The impact of a regionally based translational cancer research collaborative in Australia using the FAIT methodology.

BACKGROUND: Translating research, achieving impact, and assessing impact are important aspirations for all research collaboratives but can prove challenging. The Hunter Cancer Research Alliance (HCRA) was funded from 2014 to 2021 to enhance capacity and productivity in cancer research in a regional centre in Australia. This study aimed to assess the impact and benefit of the HCRA to help inform future research investments of this type. METHOD: The Framework to Assess the Impact from Translational health research (FAIT) was selected as the preferred methodology. FAIT incorporates three validated methodologies for assessing impact: 1) Modified Payback; 2) Economic Analysis; and 3) Narrative overview and case studies. All three FAIT methods are underpinned by a Program Logic Model. Data were collected from HCRA and the University of Newcastle administrative records, directly from HCRA members, and website searches. RESULTS: In addition to advancing knowledge and providing capacity building support to members via grants, fellowships, scholarships, training, events and targeted translation support, key impacts of HCRA-member research teams included: (i) the establishment of a regional biobank that has distributed over 13,600 samples and became largely self-sustaining; (ii) conservatively leveraging $43.8 M (s.a.$20.5 M - $160.5 M) in funding and support from the initial $9.7 M investment; (iii) contributing to clinical practice guidelines and securing a patent for identification of stem cells for endometrial cell regeneration; (iv) shifting the treatment paradigm for all tumour types that rely on nerve cell innervation, (v) development and implementation of the world's first real-time patient treatment verification system (Watchdog); (vi) inventing the effective 'EAT' psychological intervention to improve nutrition and outcomes in people experiencing radiotherapy for head and neck cancer; (vi) developing effective interventions to reduce smoking rates among priority groups, currently being rolled out to disadvantaged populations in NSW; and (vii) establishing a Consumer Advisory Panel and Consumer Engagement Committee to increase consumer involvement in research. CONCLUSION: Using FAIT methodology, we have demonstrated the significant impact and downstream benefits that can be achieved by the provision of infrastructure-type funding to regional and rural research collaboratives to help address inequities in research activity and health outcomes and demonstrates a positive return on investment.

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 .

Real-time video counselling for smoking cessation.

BACKGROUND: Real-time video communication software such as Skype and FaceTime transmits live video and audio over the Internet, allowing counsellors to provide support to help people quit smoking. There are more than four billion Internet users worldwide, and Internet users can download free video communication software, rendering a video counselling approach both feasible and scalable for helping people to quit smoking. OBJECTIVES: To assess the effectiveness of real-time video counselling delivered individually or to a group in increasing smoking cessation, quit attempts, intervention adherence, satisfaction and therapeutic alliance, and to provide an economic evaluation regarding real-time video counselling. SEARCH METHODS: We searched the Cochrane Tobacco Addiction Group Specialised Register, CENTRAL, MEDLINE, PubMed, PsycINFO and Embase to identify eligible studies on 13 August 2019. We searched the World Health Organization International Clinical Trials Registry Platform and ClinicalTrials.gov to identify ongoing trials registered by 13 August 2019. We checked the reference lists of included articles and contacted smoking cessation researchers for any additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs), randomised trials, cluster RCTs or cluster randomised trials of real-time video counselling for current tobacco smokers from any setting that measured smoking cessation at least six months following baseline. The real-time video counselling intervention could be compared with a no intervention control group or another smoking cessation intervention, or both. DATA COLLECTION AND ANALYSIS: Two authors independently extracted data from included trials, assessed the risk of bias and rated the certainty of the evidence using the GRADE approach. We performed a random-effects meta-analysis for the primary outcome of smoking cessation, using the most stringent measure of smoking cessation measured at the longest follow-up. Analysis was based on the intention-to-treat principle. We considered participants with missing data at follow-up for the primary outcome of smoking cessation to be smokers. MAIN RESULTS: We included two randomised trials with 615 participants. Both studies delivered real-time video counselling for smoking cessation individually, compared with telephone counselling. We judged one study at unclear risk of bias and one study at high risk of bias. There was no statistically significant treatment effect for smoking cessation (using the strictest definition and longest follow-up) across the two included studies when real-time video counselling was compared to telephone counselling (risk ratio (RR) 2.15, 95% confidence interval (CI) 0.38 to 12.04; 2 studies, 608 participants; I2 = 66%). We judged the overall certainty of the evidence for smoking cessation as very low due to methodological limitations, imprecision in the effect estimate reflected by the wide 95% CIs and inconsistency of cessation rates. There were no significant differences between real-time video counselling and telephone counselling reported for number of quit attempts among people who continued to smoke (mean difference (MD) 0.50, 95% CI -0.60 to 1.60; 1 study, 499 participants), mean number of counselling sessions completed (MD -0.20, 95% CI -0.45 to 0.05; 1 study, 566 participants), completion of all sessions (RR 1.13, 95% CI 0.71 to 1.79; 1 study, 43 participants) or therapeutic alliance (MD 1.13, 95% CI -0.24 to 2.50; 1 study, 398 participants). Participants in the video counselling arm were more likely than their telephone counselling counterparts to recommend the programme to a friend or family member (RR 1.06, 95% CI 1.01 to 1.11; 1 study, 398 participants); however, there were no between-group differences on satisfaction score (MD 0.70, 95% CI -1.16 to 2.56; 1 study, 29 participants). AUTHORS' CONCLUSIONS: There is very little evidence about the effectiveness of real-time video counselling for smoking cessation. The existing research does not suggest a difference between video counselling and telephone counselling for assisting people to quit smoking. However, given the very low GRADE rating due to methodological limitations in the design, imprecision of the effect estimate and inconsistency of cessation rates, the smoking cessation results should be interpreted cautiously. High-quality randomised trials comparing real-time video counselling to telephone counselling are needed to increase the confidence of the effect estimate. Furthermore, there is currently no evidence comparing real-time video counselling to a control group. Such research is needed to determine whether video counselling increases smoking cessation.

Unmet supportive care needs of haematological cancer survivors: rural versus urban residents.

Due to fewer cancer services in rural locations, rural survivors may have unique unmet needs compared to urban survivors. This study compared among rural and urban haematological cancer survivors the most common "high/very high" unmet supportive care needs and the unmet need scores for five domains (information, financial concerns, access and continuity of care, relationships and emotional health). Survivors' socio-demographics, rurality, cancer history and psychological factors associated with each unmet need domain were also explored. A total of 1511 haematological cancer survivors were recruited from five Australian state cancer registries and 1417 (1145 urban, 272 rural) allowed extraction of their residential postcode from registry records. A questionnaire that contained the Survivor Unmet Needs Survey was mailed to survivors. Dealing with feeling tired was the most common "high/very high" unmet need for rural (15.2%) and urban (15.5%) survivors. The emotional health domain had the highest mean unmet need score for rural and urban survivors. Rurality was associated with a decreased unmet emotional health domain score whereas travelling for more than 1 h to treatment was associated with increased unmet financial concerns and unmet access and continuity of care. Depression, anxiety and stress were associated with increased unmet need scores for all five domains. Unmet need domain scores generally did not differ by rurality. Travelling for more than 1 h to treatment was associated with increased unmet need scores on two domains. Telemedicine and increased financial assistance with travel and accommodation may help those travelling long distances for treatment.

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.

Experiences of colorectal cancer patients in the 2-years post-diagnosis and patient factors predicting poor outcome.

PURPOSE: There are few recent longitudinal studies investigating the quality of life of colorectal cancer patients in the early years following diagnosis. This study aimed to (i) compare the health status of people with colorectal cancer less than 1 year from diagnosis with health status 1 year later and (ii) determine the characteristics associated with a change in overall health status. METHODS: The study was conducted as part of a larger trial. Participants (n = 539) were identified via the Victorian Cancer Registry in Australia, completed a computer-assisted baseline telephone interview (including the EQ-5D-3L) within 6-12 months of diagnosis, and mailed a survey 12 months later. RESULTS: At baseline, the majority of participants (55 %) reported some problems, including difficulties in usual activities (26 %), pain or discomfort (25 %), anxiety or depression (23 %) and mobility issues (15 %). Sixty-nine percent had either an unchanged or increased health utility score from baseline to follow-up. The largest proportion reporting an increase in problems between baseline and follow-up related to pain or discomfort (18 %). While visual analogue scale scores indicated a significantly improved health state over time overall, 32 % reported a decreased health utility score from baseline to follow-up. Those aged over 80 years were more likely to report a decreased health utility score compared to 60-80-year-olds. CONCLUSIONS: A sizeable minority of patients experience ongoing problems in their daily lives and should be offered assistance in overcoming disabilities and returning to best possible functioning, particularly older patients who appear to be vulnerable to poor outcomes.

Getting right to the point: identifying Australian outpatients' priorities and preferences for patient-centred quality improvement in chronic disease care.

OBJECTIVES: To identify specific actions for patient-centred quality improvement in chronic disease outpatient settings, this study identified patients' general and specific preferences among a comprehensive suite of initiatives for change. DESIGN AND SETTING: A cross-sectional survey was conducted in three hospital-based clinics specializing in oncology, neurology and cardiology care located in New South Wales, Australia. PARTICIPANTS AND MEASURES: Adult English-speaking outpatients completed the touch-screen Consumer Preferences Survey in waiting rooms or treatment areas. Participants selected up to 23 general initiatives that would improve their experience. Using adaptive branching, participants could select an additional 110 detailed initiatives and complete a relative prioritization exercise. RESULTS: A total of 541 individuals completed the survey (71.1% consent, 73.1% completion). Commonly selected general initiatives, presented in order of decreasing priority (along with sample proportion), included: improved parking (60.3%), up-to-date information provision (15.0%), ease of clinic contact (12.9%), access to information at home (12.8%), convenient appointment scheduling (14.2%), reduced wait-times (19.8%) and information on medical emergencies (11.1%). To address these general initiatives, 40 detailed initiatives were selected by respondents. CONCLUSIONS: Initiatives targeting service accessibility and information provision, such as parking and up-to-date information on patient prognoses and progress, were commonly selected and perceived to be of relatively greater priority. Specific preferences included the need for clinics to provide patient-designated parking in close proximity to the clinic, information on treatment progress and test results (potentially in the form of designated brief appointments or via telehealth) and comprehensive and trustworthy lists of information sources to access at home.

Patterns of type 2 diabetes monitoring in rural towns: How does frequency of HbA1c and lipid testing compare with existing guidelines?

OBJECTIVE: To indicate levels of monitoring of type 2 diabetes in rural and regional Australia by examining patterns of glycated haemoglobin (HbA1c) and blood lipid testing. DESIGN AND SETTING: Retrospective analysis of pathology services data from twenty regional and rural towns in eastern Australia over 24 months. PARTICIPANTS: Of 13 105 individuals who had either a single HbA1c result ≥7.0% (53 mmol mol-1 ); or two or more HbA1c tests within the study period. MAIN OUTCOME MEASURES: Frequency of testing of HbA1c and blood lipids (cholesterol, low-density lipoprotein (LDL) cholesterol, high-density lipoprotein (HDL) cholesterol and triglycerides) were compared with guideline recommendations. RESULTS: About 58.3% of patients did not have the recommended 6-monthly HbA1c tests and 30.6% did not have annual lipid testing. For those who did not receive tests at the recommended interval, the mean between-test interval was 10.5 months (95% CI = 7.5-13.5) rather than 6 months for HbA1c testing; and 15.7 (95% CI = 13.3-18.1) months rather than annually for blood lipids. For those with at least one out-of-range test result, 77% of patients failed to receive a follow-up HbA1c test and 86.5% failed to receive a follow-up blood lipid test within the recommended 3 months. Patients less than 50 years of age, living in a more remote area and with poor diabetes control were less likely to have testing at the recommended intervals (P < 0.0001). CONCLUSIONS: Although poor diabetes testing is not limited to rural areas, more intensive diabetes monitoring is likely to be needed for patients living in non-metropolitan areas, particularly for some subgroups.

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 barriers to optimal outpatient specialist services for individuals with prevalent chronic diseases: what are the unique and common barriers experienced by patients in high income countries?

Health utilization and need assessment data suggest there is considerable variation in access to outpatient specialist care. However, it is unclear if the types of barriers experienced are specific to chronic disease groups or experienced universally. This systematic review provides a detailed summary of common and unique barriers experienced by chronic disease groups when accessing and receiving care, and a synthesized list of possible health service initiatives to improve equitable delivery of optimal care in high-income countries. Quantitative articles describing barriers to specialist outpatient services were retrieved from CINAHL, MEDLINE, Embase, and PyscINFO. To be eligible for review, studies: were published from 2002 to May 2014; included samples with cancer, diabetes mellitus, osteoporosis, arthritis, ischaemic heart disease, stroke, asthma, chronic pulmonary disorder (COPD) or depression; and, were conducted in high-income countries. Using a previously validated model of access (Penchansky and Thomas' model of fit), barriers were grouped according to five overarching domains and defined in more detail using 33 medical subject headings. Results from reviewed articles, including the scope and frequency of reported barriers, are conceptualized using thematic analysis and framed as possible health service initiatives. A total of 3181 unique records were screened for eligibility, of which 74 studies were included in final analysis. The largest proportion of studies reported acceptability barriers (75.7 %), of which demographic disparities (44.6 %) were reported across all diseases. Other frequently reported barriers included inadequate need assessment (25.7 %), information provision (32.4 %), or health communication (20 %). Unique barriers were identified for oncology, mental health, and COPD samples. Based on the scope, frequency and measurement of reported barriers, eight key themes with associated implications for health services are presented. Examples include: common accommodation and accessibility barriers caused on service organization or physical structure, such as parking and appointment scheduling; common barriers created by poor coordination of care within the healthcare team; and unique barriers resulting from inadequate need assessment and referral practices. Consideration of barriers, across and within chronic diseases, suggests a number of specific initiatives are likely to improve the delivery of patient-centered care and increase equity in access to high-quality health services.

A cross-sectional survey and latent class analysis of the prevalence and clustering of health risk factors among people attending an Aboriginal Community Controlled Health Service.

BACKGROUND: Indigenous Australians are a socially disadvantaged group who experience significantly poorer health and a higher prevalence of modifiable health behaviours than other Australians. Little is known about the clustering of health risks among Indigenous Australians. The aims of this study were to describe the clustering of key health risk factors, such as smoking, physical inactivity and alcohol consumption, and socio-demographics associated with clusters, among a predominantly Aboriginal sample. METHODS: Participants (n = 377) attending an Aboriginal Community Controlled Health Service (ACCHS) in regional/rural New South Wales, Australia, in 2012-2013 completed a self-report touch screen health risk survey. Clusters were identified using latent class analysis. RESULTS: Cluster 1 ('low fruit/vegetable intake, lower risk'; 51%) consisted of older men and women; Cluster 2 ('risk taking'; 22%) included younger unemployed males with a high prevalence of smoking, risky alcohol, and illicit drug use. Cluster 3 ('inactive, overweight, depressed'; 28%) was characterised by younger to mid aged women likely to have experienced emotional or physical violence. CONCLUSIONS: If future research identifies similar stable clusters of health behaviours for this population, intervention approaches targeting these clusters of risk factors should be developed and tested for Aboriginal and Torres Strait Islander Australians.

Targeting multiple health risk behaviours among vocational education students using electronic feedback and online and telephone support: protocol for a cluster randomised trial.

BACKGROUND: Technical and Further Education (TAFE) colleges are the primary provider of vocational education in Australia. Most TAFE students are young adults, a period when health risk behaviours become established. Furthermore, high rates of smoking, risky alcohol consumption, inadequate fruit and vegetable intake and insufficient physical activity have been reported in TAFE students. There have been no intervention studies targeting multiple health risk behaviours simultaneously in this population. The proposed trial will examine the effectiveness of providing TAFE students with electronic feedback regarding health risk behaviours and referral to a suite of existing online and telephone services addressing smoking, risky alcohol consumption, fruit and vegetable intake, and physical activity levels. METHODS/DESIGN: A two arm, parallel, cluster randomised trial will be conducted within TAFE campuses in New South Wales (NSW), Australia. TAFE classes will be randomly allocated to an intervention or control condition (50 classes per condition). To be eligible, students must be: enrolled in a course that runs for more than 6 months; aged 16 years or older; and not meet Australian health guideline recommendations for at least one of the following: smoking, alcohol consumption, fruit and/or vegetable intake, or physical activity. Students attending intervention classes, will undertake via a computer tablet a risk assessment for health risk behaviours, and for behaviours not meeting Australian guidelines be provided with electronic feedback about these behaviours and referral to evidence-based online programs and telephone services. Students in control classes will not receive any intervention. Primary outcome measures that will be assessed via online surveys at baseline and 6 months post-recruitment are: 1) daily tobacco smoking; 2) standard drinks of alcohol consumed per week; 3) serves of fruit consumed daily; 4) serves of vegetables consumed daily; and 5) metabolic equivalent minutes of physical activity per week. DISCUSSION: Proactive enrolment to existing online and telephone services has the potential to address modifiable determinants of disease. This trial will be the first to examine a potentially scalable intervention targeting multiple health risk behaviours among students in the vocational training setting. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12615000105549; Registered 5/2/15.

Prevalence of FOB testing in eastern-Australian general practice patients: what has a national bowel cancer screening program delivered?

ISSUES ADDRESSED: The National Bowel Cancer Screening Program (NBCSP) was introduced in Australia in 2006, offering free immunochemical Faecal Occult Blood Test (FOBT) to persons aged 50, 55 or 65. The study aimed to examine the prevalence of self-reported screening for colorectal cancer (CRC) using the FOBT and factors associated with not having an FOBT. METHODS: A cross-sectional study of Australian general practice patients aged 50 and over with no personal history of CRC completed a health risk survey while waiting for scheduled appointments between November 2010 and November 2011. RESULTS: A total of 5671 patients from 12 practices were approached to participate. Of the 4707 eligible patients (adults attending for care who understood English and were capable of providing informed consent), 4062 (86%) consented to participate, with 2269 eligible to complete the FOBT items. Approximately half (52%) of participants reported ever having an FOBT. More than one-third (39.7%) of the sample reported having an FOBT in the prior three years. Those who recalled receiving a mailed kit as part of the NBCSP were five times more likely to report being screened. Those less likely to report screening were aged 50-59 years, were female and had been diagnosed with a form of cancer other than CRC. CONCLUSIONS: There is justification for the extension of the NBCSP to ensure a majority of the age-appropriate population is screened for CRC. SO WHAT?: Further work is needed to identify whether high rates of screening are achievable using the mailed-kit approach, and how to increase participation by females, those aged 50-69 years and those diagnosed with other cancers.

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.

Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care.

BACKGROUND: The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support-relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures. METHODS: Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation. RESULTS: Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability. CONCLUSIONS: There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.