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.

Healthy eating interventions delivered in early childhood education and care settings for improving the diet of children aged six months to six years.

BACKGROUND: Dietary intake during early childhood can have implications on child health and developmental trajectories. Early childhood education and care (ECEC) services are recommended settings to deliver healthy eating interventions as they provide access to many children during this important period. Healthy eating interventions delivered in ECEC settings can include strategies targeting the curriculum (e.g. nutrition education), ethos and environment (e.g. menu modification) and partnerships (e.g. workshops for families). Despite guidelines supporting the delivery of healthy eating interventions in this setting, little is known about their impact on child health. OBJECTIVES: To assess the effectiveness of healthy eating interventions delivered in ECEC settings for improving dietary intake in children aged six months to six years, relative to usual care, no intervention or an alternative, non-dietary intervention. Secondary objectives were to assess the impact of ECEC-based healthy eating interventions on physical outcomes (e.g. child body mass index (BMI), weight, waist circumference), language and cognitive outcomes, social/emotional and quality-of-life outcomes. We also report on cost and adverse consequences of ECEC-based healthy eating interventions. SEARCH METHODS: We searched eight electronic databases including CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, ERIC, Scopus and SportDiscus on 24 February 2022. We searched reference lists of included studies, reference lists of relevant systematic reviews, the World Health Organization International Clinical Trials Registry Platform, ClinicalTrials.gov and Google Scholar, and contacted authors of relevant papers. SELECTION CRITERIA: We included randomised controlled trials (RCTs), including cluster-RCTs, stepped-wedge RCTs, factorial RCTs, multiple baseline RCTs and randomised cross-over trials, of healthy eating interventions targeting children aged six months to six years that were conducted within the ECEC setting. ECEC settings included preschools, nurseries, kindergartens, long day care and family day care. To be included, studies had to include at least one intervention component targeting child diet within the ECEC setting and measure child dietary or physical outcomes, or both. DATA COLLECTION AND ANALYSIS: Pairs of review authors independently screened titles and abstracts and extracted study data. We assessed risk of bias for all studies against 12 criteria within RoB 1, which allows for consideration of how selection, performance, attrition, publication and reporting biases impact outcomes. We resolved discrepancies via consensus or by consulting a third review author. Where we identified studies with suitable data and homogeneity, we performed meta-analyses using a random-effects model; otherwise, we described findings using vote-counting approaches and via harvest plots. For measures with similar metrics, we calculated mean differences (MDs) for continuous outcomes and risk ratios (RRs) for dichotomous outcomes. We calculated standardised mean differences (SMDs) for primary and secondary outcomes where studies used different measures. We applied GRADE to assess certainty of evidence for dietary, cost and adverse outcomes. MAIN RESULTS: We included 52 studies that investigated 58 interventions (described across 96 articles). All studies were cluster-RCTs. Twenty-nine studies were large (≥ 400 participants) and 23 were small (< 400 participants). Of the 58 interventions, 43 targeted curriculum, 56 targeted ethos and environment, and 50 targeted partnerships. Thirty-eight interventions incorporated all three components. For the primary outcomes (dietary outcomes), we assessed 19 studies as overall high risk of bias, with performance and detection bias being most commonly judged as high risk of bias. ECEC-based healthy eating interventions versus usual practice or no intervention may have a positive effect on child diet quality (SMD 0.34, 95% confidence interval (CI) 0.04 to 0.65; P = 0.03, I2 = 91%; 6 studies, 1973 children) but the evidence is very uncertain. There is moderate-certainty evidence that ECEC-based healthy eating interventions likely increase children's consumption of fruit (SMD 0.11, 95% CI 0.04 to 0.18; P < 0.01, I2 = 0%; 11 studies, 2901 children). The evidence is very uncertain about the effect of ECEC-based healthy eating interventions on children's consumption of vegetables (SMD 0.12, 95% CI -0.01 to 0.25; P =0.08, I2 = 70%; 13 studies, 3335 children). There is moderate-certainty evidence that ECEC-based healthy eating interventions likely result in little to no difference in children's consumption of non-core (i.e. less healthy/discretionary) foods (SMD -0.05, 95% CI -0.17 to 0.08; P = 0.48, I2 = 16%; 7 studies, 1369 children) or consumption of sugar-sweetened beverages (SMD -0.10, 95% CI -0.34 to 0.14; P = 0.41, I2 = 45%; 3 studies, 522 children). Thirty-six studies measured BMI, BMI z-score, weight, overweight and obesity, or waist circumference, or a combination of some or all of these. ECEC-based healthy eating interventions may result in little to no difference in child BMI (MD -0.08, 95% CI -0.23 to 0.07; P = 0.30, I2 = 65%; 15 studies, 3932 children) or in child BMI z-score (MD -0.03, 95% CI -0.09 to 0.03; P = 0.36, I2 = 0%; 17 studies; 4766 children). ECEC-based healthy eating interventions may decrease child weight (MD -0.23, 95% CI -0.49 to 0.03; P = 0.09, I2 = 0%; 9 studies, 2071 children) and risk of overweight and obesity (RR 0.81, 95% CI 0.65 to 1.01; P = 0.07, I2 = 0%; 5 studies, 1070 children). ECEC-based healthy eating interventions may be cost-effective but the evidence is very uncertain (6 studies). ECEC-based healthy eating interventions may have little to no effect on adverse consequences but the evidence is very uncertain (3 studies). Few studies measured language and cognitive skills (n = 2), social/emotional outcomes (n = 2) and quality of life (n = 3). AUTHORS' CONCLUSIONS: ECEC-based healthy eating interventions may improve child diet quality slightly, but the evidence is very uncertain, and likely increase child fruit consumption slightly. There is uncertainty about the effect of ECEC-based healthy eating interventions on vegetable consumption. ECEC-based healthy eating interventions may result in little to no difference in child consumption of non-core foods and sugar-sweetened beverages. Healthy eating interventions could have favourable effects on child weight and risk of overweight and obesity, although there was little to no difference in BMI and BMI z-scores. Future studies exploring the impact of specific intervention components, and describing cost-effectiveness and adverse outcomes are needed to better understand how to maximise the impact of ECEC-based healthy eating interventions.

Healthy eating interventions delivered in early childhood education and care settings for improving the diet of children aged six months to six years.

BACKGROUND: Dietary intake during early childhood can have implications on child health and developmental trajectories. Early childhood education and care (ECEC) services are recommended settings to deliver healthy eating interventions as they provide access to many children during this important period. Healthy eating interventions delivered in ECEC settings can include strategies targeting the curriculum (e.g. nutrition education), ethos and environment (e.g. menu modification) and partnerships (e.g. workshops for families). Despite guidelines supporting the delivery of healthy eating interventions in this setting, little is known about their impact on child health. OBJECTIVES: To assess the effectiveness of healthy eating interventions delivered in ECEC settings for improving dietary intake in children aged six months to six years, relative to usual care, no intervention or an alternative, non-dietary intervention. Secondary objectives were to assess the impact of ECEC-based healthy eating interventions on physical outcomes (e.g. child body mass index (BMI), weight, waist circumference), language and cognitive outcomes, social/emotional and quality-of-life outcomes. We also report on cost and adverse consequences of ECEC-based healthy eating interventions. SEARCH METHODS: We searched eight electronic databases including CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, ERIC, Scopus and SportDiscus on 24 February 2022. We searched reference lists of included studies, reference lists of relevant systematic reviews, the World Health Organization International Clinical Trials Registry Platform, ClinicalTrials.gov and Google Scholar, and contacted authors of relevant papers. SELECTION CRITERIA: We included randomised controlled trials (RCTs), including cluster-RCTs, stepped-wedge RCTs, factorial RCTs, multiple baseline RCTs and randomised cross-over trials, of healthy eating interventions targeting children aged six months to six years that were conducted within the ECEC setting. ECEC settings included preschools, nurseries, kindergartens, long day care and family day care. To be included, studies had to include at least one intervention component targeting child diet within the ECEC setting and measure child dietary or physical outcomes, or both. DATA COLLECTION AND ANALYSIS: Pairs of review authors independently screened titles and abstracts and extracted study data. We assessed risk of bias for all studies against 12 criteria within RoB 1, which allows for consideration of how selection, performance, attrition, publication and reporting biases impact outcomes. We resolved discrepancies via consensus or by consulting a third review author. Where we identified studies with suitable data and homogeneity, we performed meta-analyses using a random-effects model; otherwise, we described findings using vote-counting approaches and via harvest plots. For measures with similar metrics, we calculated mean differences (MDs) for continuous outcomes and risk ratios (RRs) for dichotomous outcomes. We calculated standardised mean differences (SMDs) for primary and secondary outcomes where studies used different measures. We applied GRADE to assess certainty of evidence for dietary, cost and adverse outcomes.  MAIN RESULTS: We included 52 studies that investigated 58 interventions (described across 96 articles). All studies were cluster-RCTs. Twenty-nine studies were large (≥ 400 participants) and 23 were small (< 400 participants). Of the 58 interventions, 43 targeted curriculum, 56 targeted ethos and environment, and 50 targeted partnerships. Thirty-eight interventions incorporated all three components. For the primary outcomes (dietary outcomes), we assessed 19 studies as overall high risk of bias, with performance and detection bias being most commonly judged as high risk of bias. ECEC-based healthy eating interventions versus usual practice or no intervention may have a positive effect on child diet quality (SMD 0.34, 95% confidence interval (CI) 0.04 to 0.65; P = 0.03, I2 = 91%; 6 studies, 1973 children) but the evidence is very uncertain. There is moderate-certainty evidence that ECEC-based healthy eating interventions likely increase children's consumption of fruit (SMD 0.11, 95% CI 0.04 to 0.18; P < 0.01, I2 = 0%; 11 studies, 2901 children). The evidence is very uncertain about the effect of ECEC-based healthy eating interventions on children's consumption of vegetables (SMD 0.12, 95% CI -0.01 to 0.25; P =0.08, I2 = 70%; 13 studies, 3335 children). There is moderate-certainty evidence that ECEC-based healthy eating interventions likely result in little to no difference in children's consumption of non-core (i.e. less healthy/discretionary) foods (SMD -0.05, 95% CI -0.17 to 0.08; P = 0.48, I2 = 16%; 7 studies, 1369 children) or consumption of sugar-sweetened beverages (SMD -0.10, 95% CI -0.34 to 0.14; P = 0.41, I2 = 45%; 3 studies, 522 children). Thirty-six studies measured BMI, BMI z-score, weight, overweight and obesity, or waist circumference, or a combination of some or all of these. ECEC-based healthy eating interventions may result in little to no difference in child BMI (MD -0.08, 95% CI -0.23 to 0.07; P = 0.30, I2 = 65%; 15 studies, 3932 children) or in child BMI z-score (MD -0.03, 95% CI -0.09 to 0.03; P = 0.36, I2 = 0%; 17 studies; 4766 children). ECEC-based healthy eating interventions may decrease child weight (MD -0.23, 95% CI -0.49 to 0.03; P = 0.09, I2 = 0%; 9 studies, 2071 children) and risk of overweight and obesity (RR 0.81, 95% CI 0.65 to 1.01; P = 0.07, I2 = 0%; 5 studies, 1070 children). ECEC-based healthy eating interventions may be cost-effective but the evidence is very uncertain (6 studies). ECEC-based healthy eating interventions may have little to no effect on adverse consequences but the evidence is very uncertain (3 studies). Few studies measured language and cognitive skills (n = 2), social/emotional outcomes (n = 2) and quality of life (n = 3). AUTHORS' CONCLUSIONS: ECEC-based healthy eating interventions may improve child diet quality slightly, but the evidence is very uncertain, and likely increase child fruit consumption slightly. There is uncertainty about the effect of ECEC-based healthy eating interventions on vegetable consumption. ECEC-based healthy eating interventions may result in little to no difference in child consumption of non-core foods and sugar-sweetened beverages. Healthy eating interventions could have favourable effects on child weight and risk of overweight and obesity, although there was little to no difference in BMI and BMI z-scores. Future studies exploring the impact of specific intervention components, and describing cost-effectiveness and adverse outcomes are needed to better understand how to maximise the impact of ECEC-based healthy eating interventions.

Prevalence and type of unmet needs experienced by carers of people living with dementia.

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 .

Exploring the effect of a school-based cluster-randomised controlled trial to increase the scheduling of physical activity for primary school students on teachers' physical activity.

BACKGROUND: To determine if a school-based physical activity (PA) intervention that supported primary school teachers to schedule PA during school hours impacted their own PA. METHODS: A 2x2 factorial group cluster-randomised controlled trial was undertaken in 12 Australian primary schools. The nine-month intervention supported classroom teachers to increase scheduled weekly PA for their class via physical education, sport, Energisers and integrated lessons. Teachers' PA (n = 76) was measured at follow-up only using accelerometers (Actigraph GT3X or GT9X). Linear mixed models were used to estimate between-group differences in teachers' mean minutes of sedentary, light, moderate-to-vigorous-intensity physical activity (MVPA) across the school day and during class-time. RESULTS: At follow-up, there were non-significant between-group differences favouring intervention teachers, compared to controls, for light PA (4.9 minutes, 95% CI: -6.3, 16.0; P = .33) and MVPA (0.4 minutes, 95% CI: -10.9, 11.6; P = .94) across the school day; although not favouring the intervention for sedentary behaviour (5.1 minutes, 95% CI: -11.4, 21.7; P = .48). Similar patterns were seen during class-time for light PA and sedentary time, but not for MVPA. CONCLUSIONS: Supporting teachers with the scheduling of PA for their class may impact on their own PA. Fully powered studies are needed to better understand the impact of the intervention on teachers' PA. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12616001228471 (http://www.anzctr.org.au/).

Reducing Hospital Transfers from Aged Care Facilities: A Large-Scale Stepped Wedge Evaluation.

BACKGROUND/OBJECTIVES: Older people living in residential aged care facilities (RACFs) experience acute deterioration requiring assessment and decision making. We evaluated the impact of a large-scale regional Aged Care Emergency (ACE) program in reducing hospital admissions and emergency department (ED) transfers. DESIGN: A stepped wedge nonrandomized cluster trial with 11 steps, implemented from May 2013 to August 2016. SETTING: A large regional and rural area of northern and western New South Wales, Australia. PARTICIPANTS: Nine hospital EDs and 81 RACFs participated in the evaluation. INTERVENTION: The ACE program is an integrated nurse-led intervention underpinned by a community of practice designed to improve the capability of RACFs managing acutely unwell residents. It includes telephone support, evidence-based algorithms, defining goals of care for ED transfer, case management in the ED, and an education program. MEASUREMENTS: ED transfers and subsequent hospital admissions were collected from administrative data including 13 months baseline and 9 months follow-up. RESULTS: A total of 18,837 eligible ED visits were analyzed. After accounting for clustering by RACFs and adjusting for time of the year as well as RACF characteristics, a statistically significant reduction in hospital admissions (adjusted incident rate ratio = .79; 95% confidence interval [CI] = .68-.92); P = .0025) was seen (i.e., residents were 21% less likely to be admitted to the hospital). This was also observed in ED visit rates (adjusted incidence rate ratio = .80; 95% CI = .69-.92; P = .0023) (i.e., residents were 20% less likely to be transferred to the ED). Seven-day ED re-presentation fell from 5.7% to 4.9%, and 30-day hospital readmissions fell from 12% to 10%. CONCLUSION: The stepped wedge design allowed rigorous evaluation of a real-world large-scale intervention. These results confirm that the ACE program can be scaled up to a large geographic area and can reduce ED visits and hospitalization of older people with complex healthcare needs living in RACFs.

Development and Validation of the MiPrep Survey: An Instrument Assessing Patients' Perceived Preparation for Medical Interventions Including Medical Imaging, Radiotherapy, and Surgery.

BACKGROUND: Adequately preparing patients for medical interventions is an important component of quality healthcare. Nevertheless, few instruments for assessing patients' preparation exist. OBJECTIVES: To develop a psychometrically rigorous instrument to assess patients' perceptions of the quality of preparation. METHODS: An instrument to measure patients' preparation for medical interventions (MiPrep) was developed and tested with patients undergoing medical imaging, radiotherapy, or surgery. Patients were recruited and asked to complete 2 surveys. Survey A assessed patient and intervention characteristics. Survey B (postintervention) contained MiPrep to assess validity (face, content, and construct) and reliability (internal consistency and test-retest). RESULTS: A total of 869 (85%) patients consented to participate and 551 (63%) returned the postintervention survey. Face and content validity were demonstrated. Exploratory factor analysis identified 2 survey modules: receipt and adequacy of information (2 domains) and overall appraisal of patient-centered care (1 domain). Reliability was evidenced by adequate internal consistency (Cronbach α 0.81-0.89) and item-total correlations higher than 0.20. Nevertheless, individual item test-retest reliability requires further confirmation. The final instrument contained 27 items. CONCLUSIONS: The MiPrep instrument has evidence of being a valid and reliable instrument of preparation for medical interventions. Healthcare providers can use the instrument as a quality assurance tool to identify areas for improvement and areas of excellence in patients' preparation. Future studies should verify these findings in other populations and examine the divergent and predictive validity of the instrument.

Raised Anxiety Levels Among Outpatients Preparing to Undergo a Medical Imaging Procedure: Prevalence and Correlates.

PURPOSE: To examine the percentage of patients with raised state anxiety levels before undergoing a medical imaging procedure; their attribution of procedural-related anxiety or worry; and sociodemographic, health, and procedural characteristics associated with raised state anxiety levels. MATERIALS AND METHODS: This prospective cross-sectional study was undertaken in the outpatient medical imaging department at a major public hospital in Australia, with institutional board approval. Adult outpatients undergoing a medical imaging procedure (CT, x-ray, MRI, ultrasound, angiography, or fluoroscopy) completed a preprocedural survey. Anxiety was measured by the short-form state scale of the six-item State-Trait Anxiety Inventory (STAI: Y-6). The number and percentage of participants who reported raised anxiety levels (defined as a STAI: Y-6 score ≥ 33.16) and their attribution of procedural-related anxiety or worry were calculated. Characteristics associated with raised anxiety were examined using multiple logistic regression analysis. RESULTS: Of the 548 (86%) patients who consented to participate, 488 (77%) completed all STAI: Y-6 items. Half of the participants (n = 240; 49%) experienced raised anxiety, and of these, 48% (n = 114) reported feeling most anxious or worried about the possible results. Female gender, imaging modality, medical condition, first time having the procedure, and lower patient-perceived health status were statistically significantly associated with raised anxiety levels. CONCLUSION: Raised anxiety is common before medical imaging procedures and is mostly attributed to the possible results. Providing increased psychological preparation, particularly to patients with circulatory conditions or neoplasms or those that do not know their medical condition, may help reduce preprocedural anxiety among these subgroups.

Consumer input into health care: Time for a new active and comprehensive model of consumer involvement.

BACKGROUND: To ensure the provision of patient-centred health care, it is essential that consumers are actively involved in the process of determining and implementing health-care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health-care improvements. OBJECTIVES: We propose a new active model of consumer engagement that aims to overcome these limitations. This model involves the following: (i) the development of a new measure of consumer perceptions; (ii) low cost and frequent electronic data collection of patient views of quality improvements; (iii) efficient feedback to the health-care decision makers; and (iv) active involvement of consumers that fosters power to influence health system changes.

Exploring women's experiences with a decision aid for neoadjuvant systemic therapy for operable breast cancer.

BACKGROUND: Some women with operable breast cancer have a choice between receiving upfront surgery followed by chemotherapy or neoadjuvant systemic therapy (NAST) prior to receiving surgery. While survival outcomes are equivalent for both options, the decision about treatment sequence can be difficult due to its complexity and perceived urgency. A decision aid has been developed to help patients decide on whether to receive NAST. AIMS: To explore, qualitatively, women's use and perceived benefit of a decision aid to help with their decision on NAST. METHODS: A framework analysis process was conducted on a purposeful sample of 20, one-on-one, semistructured phone interviews with early-stage breast cancer patients eligible for NAST. Participants had recently decided on whether or not to have NAST. RESULTS: Patients perceived the decision aid as useful to becoming more informed and involved in making a decision as to whether they receive NAST. They described the information provided in the decision aid as reliable, relevant, sufficient in terms of amount, and tailored to their needs. Reading and rereading the decision aid at home in-between the consultations with their surgeon and their medical oncologist allowed women to better understand their treatment options and easily integrate the decision aid into their care. The decision aid seemed to confirm but not change women's decisions on NAST. CONCLUSION: The decision aid appears to help breast cancer patients support their decision about whether to receive NAST. Patients' ability to review the decision aid in-between two consultations seems to be an acceptable and feasible way of integrating the decision aid into patients' care.

Patients' Experiences of Preparation for Radiation Therapy: A Qualitative Study.

PURPOSE/OBJECTIVES: To explore patients' experiences of and preferences for preparation for radiation therapy.
. RESEARCH APPROACH: Qualitative study. 
. PARTICIPANTS: 26 individuals who recently received radiation therapy for cancer. 
. SETTING: One Australian radiation oncology clinic located within a tertiary referral hospital in New South Wales.
. METHODOLOGIC APPROACH: Semistructured interviews were conducted and analyzed based on a qualitative descriptive approach and content analysis of the transcribed interviews.
. FINDINGS: Four main themes related to preparation techniques were identified. CONCLUSIONS: The information gained in this study indicates what strategies may best prepare patients for radiation therapy. 
. INTERPRETATION: Providing patients with information that creates a realistic expectation of what radiation therapy involves both before and after treatment seems particularly important in helping them feel prepared.

Prevalence and associates of psychological distress in haematological cancer survivors.

PURPOSE: To explore outcomes of psychological distress, including anxiety, depression and stress, amongst adult haematological cancer survivors, with a specific focus on potential differences between rural and urban survivors. METHODS: One thousand four hundred fourteen urban and rural survivors were recruited from five Australian population-based cancer registries and completed a self-report pen-and-paper survey on their well-being, including the Depression Anxiety and Stress Scale 21-item version. RESULTS: A quarter of survivors were identified as reporting above normal levels of anxiety and depression, respectively, and almost one fifth (17 %) reported above normal levels of stress. There were no statistically significant differences in the percentage of rural and urban survivors reporting above normal levels of anxiety, depression, or stress. Survivors who had experienced financial burden due to their cancer or were of middle age had higher odds of reporting multiple domains of psychological distress, compared to their counterparts. CONCLUSIONS: Haematological cancer survivors diagnosed during middle age or who experience increased financial burden as a result of their diagnosis may require additional support and care with regards to psychological distress.

Cross-Sectional Data That Explore the Relationship Between Outpatients' Quality of Life and Preferences for Quality Improvement in Oncology Settings.

PURPOSE: This cross-sectional study assessed the association between oncology outpatients' quality improvement preferences and health-related quality of life (HRQoL). Implementation of specific initiatives preferred by patients with lower HRQoL may be a strategic approach to enhancing care for potentially vulnerable patients. METHODS: English-speaking adults were recruited from five outpatient chemotherapy clinics located in New South Wales, Australia. Using touch screen devices, participants selected up to 25 initiatives that would improve their experiences and completed the Functional Assessment of Cancer Therapy-General (FACT-G) survey. The logistic odds of selecting an initiative according to FACT-G scores were calculated to determine whether preferences were associated with HRQoL after controlling for potential confounders. RESULTS: Of the 411 eligible outpatients approached to participate, 263 (64%) completed surveys. Commonly selected initiatives were up-to-date information on treatment and condition progress (19.8%), access to or information on financial assistance (18.3%), and reduced clinic wait times (17.5%). For those with relatively lower FACT-G scores, the adjusted odds of selecting five initiatives illustrated an increasing trend: convenient appointment scheduling systems (+23% [P = .002]), reduced wait times (+15% [P = .01]), information on medical emergencies (+14% [P = .04]), access to or information on financial assistance (+15% [P = .009]), help to maintain daily living activities (+18% [P = .007]). CONCLUSION: Two areas of improvement were commonly selected: easily accessible health services and information and support for self-management. Although the results suggest an association between a few quality improvement preferences and HRQoL, a wider spectrum of patient characteristics must be considered when targeting quality improvement to patient subgroups.

Wilfully out of sight? A literature review on the effectiveness of cancer-related decision aids and implementation strategies.

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.

Preparing patients for medical interventions: A systematic review of the psychometric qualities of published instruments.

OBJECTIVE: Preparing patients for medical interventions improves patient outcomes and is an ethical and legal imperative. This review examines the characteristics and psychometric properties of published instruments which assess patients' preparation for medical interventions. METHODS: Medline, CINAHL, EMBASE and PsycINFO electronic databases were searched from the date of their inception to November 2015. Data-based publications describing the development or validation of a self-report instrument designed to assess the quality of adult patients' perceived preparation for a medical intervention were included. RESULTS: Nine publications described the development or validation of seven instruments which met inclusion criteria. The psychometric qualities of the instruments varied. None met all of the accepted criteria for psychometric rigour. Although the Satisfaction with Cancer Information Profile met the highest number (n=5) of the defined psychometric properties, the study sample size was less than 100. Overall, content validity of the included instruments was the most frequently assessed criteria. CONCLUSION: Few instruments have been specifically developed to assess patients' self-reported preparation for medical interventions. Of the available instruments, none demonstrated adequate rigour across essential psychometric properties. PRACTICE IMPLICATIONS: The need to develop instruments examining patient preparation for medical interventions is apparent given the limitations of the instruments reviewed.

To adhere or not to adhere: Rates and reasons of medication adherence in hematological cancer patients.

To conduct a comprehensive review to examine among hematological cancer patients: (1) rates of adherence to self-administered cancer treatments; and (2) factors impacting on their adherence. Fifty two eligible publications were identified. The majority focused on Chronic Myeloid Leukaemia (CML) (n=40) and Acute Lymphoid Leukaemia (ALL) (n=11) patients. Adherence rates varied and depended on the definition and measures used. Patient understanding about their disease and treatment, and forgetting to take their medication impacted on patients' level of adherence; while the use of reminders reduced forgetfulness. There is a lack of valid and reliable information relating to medication adherence of hematological cancer patients. Based on the limited data available we provide a profile of CML and ALL patients at potential risk of medication non-adherence, as well as a proposed checklist that can be used by health care providers in assessing and supporting patients in adhering to their medication.

What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs.

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

Development and psychometric evaluation of the Quality of Patient-Centered Cancer Care measure with hematological cancer survivors.

BACKGROUND: The Institute of Medicine (IOM) recommended 6 objectives for achieving patient-centered care. However, most patient-reported outcome measures developed with cancer populations fail to address all 6 patient-centeredness dimensions. The Quality of Patient-Centered Cancer Care (QPCCC) measure was developed on the basis of IOM recommendations, and the measure's validity, reliability, and floor and ceiling effects were examined. METHODS: The development of the QPCCC measure included interviews with hematological cancer survivors and feedback from hematologists and cancer patients. To evaluate the measure's psychometric properties, hematological cancer survivors were identified via 2 cancer registries and were mailed the QPCCC measure. To examine test-retest reliability, a second QPCCC measure was mailed to survivors 7 to 14 days after they had returned the first measure. RESULTS: Overall, 545 hematological cancer survivors completed the 48-item QPCCC measure. Exploratory factor analysis revealed a 10-factor structure with factor loadings > 0.40. The subscales were labeled Treatment Delivery, Treatment Decision Making, Coordinated and Integrated Care, Emotional Support, Timely Care, Follow-Up Care, Respectful Communication, Patient Preferences and Values, Cancer Information, and Equitable Care. The QPCCC measure demonstrated acceptable internal consistency for all subscales (Cronbach's α = .73-.94). When test-retest reliability was assessed, 4 items demonstrated substantial agreement (κ > 0.60), whereas 40 items showed moderate agreement (κ = 0.41-0.60). Ceiling effects were present for 8 subscales. CONCLUSIONS: The QPCCC measure has acceptable face and content validity, construct validity, and internal consistency. However, the measure's discriminant validity and test-retest reliability could be improved. The QPCCC measure could be used to improve patient-centered cancer care.

The quality of patient-centred care: haematological cancer survivors' perceptions.

OBJECTIVE: Patient-reported outcome measures (PROMs) that assess the quality of patient-centred cancer care have failed to measure all six patient-centredness dimensions endorsed by the Institute of Medicine (IOM). This study is the first to use the Quality of Patient-Centered Cancer Care (QPCCC) measure that covers all six IOM patient-centredness dimensions to examine haematological cancer survivors' perceptions of care and characteristics associated with perceived quality of care. METHODS: Haematological cancer survivors diagnosed in the last 6 years and aged 18-80 years were recruited from two Australian state population-based cancer registries. Survivors were mailed the 48-item QPCCC measure. RESULTS: Overall, 545 haematological cancer survivors completed the measure. Areas of care most commonly identified as delivered were hospital staff showing respect to survivors (93%) and making sure the correct treatment was received (93%). Aspects of care most frequently nominated as not delivered were hospital staff helping family and friends (34%) or the survivor (32%) to find other people with similar experiences to talk to. Characteristics associated with survivors perceiving higher quality care was delivered included being employed, having private health insurance, being younger, a Non-Hodgkin lymphoma diagnosis and more recent diagnosis. Being depressed or stressed was associated with perceived lower quality of care. CONCLUSIONS: Provision of peer support programs that allow haematological cancer survivors and families and friends to talk to others in similar situations could be improved. Using PROMs to identify areas where cancer survivors perceive improvements are needed is essential to quality improvement efforts.

A systematic review of the quality of reporting in published smoking cessation trials for pregnant women: an explanation for the evidence-practice gap?

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