Building prevention research science communication and knowledge translation capacity through multidisciplinary collaboration.

OBJECTIVE: To document the outcomes of a dedicated Science Communication Community of Practice (CoP) for increasing prevention-focused knowledge translation (KT) and evidence uptake. Type of program: Shared priorities and a united vision to communicate the value of prevention research led to the formation of a dedicated Science Communication CoP within an Australian public health prevention-focused research collaboration. Members of the CoP included science communication experts and early- and mid-career researchers (EMCRs) with KT-focused roles. METHODS: The CoP met monthly, with semi-structured meetings led by an experienced science communication professional. A priority of the CoP was to develop resources that could help members and external parties to communicate their findings, especially EMCRs and those working on low-resourced projects. Insights from CoP members were synthesised to document if, and how, the CoP increased communication and KT capacity. RESULTS: CoP members found that participatory dialogue - dialogue that involves sharing perspectives and listening to others in order to develop a shared understanding - helped promote a greater understanding of science communication techniques and led to KT being embedded within projects. The CoP itself resulted in shared narratives and communication outputs that could not have been produced by individual members, primarily due to a lack of dedicated resourcing. Members found that engaging in the CoP increased their use of a range of science communication skills, tactics, and methods (e.g., targeted messaging for policy and practice, use of media and social media, and event management to engage audiences and build trust). LESSONS LEARNT: The CoP helped build a greater working knowledge of science communication among its members, leading to increased KT activities. Within an environment of low resourcing for science communication, bringing researchers together with science communication experts can help promote the communication of synthesised evidence and unified messaging on 'what works for prevention'.

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.

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.

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.

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).

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.

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.

Preparation for Cancer Treatment: A Cross-Sectional Study Examining Patient Self-Reported Experiences and Correlates.

Given the significant physical and psychosocial side-effects cancer treatment has on individuals, it is important to ensure patients receive adequate preparation prior to treatment. The purpose of this study was to explore, among Australian oncology patients, (i) the self-reported treatment preparation information they received; and (ii) the patient characteristics associated with the treatment preparation information received. Patients in the early stages of cancer treatment were invited to complete a survey exploring their receipt of information about treatment preparation. Items assessed patients' self-report of whether they had received information about the treatment process. A total of 165 participants completed the survey. Patients most frequently reported receiving information about how they might feel physically (94%) and what side effects to watch for (93%). One in five patients reported not receiving information about how to cope with any stress or worry related to treatment. Females reported receiving significantly fewer items of care compared to males (p = 0.0083). This study suggests that while self-reported preparation for cancer treatment is generally high, components of preparation related to psychosocial concerns could be improved. Survey data could be used as a feedback tool for centres to monitor delivery of care.

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.

Systems-level audit and feedback interventions to improve oncology care: a scoping review.

Audit and feedback is commonly used as a method of both monitoring and attempting to improve the quality of healthcare. No review has examined the literature on systems-level audit and feedback strategies to improve the quality of oncology care. This scoping review examines the number, care focus (technical, nontechnical, or both) and methodological quality of published intervention studies which have used systems-level audit and feedback intended to improve the quality of care delivered in oncology treatment centers. Medline, Embase, PsycINFO, and the Cochrane database were searched, from inception to March 2021, for intervention studies which examined the effectiveness of systems-level audit and feedback in improving care for cancer patients. Studies which met the Effective Practice and Organization of Care (EPOC) minimum design criteria were then assessed using the EPOC risk of bias tool. Study characteristics and outcomes were extracted for those meeting methodological criteria. A narrative approach was used to synthesize the results. A total of 32 intervention studies met the inclusion criteria, of which 53% focused on technical aspects of care, 31% focused on nontechnical and 16% focused on both. Four of the included 32 studies met the EPOC minimum design criteria (13%). Most studies had a before-after study design (75%; n = 24) and methodological quality of the final four studies was moderate. Audit and feedback studies involving oncology treatment centers have primarily focused on technical care aspects. The low number and moderate methodological quality of the studies make it difficult to draw clear inferences about the effectiveness of systems-level audit and feedback. Furthermore, high-quality audit and feedback interventions are required across technical and nontechnical aspects of care to quantify the effectiveness of strategies for improving cancer care and ensure healthcare resources are being optimized.

Auditing clinical practice and providing performance feedback is commonly used as a method of monitoring and attempting to improve the quality of healthcare. The scope of the research evidence on audit and feedback strategies to improve patient care across an oncology treatment centers is currently unclear. A scoping review of the literature was conducted to explore the research in this area. After assessing included studies for scientific rigor, only four intervention studies were considered to use a sound research design. The low number of studies make it difficult to draw clear conclusions about the effectiveness of systems-level audit and feedback. This area represents an important field for future research.

Association between electronic nicotine delivery systems and electronic non-nicotine delivery systems with initiation of tobacco use in individuals aged < 20 years. A systematic review and meta-analysis.

BACKGROUND: This systematic review described the association between electronic nicotine delivery systems and electronic non-nicotine delivery systems (ENDS/ENNDS) use among non-smoking children and adolescents aged <20 years with subsequent tobacco use. METHODS: We searched five electronic databases and the grey literature up to end of September 2020. Prospective longitudinal studies that described the association between ENDS/ENNDS use, and subsequent tobacco use in those aged < 20 years who were non-smokers at baseline were included. The Joanna Briggs Institute Critical Appraisal Checklist was used to assess risk of bias. Data were extracted by two reviewers and pooled using a random-effects meta-analysis. We generated unadjusted and adjusted risk ratios (ARRs) describing associations between ENDS/ENNDS and tobacco use. FINDINGS: A total of 36 publications met the eligibility criteria, of which 25 were included in the systematic review (23 in the meta-analysis) after exclusion of overlapping studies. Sixteen studies had high to moderate risk of bias. Ever users of ENDS/ENNDS had over three times the risk of ever cigarette use (ARR 3·01 (95% CI: 2·37, 3·82; p<0·001, I2: 82·3%), and current cigarette use had over two times the risk (ARR 2·56 (95% CI: 1·61, 4·07; p<0·001, I2: 77·3%) at follow up. Among current ENDS/ENNDS users, there was a significant association with ever (ARR 2·63 (95% CI: 1·94, 3·57; p<0·001, I2: 21·2%)), but not current cigarette use (ARR 1·88 (95% CI: 0·34, 10·30; p = 0·47, I2: 0%)) at follow up. For other tobacco use, ARR ranged between 1·55 (95% CI 1·07, 2·23) and 8·32 (95% CI: 1·20, 57·04) for waterpipe and pipes, respectively. Additionally, two studies examined the use of ENNDS (non-nicotine devices) and found a pooled adjusted RR of 2·56 (95% CI: 0·47, 13·94, p = 0.035). CONCLUSION: There is an urgent need for policies that regulate the availability, accessibility, and marketing of ENDS/ENNDS to children and adolescents. Governments should also consider adopting policies to prevent ENDS/ENNDS uptake and use in children and adolescents, up to and including a ban for this group.

Are the Physical Environments of Treatment Centres Meeting Recommendations for Patient-Centred Care? Perceptions of Haematological Cancer Patients.

The physical environment of a treatment centre may impact the well-being of patients and their perceptions of care. Outpatients with haematological cancer may be in contact with the treatment centre over long periods and could be particularly affected. This study aimed to identify haematological cancer patients' perceptions of supportive design elements in the hospital they attended and associations with self-reported mood or well-being. Outpatients from three large metropolitan hospitals in Australia were mailed a self-report questionnaire and responded to statements about the treatment centre concerning their sense of control over the physical surroundings; access to social support; and access to positive distractions. Participants also reported whether they felt the overall environment affected their mood or wellbeing. Of the outpatients who returned the questionnaire (n = 165), almost one-quarter (24%) agreed that the physical environment of the hospital affected their mood or well-being. Patients who disagreed that the hospital was a comfortable temperature or agreed that waiting rooms were crowded had significantly higher odds of reporting that the treatment environment affected their mood or wellbeing. Implementing systems to reduce overcrowding in waiting rooms and increasing patient control over personal temperature in clinics may be the most effective strategies to improve patient wellbeing.

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.

The Patients' Perspective: Hematological Cancer Patients' Experiences of Adverse Events as Part of Care.

OBJECTIVE: To describe in a sample of patients with a confirmed diagnosis of a hematological cancer: (a) the proportion who self-report experiencing an unexpected adverse event as part of their care; (b) how the adverse event was handled by the health-care organization; and (c) the sociodemographic, disease, and treatment characteristics associated with experiencing an adverse event. DESIGN: Cross sectional survey. SETTING: Three Australian hematological oncology treatment centers. PARTICIPANTS: Individuals with a confirmed diagnosis of a hematological cancer. MAIN OUTCOME MEASURES: Participants were asked if they had ever experienced an adverse event in their cancer care. Those who did were asked about their perceptions concerning what the adverse event was related to, how much harm the event caused, who identified the adverse event, and how the health-care organization responded to the adverse event. RESULTS: Forty-two participants (26.4%) perceived that they had experienced an unexpected adverse event as part of their care. Most were told about the event as soon as it happened (62%) and were given an explanation about why the event occurred (75%). Fewer were given information about how to take the matter further if they wished (43%). Participants who were unemployed, retired, disabled, or performed home duties and those whose employment status was "other" had higher odds of reporting an adverse event than those in full- or part-time employment. CONCLUSIONS: There is a need for routinely querying patients during their treatment regarding the occurrence of unexpected adverse events. In addition, there is a need for improvement in the responses of health-care providers and the health-care system to these events in regard to full disclosure, apology, and options available to the patient for resolution.

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.

Nurses perspectives on healthcare errors in oncology care: A cross-sectional study.

PURPOSE: Recognition and responses of the health system to healthcare errors are key areas for improvement in oncology. Despite their role in direct patient care, nurses' perceptions of errors have rarely been explored. The aim of this study was to determine oncology nurses' direct experience of healthcare errors in the previous six months; the circumstances surrounding the error; and ensuing actions by the healthcare system. METHODS: Cross-sectional survey of nurses who were members of an oncology nursing society and/or registered or enrolled nurses employed in an oncology setting. Participants indicated whether they had direct experience (i.e. direct involvement or witnessing) of error(s) in the previous six months. Those who experienced an error indicated their perceptions of the: cause; location and phase of care; how the error was identified, who was responsible, level of harm and action(s) taken. RESULTS: 67% (n = 65/97) of nurses who completed the survey had direct experience with at least one error in the previous six months. According to these nurses, most occurred during treatment (n = 48, 74%), happened in outpatient clinics (n = 28, 43%) and were related to chemotherapy (n = 15, 23%). Nurses perceived errors were primarily caused by nurses (n = 36, 55%) and doctors (n = 27, 42%); and 54% (n = 35) were deemed 'near-miss'. Nurses perceived errors were recorded (n = 40, 62%), explained to patients (n = 33, 51%) and an apology provided (n = 32, 49%). CONCLUSION: Two-thirds of oncology nurses in this study had direct experience with an error in the previous six months. Nurses perceived response to errors as inconsistent with open disclosure standards. Strategies to improve accuracy of measures of error and response of the health system, including adherence to open disclosure processes, are required.

Cancer patient preferences for the provision of information regarding emotional concerns in relation to medical procedures: A discrete choice experiment.

OBJECTIVE: To explore the preferences of people with cancer regarding the timing and format of information provision about emotional concerns that may occur when undergoing medical procedures. METHODS: Eligible cancer survivors were mailed a survey containing discrete choice scenarios examining their timing and format preferences for information about potential emotional concerns associated with an upcoming hypothetical medical procedure. RESULTS: Of 356 eligible patients, 271 (76 %) completed the survey. Both face-to-face discussion and written materials were preferred as the mode of information delivery over access to a website. In order of descending preference, participants preferred to receive the information 1 week, 3 days and the day of the procedure. There were no differences in preferences for timing or format between subgroups based on age, gender, education and cancer type. CONCLUSION: This study has demonstrated that cancer patients prefer receiving information about emotional concerns that might be experienced as part of a medical procedure in either written or via face-to-face format, and one week before the procedure. PRACTICE IMPLICATIONS: In order to provide patient-centred care, clinicians and the healthcare system more broadly should consider patient preferences for information delivery about upcoming medical procedures. INFORMATION: preparation for medical procedures; discrete choice; oncology; patient preference; emotional response.

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.