Thrombolysis implementation intervention and clinical outcome: a secondary analysis of a cluster randomized trial.

BACKGROUND: Multiple studies have attempted to increase the rate of intravenous thrombolysis for ischemic stroke using interventions to promote adherence to guidelines. Still, many of them did not measure individual-level impact. This study aimed to make a posthoc comparison of the clinical outcomes of patients in the "Thrombolysis ImPlementation in Stroke (TIPS)" study, which aimed to improve rates of intravenous thrombolysis in Australia. METHODS: A posthoc analysis was conducted using individual-level patient data. Excellent (Three-month post treatment modified Rankin Score 0-2) and poor clinical outcome (Three-month post treatment modified Rankin Score 5-6) and post treatment parenchymal haematoma were the three main outcomes, and a mixed logistic regression model was used to assess the difference between the intervention and control groups. RESULTS: There was a non-significant higher odds of having an excellent clinical outcome of 57% (odds ratio: 1.57; 95% CI: 0.73-3.39) and 33% (odds ratio: 1.33; 95% CI: 0.73-2.44) during the active-and post-intervention period respectively, for the intervention compared to the control group. A non-significant lower odds of having a poor clinical outcome was also found in the intervention, relative to control group of 4% (odds ratio: 0.96; 95% CI: 0.56-2.07) and higher odds of having poor outcome of 44% (odds ratio: 1.44 95% CI: 0.61-3.41) during both active and post-intervention period respectively. Similarly, a non-significant lower odds of parenchymal haematoma was also found for the intervention group during the both active- (odds ratio: 0.53; 95% CI: 0.21-1.32) and post-intervention period (odds ratio: 0.96; 95% CI: 0.36-2.52). CONCLUSION: The TIPS multi-component implementation approach was not effective in reducing the odds of post-treatment severe disability at 90 days, or post-thrombolysis hemorrhage. TRIAL REGISTRATION: Clinical Trial Registration-URL: http://www.anzctr.org.au/ Unique Identifier: ACTRN12613000939796 .

Evaluating recruitment strategies for AUSPICE, a large Australian community-based randomised controlled trial.

OBJECTIVES: To examine the effectiveness of different strategies for recruiting participants for a large Australian randomised controlled trial (RCT), the Australian Study for the Prevention through Immunisation of Cardiovascular Events (AUSPICE). DESIGN, SETTING, PARTICIPANTS: Men and women aged 55-60 years with at least two cardiovascular risk factors (hypertension, hypercholesterolaemia, overweight/obesity) were recruited for a multicentre placebo-controlled RCT assessing the effectiveness of 23-valent pneumococcal polysaccharide vaccine (23vPPV) for preventing cardiovascular events. METHODS: Invitations were mailed by the Australian Department of Human Services to people in the Medicare database aged 55-60 years; reminders were sent 2 weeks later. Invitees could respond in hard copy or electronically. Direct recruitment was supplemented by asking invitees to extend the invitation to friends and family (snowball sampling) and by Facebook advertising. MAIN OUTCOME: Proportions of invitees completing screening questionnaire and recruited for participation in the RCT. RESULTS: 21 526 of 154 992 invited people (14%) responded by completing the screening questionnaire, of whom 4725 people were eligible and recruited for the study. Despite the minimal study burden (one questionnaire, one clinic visit), the overall participation rate was 3%, or an estimated 10% of eligible persons. Only 16% of eventual participants had responded within 2 weeks of the initial invitation letter (early responders); early and late responders did not differ in their demographic or medical characteristics. Socio-economic disadvantage did not markedly influence response rates. Facebook advertising and snowball sampling did not increase recruitment. CONCLUSIONS: Trial participation rates are low, and multiple concurrent methods are needed to maximise recruitment. Social media strategies may not be successful in older age groups. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry, ACTRN12615000536561.

Improving the quality of healthcare: a cross-sectional study of the features of successful clinical networks.

OBJECTIVES: Networks of clinical experts are being established internationally to help embed evidence based care in health systems. There is emerging evidence that these clinical networks can drive quality improvement programs, but the features that distinguish successful networks are largely unknown. We examined the factors that make clinical networks effective at improving quality of care and facilitating system-wide changes. METHODS: We conducted a retrospective cross-sectional study of 19 state-wide clinical networks that reflected a range of medical and surgical specialty care and were in operation from 2006 to 2008 in New South Wales, Australia. We conducted qualitative interviews with network leaders to characterise potential impacts, and conducted internet surveys of network members to evaluate external support and the organisational and program characteristics of their respective networks. The main outcome measures were median ratings of individual network impacts on quality of care and system-wide changes, determined through independent assessment of documented evidence by an expert panel. RESULTS: We interviewed 19 network managers and 32 network co-chairs; 592 network members completed internet surveys. Three networks were rated as having had high impact on quality of care, and seven as having had high impact on system-wide change. Better-perceived strategic and operational network management was significantly associated with higher ratings of impact on quality of care (coefficient estimate 0.86; 95% confidence interval [CI] 0.02, 1.69). Better-perceived leadership of the network manager (coefficient estimate 0.47; 95% CI 0.10, 0.85) and strategic and operational network management (coefficient estimate 0.23; 95% CI 0.06, 0.41) were associated with higher ratings of impact on system-wide change. CONCLUSIONS: This study represents the largest study of clinical networks undertaken to date. The results suggest that clinical networks that span the health system can improve quality of care and facilitate system-wide change. Network management and leadership, encompassing both strategic and operational elements at the organisational level, appear to be the primary influences on network success. These findings can guide future organisational and system-wide change programs and the development or strengthening of clinical networks to help implement evidence based care to improve service delivery and outcomes.

Testing for type 2 diabetes in Indigenous Australians: guideline recommendations and current practice.

OBJECTIVES: To determine the proportion of Aboriginal Controlled Community Health Service (ACCHS) patients tested according to three national diabetes testing guidelines; to investigate whether specific patient characteristics were associated with being tested. DESIGN, SETTING AND PARTICIPANTS: Cross-sectional study of 20 978 adult Indigenous Australians not diagnosed with diabetes attending 18 ACCHSs across Australia. De-identified electronic whole service data for July 2010 - June 2013 were analysed. MAIN OUTCOMES MEASURES: Proportions of patients appropriately screened for diabetes according to three national guidelines for Indigenous Australians: National Health and Medical Research Council (at least once every 3 years for those aged 35 years or more); Royal Australian College of General Practitioners and Diabetes Australia (at least once every 3 years for those aged 18 years or more); National Aboriginal Community Controlled Health Organisation (annual testing of those aged 18 years or more at high risk of diabetes). RESULTS: 74% (95% CI, 74-75%) of Indigenous adults and 77% (95% CI, 76-78%) of 10 760 patients aged 35 or more had been tested for diabetes at least once in the past 3 years. The proportions of patients tested varied between services (range: all adults, 16-90%; people aged 35 years or more, 23-92%). 18% (95% CI, 18-19%) of patients aged 18 or more were tested for diabetes annually (range, 0.1-43%). Patients were less likely to be tested if they were under 50 years of age, were transient rather than current patients of the ACCHS, or attended the service less frequently. CONCLUSIONS: Some services achieved high rates of 3-yearly testing of Indigenous Australians for diabetes, but recommended rates of annual testing were rarely attained. ACCHSs may need assistance to achieve desirable levels of testing.

Investigations into the association between soil-transmitted helminth infections, haemoglobin and child development indices in Manufahi District, Timor-Leste.

BACKGROUND: Timor-Leste has a high prevalence of soil-transmitted helminth (STH) infections. High proportions of the population have been reported as being anaemic, and extremely high proportions of children as stunted or wasted. There have been no published analyses of the contributions of STH to these morbidity outcomes in Timor-Leste. METHODS: Using baseline cross-sectional data from 24 communities (18 communities enrolled in a cluster randomised controlled trial, and identically-collected data from six additional communities), analyses of the association between STH infections and community haemoglobin and child development indices were undertaken. Stool samples were assessed for STH using qPCR and participant haemoglobin, heights and weights were measured. Questionnaires were administered to collect demographic and socioeconomic data. Intensity of infection was categorised using correlational analysis between qPCR quantification cycle values and eggs per gram of faeces equivalents, with algorithms generated from seeding experiments. Mixed-effects logistic and multinomial regression were used to assess the association between STH infection intensity classes and anaemia, and child stunting, wasting and underweight. RESULTS: Very high stunting (60%), underweight (60%), and wasting (20%) in children, but low anaemia prevalence (15%), were found in the study communities. STH were not significantly associated with morbidity outcomes. Male children and those in the poorest socioeconomic quintile were significantly more likely to be moderately and severely stunted. Male children were significantly more likely than female children to be severely underweight. Increasing age was also a risk factor for being underweight. Few risk factors emerged for wasting in these analyses. CONCLUSIONS: According to World Health Organization international reference standards, levels of child morbidity in this population constitute a public health emergency, although the international reference standards need to be critically evaluated for their applicability in Timor-Leste. Strategies to improve child development and morbidity outcomes, for example via nutrition and iron supplementation programmes, are recommended for these communities. Despite the apparent lack of an association from STH in driving anaemia, stunting, wasting and underweight, high endemicity suggests a need for STH control strategies. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry ACTRN12614000680662 ; retrospectively registered.

Water, Sanitation and Hygiene (WASH) and environmental risk factors for soil-transmitted helminth intensity of infection in Timor-Leste, using real time PCR.

BACKGROUND: No investigations have been undertaken of risk factors for intensity of soil-transmitted helminth (STH) infection in Timor-Leste. This study provides the first analysis of risk factors for intensity of STH infection, as determined by quantitative PCR (qPCR), examining a broad range of water, sanitation and hygiene (WASH) and environmental factors, among communities in Manufahi District, Timor-Leste. METHODS: A baseline cross-sectional survey of 18 communities was undertaken as part of a cluster randomised controlled trial, with additional identically-collected data from six other communities. qPCR was used to assess STH infection from stool samples, and questionnaires administered to collect WASH, demographic, and socioeconomic data. Environmental information was obtained from open-access sources and linked to infection outcomes. Mixed-effects multinomial logistic regression was undertaken to assess risk factors for intensity of Necator americanus and Ascaris infection. RESULTS: 2152 participants provided stool and questionnaire information for this analysis. In adjusted models incorporating WASH, demographic and environmental variables, environmental variables were generally associated with infection intensity for both N. americanus and Ascaris spp. Precipitation (in centimetres) was associated with increased risk of moderate-intensity (adjusted relative risk [ARR] 6.1; 95% confidence interval [CI] 1.9-19.3) and heavy-intensity (ARR 6.6; 95% CI 3.1-14.1) N. americanus infection, as was sandy-loam soil around households (moderate-intensity ARR 2.1; 95% CI 1.0-4.3; heavy-intensity ARR 2.7; 95% CI 1.6-4.5; compared to no infection). For Ascaris, alkaline soil around the household was associated with reduced risk of moderate-intensity infection (ARR 0.21; 95% CI 0.09-0.51), and heavy-intensity infection (ARR 0.04; 95% CI 0.01-0.25). Few WASH risk factors were significant. CONCLUSION: In this high-prevalence setting, strong risk associations with environmental factors indicate that anthelmintic treatment alone will be insufficient to interrupt STH transmission, as conditions are favourable for ongoing environmental transmission. Integrated STH control strategies should be explored as a priority.

Water, sanitation and hygiene related risk factors for soil-transmitted helminth and Giardia duodenalis infections in rural communities in Timor-Leste.

There is little evidence on prevalence or risk factors for soil transmitted helminth infections in Timor-Leste. This study describes the epidemiology, water, sanitation and hygiene, and socioeconomic risk factors of STH and intestinal protozoa amongst communities in Manufahi District, Timor-Leste. As part of a cluster randomised controlled trial, a baseline cross-sectional survey was conducted across 18 villages, with data from six additional villages. Stool samples were assessed for soil transmitted helminth and protozoal infections using quantitative PCR (qPCR) and questionnaires administered to collect water, sanitation and hygiene and socioeconomic data. Risk factors for infection were assessed using multivariable mixed-effects logistic regression, stratified by age group (preschool, school-aged and adult). Overall, soil transmitted helminth prevalence was 69% (95% Confidence Interval 67-71%), with Necator americanus being most common (60%; 95% Confidence Interval 58-62%) followed by Ascaris spp. (24%; 95% Confidence Interval 23-26%). Ascaris-N. americanus co-infection was common (17%; 95% Confidence Interval 15%-18%). Giardia duodenalis was the main protozoan identified (13%; 95% Confidence Interval 11-14%). Baseline water, sanitation and hygiene infrastructure and behaviours were poor. Although risk factors varied by age of participants and parasite species, risk factors for N. americanus infection included, generally, age in years, male sex, and socioeconomic quintile. Risk factors for Ascaris included age in years for children, and piped water to the yard for adults. In this first known assessment of community-based prevalence and associated risk factors in Timor-Leste, soil transmitted helminth infections were highly prevalent, indicating a need for soil transmitted helminth control. Few associations with water, sanitation and hygiene were evident, despite water, sanitation and hygiene being generally poor. In our water, sanitation and hygiene we will investigate implications of improving WASH on soil transmitted helminth infection in impoverished communities.

Psychological distress in carers of Aboriginal children in urban New South Wales: findings from SEARCH (phase one).

OBJECTIVE: To examine the factors associated with psychological distress in parents and carers of Aboriginal children living in urban communities in New South Wales. DESIGN: Cross-sectional survey (phase one of the Study of Environment on Aboriginal Resilience and Child Health [SEARCH], November 2007 - December 2011). SETTING AND PARTICIPANTS: Primary care; 589 parents and carers of Aboriginal children were recruited when attending one of the four Aboriginal Community Controlled Health Services (ACCHSs) in urban NSW that participated in SEARCH. MAIN OUTCOME MEASURE: Kessler Psychological Distress Scale (K10) scores; a score of 22 or higher was deemed to indicate high levels of psychological distress. RESULTS: High levels of psychological distress were identified in 18% of our sample. The factors most strongly associated with this distress were functional limitations (v those with K10 scores under 22: adjusted odds ratio [aOR], 4.2; 95% CI, 1.3-13.5), previous hospitalisation (aOR, 5.5; 95% CI, 1.5-19.4) or other treatment for social and emotional wellbeing (aOR, 3.3; 95% CI, 1.3-8.4), low satisfaction with feeling part of the community (aOR, 0.83; 95% CI, 0.70-0.98) and low involvement in clubs and groups (aOR, 2.9; 95% CI, 1.2-7.3). CONCLUSIONS: Clinicians should note that those with functional limitations or a history of treatment for mental health problems are at higher risk of psychological distress and may require additional support. Increased funding that allows ACCHSs to provide mental health services, and funding and promoting programs and activities that increase social connectedness should remain focuses for ACCHSs and policy makers.

Prevalence and correlates of the unmet supportive care needs of individuals diagnosed with a haematological malignancy.

BACKGROUND: Information about the unmet supportive care needs of haematological cancer patients is needed for service planning and to inform clinical practice. This study described the prevalence of, and factors associated with, unmet supportive care needs among haematological cancer patients. MATERIAL AND METHODS: A total of 380 adults diagnosed with haematological cancer were recruited from the outpatient department at three comprehensive cancer treatment centres in Australia. Of these, 311 completed a self-report questionnaire. Unmet needs were assessed using the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using descriptive statistics and logistic regression. RESULTS: Overall, 51% (95% CI 45-57%) of participants reported having at least one 'moderate to high' level unmet need, while 25% (95% CI 20-30%) reported 'no need' for help with any items. Unmet needs were most commonly reported in the psychological (35%; 95% CI 30-41%) and physical aspects of daily living (35%; 95% CI 30-41%) domains. The three most frequently endorsed items of 'moderate to high' unmet need were: lack of energy/tiredness (24%; 95% CI 20-30%), not being able to do the things you used to do (21%; 95% CI 17-26%), and uncertainty about the future (21%; 95% CI 16-25%). Patients' sociodemographic characteristics influenced unmet needs more than disease characteristics. Patients who were female, aged less than 55 years or not in the labour force had higher odds of reporting 'moderate to high' level unmet supportive care needs. CONCLUSION: Unmet supportive care needs are prevalent among haematological cancer patients, particularly in the psychological and physical aspects of daily living domains. These findings provide valuable insight about the range of resources, multidisciplinary linkages and referral pathways needed to address haematological cancer patients' unmet needs.

Mental health service use: is there a difference between rural and non-rural women in service uptake?

This study examines differences in uptake of the Medicare items rolled out in 2006 under the 'Better Access Scheme' (BAS) between rural and non-rural Australian women. It compares differences in women's uptake of the BAS services by area of residence (ARIA+) across time using the Australian Longitudinal Study of Women's Health (ALSWH) survey data linked to Medicare data. Women aged 28-33 years at the time the BAS was introduced that responded to the self-reported question on depression/anxiety and consented to linkage of their survey data with Medicare data (n=4,316). Participants were grouped by ARIA+ according to BAS use, diagnoses of anxiety/depression but no BAS use and other eligible women. Across all areas, women born 1973-1978 with a self-reported diagnosis of depression/anxiety or having treatment under the BAS had a significantly lower mean mental health score compared to other women. Significantly more women living in non-rural areas had used at least one service provided under the BAS initiative compared to women in outer regional, inner regional or remotes areas (21% versus 18% versus 13% versus 7%, respectively), and across all areas, 12% of women reported having a diagnosis of depression/anxiety but not been treated under the BAS. While there is a gradual uptake of the new BAS services, a large percentage of women who have a diagnosis of depression/anxiety have not been treated under the BAS. The data suggest that women in urban areas have been better able to take up the services compared to non-urban women.

Thrombolysis ImPlementation in Stroke (TIPS): evaluating the effectiveness of a strategy to increase the adoption of best evidence practice--protocol for a cluster randomised controlled trial in acute stroke care.

BACKGROUND: Stroke is a leading cause of death and disability internationally. One of the three effective interventions in the acute phase of stroke care is thrombolytic therapy with tissue plasminogen activator (tPA), if given within 4.5 hours of onset to appropriate cases of ischaemic stroke. OBJECTIVES: To test the effectiveness of a multi-component multidisciplinary collaborative approach compared to usual care as a strategy for increasing thrombolysis rates for all stroke patients at intervention hospitals, while maintaining accepted benchmarks for low rates of intracranial haemorrhage and high rates of functional outcomes for both groups at three months. METHODS AND DESIGN: A cluster randomised controlled trial of 20 hospitals across 3 Australian states with 2 groups: multi- component multidisciplinary collaborative intervention as the experimental group and usual care as the control group. The intervention is based on behavioural theory and analysis of the steps, roles and barriers relating to rapid assessment for thrombolysis eligibility; it involves a comprehensive range of strategies addressing individual-level and system-level change at each site. The primary outcome is the difference in tPA rates between the two groups post-intervention. The secondary outcome is the proportion of tPA treated patients in both groups with good functional outcomes (modified Rankin Score (mRS <2) and the proportion with intracranial haemorrhage (mRS ≥2), compared to international benchmarks. DISCUSSION: TIPS will trial a comprehensive, multi-component and multidisciplinary collaborative approach to improving thrombolysis rates at multiple sites. The trial has the potential to identify methods for optimal care which can be implemented for stroke patients during the acute phase. Study findings will include barriers and solutions to effective thrombolysis implementation and trial outcomes will be published whether significant or not. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry: ACTRN12613000939796.

Evaluation of systems-oriented public health interventions: alternative research designs.

The need to provide sound evidence of the costs and benefits of real-world public health interventions has driven advances in the development and analysis of designs other than the controlled trial in which individuals are randomized to an experimental condition. Attention to methodological quality is of critical importance to ensure that any evaluation can accurately answer three fundamental questions: (a) Has a change occurred, (b) did the change occur as a result of the intervention, and (c) is the degree of change significant? A range of alternatives to the individual randomized controlled trial (RCT) can be used for evaluating such interventions, including the cluster RCT, stepped wedge design, interrupted time series, multiple baseline, and controlled prepost designs. The key features and complexities associated with each of these designs are explored.

Tobacco, alcohol and cannabis use during pregnancy: clustering of risks.

BACKGROUND: Antenatal substance use poses significant risks to the unborn child. We examined use of tobacco, alcohol and cannabis among pregnant Aboriginal and Torres Strait Islander women; and compared characteristics of women by the number of substances reported. METHODS: A cross-sectional survey with 257 pregnant Indigenous women attending antenatal services in two states of Australia. Women self-reported tobacco, alcohol and cannabis use (current use, ever use, changes during pregnancy); age of initiation of each substance; demographic and obstetric characteristics. RESULTS: Nearly half the women (120; 47% (95%CI:40%, 53%) reported no current substance use; 119 reported current tobacco (46%; 95%CI:40%, 53%), 53 (21%; 95%CI:16%, 26%) current alcohol and 38 (15%; 95%CI:11%, 20%) current cannabis use. Among 148 women smoking tobacco at the beginning of pregnancy, 29 (20%; 95%CI:14%, 27%) reported quitting; with 80 of 133 (60%; 95%CI:51%, 69%) women quitting alcohol and 25 of 63 (40%; 95%CI:28%, 53%) women quitting cannabis. Among 137 women reporting current substance use, 77 (56%; 95%CI:47%, 65%) reported one and 60 (44%; 95%CI:35%, 53%) reported two or three. Women using any one substance were significantly more likely to also use others. Factors independently associated with current use of multiple substances were years of schooling and age of initiating tobacco. CONCLUSIONS: While many women discontinue substance use when becoming pregnant, there is clustering of risk among a small group of disadvantaged women. Programmes should address risks holistically within the social realities of women's lives rather than focusing on individual tobacco smoking. Preventing uptake of substance use is critical.

Prevalence and predictors of the short-term trajectory of anxiety and depression in the first year after a cancer diagnosis: a population-based longitudinal study.

PURPOSE: Few studies have examined psychological adjustment for cancer survivors in late treatment and early survivorship stages. Our study investigated the prevalence and short-term trajectories of anxiety, depression, and comorbid anxiety-depression among adult cancer survivors, and identified the individual, disease, health behavior, psychological, and social predictors of chronic and late psychological morbidity. METHODS: A heterogeneous sample of adult cancer survivors was recruited from two state-based cancer registries. A total of 1,154 survivors completed self-report questionnaires at 6 (Time 1) and 12 months (Time 2) postdiagnosis. Anxiety and depression were assessed by the Hospital Anxiety and Depression Scale with cases identified by a subscale cutoff score ≥ 8. Logistic regression analyses identified Time 1 characteristics associated with anxiety and/or depression at Time 2. RESULTS: The point prevalence of anxiety (Time 1, 22%; Time 2, 21%), depression (13% at both timepoints) and comorbid anxiety-depression (9% at both timepoints) was similar at 6 and 12 months postdiagnosis. The most prevalent Time 1 to Time 2 trajectory was noncase for anxiety (70%), depression (82%), and comorbid anxiety-depression (87%). While psychological morbidity at Time 1 was the strongest predictor of psychological morbidity at Time 2, being diagnosed with lung cancer and health risk behaviors (smoking, insufficient physical activity) were also strong predictors. CONCLUSION: Targeted psychological screening of vulnerable survivors and early intervention may prevent the onset and/or reduce the severity of psychological morbidity in early survivorship. Trials of risk reduction interventions targeting psychological functioning and health risk behaviors seem warranted.

Do we get it right? Radiation oncology outpatients' perceptions of the patient centredness of life expectancy disclosure.

OBJECTIVE: A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients' preferences for, and perceived experiences of, life expectancy disclosure. METHODS: Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences. RESULTS: Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was -0.04 (95% CI, -0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure (p = 0.74). CONCLUSIONS: In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure.

Radiation oncology outpatient perceptions of patient-centred care: a cross-sectional survey.

OBJECTIVES: We aimed to describe the proportion and characteristics of cancer patients who perceived that better care would have greatly improved their well-being in (1) specific and (2) multiple domains of patient-centred care. DESIGN: Cross-sectional touchscreen computer survey. SETTING: Four Australian radiation therapy departments located within major urban public hospitals. PARTICIPANTS: Radiation therapy outpatients were invited to participate in a touchscreen computer survey. Eligible patients were at least 18 years old, diagnosed with cancer and had sufficient English to complete the survey. PRIMARY OUTCOME MEASURE: Participants were asked whether their well-being could have been greatly improved if better care had been provided across eight domains of patient-centred care. Characteristics of those respondents who identified (1) specific and (2) multiple domains where it was perceived that better care would have greatly improved their well-being were examined. RESULTS: Of 508 eligible radiation therapy patients, 344 (68%) completed the survey. Patients most frequently perceived that better care in the following domains could have improved their well-being: information and communication about their cancer (22%; 95% CI 18% to 27%); emotional and spiritual support (22%; 95% CI 18% to 27%); management of physical symptoms (21%; 95% CI 17% to 26%) and involvement of friends and family (21%; 95% CI 17% to 26%). Just under one-third of respondents (31%; 95% CI 26% to 36%) indicated that their well-being could have been improved by better care across two or more domains of care. Patients in younger age groups and migrants to Australia had higher odds of endorsing multiple domains where better care would have improved their well-being. CONCLUSIONS: Further investigation of patients' perceptions of how their perceived quality of care might be improved is warranted, particularly among patients in younger age groups and migrants to Australia.

Format and readability of an enhanced invitation letter did not affect participation rates in a cancer registry-based study: a randomized controlled trial.

OBJECTIVES: To assess the effectiveness of an "enhanced" invitation letter in increasing participation in an Australian cancer registry-based study and assess the representativeness of the study sample. STUDY DESIGN AND SETTING: Eight hundred hematological cancer survivors, diagnosed within the last 3 years and aged 18-80 years at recruitment, were selected from one Australian state-based cancer registry. Half were randomly allocated to receive the standard invitation letter (control group). The remaining half received a modified invitation letter, incorporating content and design characteristics recommended to improve written communication (intervention group). RESULTS: Of the 732 eligible survivors, 268 (37%) returned a completed survey. There was no difference in participation between the intervention (n = 131, 36%) and control groups (n = 137, 38%; P = 0.53). Participants were representative of the population for characteristics assessed, except for age group at diagnosis. Survivors 50 years or older at diagnosis had higher odds of returning a completed survey, 50-59 (odds ratio [OR]: 2.53; 95% confidence interval [CI]: 1.47, 4.35), 60-69 (OR: 2.69; 95% CI: 1.58-4.58), and 70-80 (OR: 1.90; 95% CI: 1.07-3.35), than survivors aged 15-39 years at diagnosis. CONCLUSION: An enhanced invitation letter was not effective in increasing participation of hematological cancer survivors in an Australian cancer registry study. The study sample was moderately representative on variables assessed, with age group at diagnosis the only variable associated with participation. Research should evaluate strategies to increase participation in registry studies and focus on tailoring techniques to patient's age.

Factors associated with antenatal smoking among Aboriginal and Torres Strait Islander women in two jurisdictions.

INTRODUCTION AND AIMS: Smoking rates are three times as high for pregnant Indigenous women relative to non-Indigenous women, in Australia. This paper describes Indigenous women's self-reported antenatal smoking behaviour and compares knowledge and attitudes of those who: (i) smoke and don't smoke during pregnancy; and (ii) quit or continued to smoke since the beginning of pregnancy. DESIGN AND METHODS: Cross-sectional surveys with 264 pregnant Indigenous women in two states collected data on smoking status, antenatal changes, risk knowledge, attitudes to smoking and sociodemographic characteristics. Multivariable logistic regression analyses assessed associations between knowledge and attitude variables and smoking status and antenatal changes in smoking status. RESULTS: Forty-six per cent of the women (n = 121) reported currently smoking. The majority (68%) who smoked at the beginning of pregnancy reported quitting (21%) or reducing (47%). Relative to smokers, non-smokers had more schooling (P = 0.002), more post-secondary education (P = 0.023), lower parity (P = 0.003), better understanding of smoking-related risks (miscarriage P = 0.01; low birth weight P = 0.003; infant illness P < 0.001; childhood behavioural problems P = 0.007), and less frequently expressed attitudes indicating that quitting was very difficult given other problems they faced. Similar patterns were found for women who quit during pregnancy compared to those who continued smoking. DISCUSSION AND CONCLUSIONS: Increasing awareness of antenatal smoking risks and the benefits of quitting may motivate women to attempt to quit. However, knowledge alone is unlikely to be sufficient considering the life circumstances of many Indigenous women. Addressing the social environment and daily stressors, particularly those exacerbated by pregnancy, may be critical to supporting quit attempts.

Knowledge, attitudes and other factors associated with assessment of tobacco smoking among pregnant Aboriginal women by health care providers: a cross-sectional survey.

BACKGROUND: As with many Indigenous peoples, smoking rates among Aboriginal Australians are considerably higher than those of the non-Indigenous population. Approximately 50% of Indigenous women smoke during pregnancy, a time when women are more motivated to quit. Antenatal care providers are potentially important change agents for reducing the harms associated with smoking, yet little is known about their knowledge, attitudes or skills, or the factors associated with providing smoking cessation advice. METHODS: This paper aimed to explore the knowledge and attitudes of health care providers caring for pregnant Australian Aboriginal women with regard to smoking risks and cessation; and to identify factors associated with self-reported assessment of smoking. A cross-sectional survey was undertaken with 127 staff providing antenatal care to Aboriginal women from two jurisdictions: the Northern Territory and New South Wales, Australia. Measures included respondents' estimate of the prevalence of smoking among pregnant women; optimal and actual assessment of smoking status; knowledge of risks associated with antenatal smoking; knowledge of smoking cessation; attitudes to providing cessation advice to pregnant women; and perceived barriers and motivators for cessation for pregnant women. RESULTS: The median provider estimate of the smoking prevalence was 69% (95%CI: 60,70). The majority of respondents considered assessment of smoking status to be integral to antenatal care and a professional responsibility. Most (79%) indicated that they assess smoking status in 100% of clients. Knowledge of risks was generally good, but knowledge of cessation was poor. Factors independently associated with assessing smoking status among all women were: employer service type (p = 0.025); cessation knowledge score (p = 0.011); and disagreeing with the statement that giving advice is not worth it given the low level of success (p = 0.011). CONCLUSIONS: Addressing knowledge of smoking risks and cessation counselling is a priority and should improve both confidence and ability, and increase the frequency and effectiveness of counselling. The health system must provide supports to providers through appropriate policy and resourcing, to enable them to address this issue.