available for FBDG. DESIGN: A cross-sectional audit of FBDG with a published English-language version sourced from the United Nations FAO repository. We searched for publicly available dissemination strategies and any corresponding plans available in English language. Two authors extracted data on strategies, which were grouped according to the Model for Dissemination Research Framework (including source, audience, channel and message). For guidelines with a dissemination plan, we described goals, audience, strategies and expertise and resources according to the Canadian Institute for Health Research guidance. SETTING: FBDG from fifty-three countries mostly from high-income (n 28, 52·8 %), and upper-middle income (n 18, 34 %) areas were included. PARTICIPANTS: n/a. RESULTS: The source of guidelines was most frequently health departments (79·2 %). The message included quantities and types of foods, physical activity recommendations and 88·7 % included summarised versions of main messages. The most common channels were infographics and information booklets, and the main end-users were the public. For twelve countries (22·6 %), we were able to source an English-language dissemination plan, where none met all recommendations outlined by the Canadian Institute for Health Research. CONCLUSIONS: The public was the most frequently identified end-user and thus most dissemination strategies and plans focused on this group. Few FBDG had formal dissemination plans and of those there was limited detailed provided.

The impact of an e-newsletter or animated video to disseminate outdoor free-play information in relation to COVID-19 guidelines in New South Wales early childhood education and care services: a randomised controlled trial.

BACKGROUND: State-based Guidelines were issued for Early Childhood Education and Care (ECEC) services (caring for children 0-6 years) recommending greater time outdoors and inclusion of indoor-outdoor programs to facilitate social distancing to reduce spread of COVID-19. The aim of this 3-arm randomised controlled trial (RCT) was to examine the impact of different dissemination strategies on increasing ECEC service intentions to adopt recommendations from the Guidelines. METHODS: This was a post-intervention only RCT. A sample of eligible ECEC services in New South Wales (n = 1026) were randomly allocated to one of three groups; (i) e-newsletter resource; (ii) animated video resource; or (iii) control (standard email). The intervention was designed to address key determinants of guideline adoption including awareness and knowledge. Following delivery of the intervention in September 2021, services were invited to participate in an online or telephone survey from October-December 2021. The primary trial outcome was the proportion of services intending to adopt the Guidelines, defined as intention to; (i) offer an indoor-outdoor program for the full day; or (ii) offer more outdoor play time. Secondary outcomes included awareness, reach, knowledge and implementation of the Guidelines. Barriers to Guideline implementation, cost of the dissemination strategies and analytic data to measure fidelity of intervention delivery were also captured. RESULTS: Of the 154 services that provided post-intervention data, 58 received the e-newsletter (37.7%), 50 received the animated video (32.5%), and 46 received the control (29.9%). Services who received the animated video had nearly five times the odds (OR: 4.91 [1.03, 23.34] p = 0.046) than those in the control group, to report having intentions to adopt the Guidelines. There were no statistically significant differences in awareness or knowledge of the Guidelines between either intervention or control services. Development costs were greatest for the animated video. The extent to which the dissemination strategy was viewed in full, were similar for both the e-newsletter and animated video. CONCLUSION: This study found potential for the inclusion of interactive strategies to disseminate policy and guideline information within the ECEC setting, in the context of the need for rapid communication. Further research should explore the added benefits of embedding such strategies within a multi-strategy intervention. TRIAL REGISTRATION: Retrospectively registered with the Australian New Zealand Clinical Trials Registry (ANZCTR) on the 23/02/2023 (ACTRN 12,623,000,198,628).

Dissemination of public health research to prevent non-communicable diseases: a scoping review.

BACKGROUND: Dissemination is a critical element of the knowledge translation pathway, and a necessary step to ensure research evidence is adopted and implemented by key end users in order to improve health outcomes. However, evidence-based guidance to inform dissemination activities in research is limited. This scoping review aimed to identify and describe the scientific literature examining strategies to disseminate public health evidence related to the prevention of non-communicable diseases. METHODS: Medline, PsycInfo and EBSCO Search Ultimate were searched in May 2021 for studies published between January 2000 and the search date that reported on the dissemination of evidence to end users of public health evidence, within the context of the prevention of non-communicable diseases. Studies were synthesised according to the four components of Brownson and colleagues' Model for Dissemination of Research (source, message, channel and audience), as well as by study design. RESULTS: Of the 107 included studies, only 14% (n = 15) directly tested dissemination strategies using experimental designs. The remainder primarily reported on dissemination preferences of different populations, or outcomes such as awareness, knowledge and intentions to adopt following evidence dissemination. Evidence related to diet, physical activity and/or obesity prevention was the most disseminated topic. Researchers were the source of disseminated evidence in over half the studies, and study findings/knowledge summaries were more frequently disseminated as the message compared to guidelines or an evidence-based program/intervention. A broad range of dissemination channels were utilised, although peer-reviewed publications/conferences and presentations/workshops predominated. Practitioners were the most commonly reported target audience. CONCLUSIONS: There is a significant gap in the peer reviewed literature, with few experimental studies published that analyse and evaluate the effect of different sources, messages and target audiences on the determinants of uptake of public health evidence for prevention. Such studies are important as they can help inform and improve the effectiveness of current and future dissemination practices in public health contexts.

Attitudes towards and engagement in self-directed learning among paramedics in New South Wales, Australia: a cross sectional study.

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

The benefits of data sharing and ensuring open sources of systematic review data.

AIMS: The benefits of increasing public access to data from clinical trials are widely accepted. Such benefits extend to the sharing of data from high-quality systematic reviews, given the time and cost involved with undertaking reviews. We describe the application of open sources of review data, outline potential challenges and highlight efforts made to address these challenges, with the intent of encouraging publishers, funders and authors to consider sharing review data more broadly. RESULTS: We describe the application of systematic review data in: (i) advancing understanding of clinical trials and systematic review methods, (ii) repurposing of data to answer public health policy and practice relevant questions, (iii) identification of research gaps and (iv) accelerating the conduct of rapid reviews to inform decision making. While access, logistical, motivational and legal challenges exist, there has been progress made by systematic review, academic and funding agencies to incentivise data sharing and create infrastructure to support greater access to systematic review data. CONCLUSION: There is opportunity to maximize the benefits of research investment in undertaking systematic reviews by ensuring open sources of systematic review data. Efforts to create such systems should draw on learnings and principles outlined for sharing clinical trial data.

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

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

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

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

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

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

Discussions About Lifestyle Risk Factors Following a Cancer Diagnosis: Findings from a Sample of Australian Cancer Outpatients.

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.

Medical oncology outpatients' preferences and experiences with advanced care planning: a cross-sectional study.

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.

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

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

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

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

Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey.

PURPOSE: To explore the experiences of haematological cancer outpatients in obtaining information about their cancer and its treatment. METHODS: A cross-sectional survey of adult haematological cancer outpatients was conducted. Participants completed two pen-and-paper questionnaires: the first examined demographics and disease characteristics; the second, completed four weeks later, asked about the cancer information received. Participants indicated whether they received the information they needed about medical procedures and self-management, experiences regarding doctor-patient communication, and self-efficacy in seeking information and support. Where possible, items were derived from Australian psychosocial cancer care guidelines. RESULTS: Two hundred and ninety-three (84%) patients consented to participate, with 170 (58%) completing both questionnaires. Most participants reported receiving information in accordance with guidelines. Areas identified as requiring improvement included difficulty recalling information (28%); information overload (26%); insufficient opportunity to ask questions (23%); and insufficient information about managing anxiety related to medical procedures (20%). CONCLUSION: While many haematological cancer patients report receiving adequate information, there is room for improvement. Implementation of evidence-based strategies, such as decision aids or audiotapes of the consultation, may help to improve information experiences. PRACTICE IMPLICATIONS: A patient-centred approach to information provision is essential for ensuring information addresses the needs and preferences of the patient.

Preferences for models of peer support in the digital era: A cross-sectional survey of people with cancer.

OBJECTIVE: Many people with cancer report an unmet need for peer support, yet participation rates are low. This study examined cancer patients' preferences for participating in peer support, and the characteristics associated with having or wanting to participate in peer support. METHODS: Adult cancer patients were recruited from outpatient oncology clinics at 5 hospitals in Australia. Participants were invited to self-complete 2 questionnaires: one at recruitment assessing their demographic and cancer characteristics, and another 4 weeks later assessing their preferences for participating in cancer-related peer support. RESULTS: The peer support questionnaire was completed by 177/273 (65%) of participants. Most (59%, n = 104) had or wanted to participate in peer support. More than half reported that it was important the people they connected with had the same cancer treatment (56%, n = 99) or type of cancer (53%, n = 94) as themselves. Half had or wanted to participate in 1-to-1 peer support (52%, n = 92). Half had or wanted to connect with peers face-to-face (53%, n = 93). Only 13% (n = 23) were receptive to connecting with peers over the internet. Being aged ≤65 years was significantly associated (OR = 2.3; 95% CI: 1.1-5.1) with reporting a preference for participating in peer support. CONCLUSIONS: Cancer patients are interested in participating in peer support, particularly those who are younger. Despite the digital era, traditional forms of peer support continue to be important in supporting people with cancer. Greater understanding of the barriers to cancer patients' involvement in potentially low cost and high reach web-based models of peer support is required.

Optimal cancer care: what essential elements of care would help haematological cancer patients obtain and understand information about their disease and its treatment and impact?

PURPOSE: To describe the perceptions of haematological cancer patients about the components of care deemed essential to supporting them to obtain and understand information about their cancer, its treatment and its impact on their life. METHODS: A cross-sectional survey was conducted with individuals diagnosed with haematological cancer. Eligible patients presenting for a scheduled outpatient appointment were invited to complete a pen-and-paper survey in the clinic waiting room while waiting for their appointment. Those who completed the survey were mailed a second survey approximately 4 weeks later. Participants provided data about their demographic and disease characteristics and perceptions of optimal care for haematological cancer patients. RESULTS: A total of 170 patients completed both surveys and were included in the analysis. The items endorsed as essential components of care by the highest number of participants were being able to share accurate information about their disease, treatment and ongoing care with their GP/family doctor (49%); being able to obtain up-to-date information specific to their circumstances (43%); being able to obtain information in the amount of detail that they want (34%); being able to call a health care professional at the treatment centre where they are receiving care (34%) and being able to call an experienced health care professional who has knowledge of their disease and its treatment (34%). CONCLUSIONS: Further research is needed to determine ways of meeting the preferences of haematological cancer patients and determining the associated impact on patient outcomes.

Not asking cancer patients about their preferences does make a difference. A cross-sectional study examining cancer patients' preferred and perceived role in decision-making regarding their last important cancer treatment.

We examined whether not having been asked by their clinicians about how involved cancer patients would like to be in their treatment decisions is related to discordance between patients' preferred and perceived involvement in treatment decision-making. This was a cross-sectional survey of adult cancer patients recruited from five medical and radiation oncology outpatient clinics in Australia. Discordance of patients' preferred and perceived decision-making roles was assessed via an adapted version of the Control Preferences Scale. Logistic regression modelling was conducted to assess the relationship between role discordance and whether patients were not asked but wanted to be asked about how involved they would like to be in deciding on their treatment. Of 423 study participants, almost a third (n = 128, 31%) reported discordance between their preferred and perceived involvement in their treatment decisions. Of those reporting discordance, 72% (n = 92) were less involved than they would have liked to have been. Not being asked about their preferences for involvement in treatment decisions, despite wanting this, was associated with discordance between patients' preferred and perceived involvement in treatment decision-making (p < 0.04). To achieve patient-centred care, it is vital that clinicians seek patients' views about how involved they would like to be in deciding on their cancer treatment.

Assisting the bereaved: A systematic review of the evidence for grief counselling.

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.