Sue Evans

• Doctor of Philosophy
• Head Victorian Cancer Registry Division at Cancer Council Victoria

Background Cancer stage is important to capture within population-based cancer registries (PBCRs) to facilitate recruitment to clinical trials, evaluate prevention programs, assess treatment impact, and forecast cancer service needs. However, capture of cancer stage at diagnosis in many PBCRs is low, stemming from missing data in cancer registratio...

Background Despite access to universal health care, Aboriginal and Torres Strait Islander females (hereafter respectfully referred to as Aboriginal) in Australia have higher breast cancer incidence and mortality rates. We investigated the factors contributing to these survival disparities. Methods Aboriginal females (n = 395; 0.7%) and non-Aborigi...

Introduction Men with prostate cancer (PCa) and their support providers face challenges in accessing high‐quality, impartial information tailored to their specific needs to enhance their overall care and decision‐making. We describe the development, piloting and evaluation of the co‐designed web portal ‘BroSupPORT’. Methods IT teams developed and...

PURPOSE Enhancing the speed and efficiency of clinical trial recruitment is a key objective across international health systems. This study aimed to use artificial intelligence (AI) applied in the Victorian Cancer Registry (VCR), a population-based cancer registry, to assess (1) if VCR received all relevant pathology reports for three clinical tria...

Introduction Stage of pancreatic carcinoma at diagnosis is a strong prognostic indicator of morbidity and mortality, yet is poorly notified to population-based cancer registries (”cancer registries”). Registry-derived stage (RD-Stage) provides a method for cancer registries to use available data sources to compile and record stage in a consistent w...

Background Capture of cancer stage at diagnosis is important yet poorly reported by health services to population-based cancer registries. In this paper we describe current completeness of stage information for endometrial cancer available in Australian cancer registries; and develop and validate a set of rules to enable cancer registry medical cod...

Women diagnosed with melanoma have better survival than men, but little is known about potential intervention targets to reduce this survival gap by sex. We conducted a population‐based study using Victorian Cancer Registry data including 5833 women and 6780 men aged 15 to 70 years when diagnosed with first primary melanoma between 2007 and 2015. D...

Objectives To identify and explore barriers to, and enablers of, active surveillance (AS) in men with low‐risk prostate cancer (LRPCa), as perceived by PCa clinicians. Patients and Methods Urologists and radiation oncologists in Australia and New Zealand were purposively sampled for a cross‐section on gender and practice setting (metropolitan/regi...

Return to work (RTW) is a marker of functional recovery for working-age cancer survivors. Identifying factors that impact on RTW in cancer survivors is an essential step to guide further research and interventions to support RTW. This systematic review aimed to identify nontreatment, non-cancer-related variables impacting RTW in Australian cancer s...

Purpose Despite the benefits of palliative care (PC) in pancreatic cancer, little is known about patients who access PC. This observational study examines the characteristics of patients with pancreatic cancer at their first episode of PC. Methods First-time, specialist PC episodes captured through the Palliative Care Outcomes Collaboration (PCOC)...

Background Registry-derived stage (RD-Stage) provides a mechanism to capture cancer stage at diagnosis from routinely captured data available to population-based cancer registries (PBCRs). In 2021, a project was undertaken to develop business rules to capture RD-Stage for endometrial cancer, understand current capacity to capture this information a...

Introduction Variations in access to palliative care (PC) in pancreatic cancer is poorly understood. We aimed to understand the health status of pancreatic cancer patients when presenting to PC. Methods PC users diagnosed with pancreatic cancer in Victoria, Australia between 2014–2020 were identified through the Palliative Care Outcomes Collaborat...

Given the high incidence of melanoma in Australia alongside high mortality with later stage disease, we investigated the populations and locations most at risk, to optimise public health activities in areas where intervention is most needed. This study examines trends and identifies significant prognostic factors and potential disparities in incide...

Introduction Australia has the highest incidence of melanoma in the world with variable care provided by a diverse range of clinicians. Clinical quality registries aim to identify these variations in care and provide anonymised, benchmarked feedback to clinicians and institutions to improve patient outcomes. The Australian Melanoma Clinical Outcome...

Introduction Lung cancer is the leading cause of cancer mortality, comprising the largest national cancer disease burden in Australia and New Zealand. Regional reports identify substantial evidence-practice gaps, unwarranted variation from best practice, and variation in processes and outcomes of care between treating centres. The Australia and New...

Purpose To examine how socio-demographic, comorbidities and information needs influence quality of life (QoL) outcomes of survivors of breast, colorectal, or prostate cancer, non-Hodgkin lymphoma or melanoma. Methods Cross-sectional postal survey with eligible participants identified through a population-based cancer registry. QoL outcomes were as...

Background Leukaemias comprise a heterogenous group of haematological malignancies. In CONCORD-3, we analysed data for children (aged 0–14 years) and adults (aged 15–99 years) diagnosed with a haematological malignancy during 2000–14 in 61 countries. Here, we aimed to examine worldwide trends in survival from leukaemia, by age and morphology, in yo...

Background Prostate cancer is the most common internal malignancy in Australian men, and although most patients have good survival outcomes, treatment toxicities can impair function, leading to diminished quality of life for prostate cancer survivors. Socioeconomic disadvantage and geographical remoteness have been shown to be related to worse onco...

Background: The global burden of pancreatic cancer has steadily increased, while the prognosis after pancreatic cancer diagnosis remains poor. This study aims to compare the stage- and age-specific pancreatic cancer net survival (NS) for seven high-income countries: Australia, Canada, Denmark, Ireland, New Zealand, Norway, and United Kingdom. Met...

Background Pancreatic and oesophagogastric (OG) cancers have a dismal prognosis and high symptom burden, with supportive care forming an integral component of the care provided to patients. This study aimed to explore the supportive care experiences of patients and caregivers living with pancreatic and OG cancers in order to identify perceived oppo...

Introduction: Pancreatic cancer (PC) has a dismal prognosis, with identified disparities in survival outcomes based on demographic characteristics. These disparities may be ameliorated by equitable access to treatments and health services. This systematic review identifies patient and service-level characteristics associated with PC health service...

Background Robot-assisted radical prostatectomy (RARP) rates have been increasing worldwide despite a lack of evidence of superior patient-reported outcomes (PROs) compared to open radical prostatectomy (ORP). Methods This retrospective study included men who contributed data to the Prostate Cancer Outcomes Registry-Victoria (PCOR-Vic), underwent...

Background Pancreatic ductal adenocarcinoma (PDAC) has poor survival. Current treatments offer little likelihood of cure or long-term survival. This systematic review evaluates prognostic models predicting overall survival in patients diagnosed with PDAC. Methods We conducted a comprehensive search of eight electronic databases from their date of...

Background: There is variation in the care provided to men with metastatic prostate cancer (mPCa). There has been no previous set of quality indicators (QIs) regarding the management of men with mPCa. The objective of this study is to develop a set of international mPCa-specific QIs, which will enable global benchmarking of quality of care. Mater...

Objectives To perform a systematic review and meta‐analysis of the literature to understand the variation in the reporting of neuroendocrine staining and determine the influence of reporting neuroendocrine staining at diagnosis on patient outcomes. Methods Medical databases were searched to identify studies in which adenocarcinoma specimens were s...

It is well recognized that randomized controlled trials (RCTs) are a powerful tool to investigate causal relationships, and are considered the gold standard level of research evidence. However, RCTs can be expensive and time-consuming, and when they employ strict eligibility criteria, it results in an unrepresentative population and limited externa...

Background: This study: (i) assessed compliance with a consensus set of quality indicators (QIs) in pancreatic cancer (PC); and (ii) evaluated the association between compliance with these QIs and survival. Methods: Four years of data were collected for patients diagnosed with PC. Cox proportional hazards models were used to estimate hazard rati...

Objective: Feeling depressed and lethargic are common side effects of prostate cancer (PCa) and its treatments. We examined the incidence and severity of feeling depressed and lack of energy in patients in a population based PCa registry. Methods: We included men diagnosed with PCa between 2015 and 2019 in Victoria, Australia, and enrolled in th...

Background National cardiac registries are increasingly used for informing health policy, improving the quality and cost-effectiveness of patient care, clinical research, and monitoring the safety of novel treatments. However, the quality of registries is variable. We aimed to assess the characteristics and quality of national cardiac registries ac...

Background Linked, population-level data is valuable for mapping patterns of care and evaluating health service utilisation, particularly in difficult-to-reach populations. Upper gastrointestinal (UGI) cancers have a dismal prognosis, creating difficulties engaging patients in research. The utility of a linked dataset in this population is of high...

Objective Treatment delays in prostate cancer have been characterised, although not explicitly in men undergoing transperineal prostate biopsies. We aimed to determine if delays to radical prostatectomy correlate with adverse outcomes using a contemporary population-based cohort of men diagnosed by transperineal biopsy. Methods This study analysed...

Background The Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designi...

Background Docetaxel has emerged as a standard‐of‐care for metastatic hormone‐sensitive prostate cancer (mHSPC). Uptake of docetaxel for mHSPC in Australia has not previously been reported. Aims i) To investigate the real‐world uptake of docetaxel in mHSPC; and ii) To identify predictors of utilisation of Docetaxel in mHSPC. Methods Men diagnosed...

Quality of care is defined by a range of dimensions (safe, effective, efficient, timely, patient-centred and equitable care) and components (structure, process, outcome). From a clinical perspective, quality of care is measured through the development of core-sets of quality indicators that is based on current evidence and best practice. In additio...

Objectives The objective of this study was to evaluate geographical and temporal variations in prostate cancer incidence in Victoria, Australia. Study design & methods This study analysed 105,349 cases of incident prostate cancer between 1982 and 2016 from the population-based Victorian Cancer Registry. We performed Poisson regression analyses to...

Background Accurate pre-operative imaging plays a vital role in patient selection for surgery and in allocating stage-appropriate therapies to patients diagnosed with pancreatic cancer (PC). This study aims to: (1) understand the current diagnosis and staging practices for PC; and (2) explore the factors (barriers and enablers) that influence the u...

Introduction Nearly one quarter of a million Australian workers experience a work injury annually and make a benefit claim through one of the nation’s eleven workers’ compensation (WC) systems. The total cost to Australian society has most recently been estimated at $61.8 billion or 4.1% of GDP. The disaggregation of legislative responsibility betw...

Background Evidence-based clinical practice guidelines recommend discussion by a multidisciplinary team (MDT) to review and plan the management of patients for a variety of cancers. However, not all patients diagnosed with cancer are presented at an MDT. Objectives (1) To identify the factors (barriers and enablers) influencing presentation of all...

Background: Benchmarking outcomes across settings commonly requires risk-adjustment for co-morbidities that must be derived from extant sources that were designed for other purposes. A question arises as to the extent to which differing available sources for health data will be concordant when inferring the type and severity of co-morbidities, how...

INTRODUCTION AND OBJECTIVE: Men with localized prostate cancer (CaP) face several treatment options. While multinational studies typically focus on variations in CaP incidence and morbidity, limited data have been published on differing treatment patterns across countries. This study investigated variations in treatment patterns and baseline tumor...

Background: The aim of this systematic review is to examine patient-reported outcome measures (PROMs), their attributes and application in patients with pancreatic cancer (PC). Method: A systematic literature search was undertaken of articles published to June 2018 to identify PROMs applied in primary studies in PC. Characteristics of the includ...

Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. Participants It supports four cancer modules: pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first modu...

Objectives Prostate cancer is the second most common cause of cancer-related death in males after lung cancer, imposing a significant burden on the healthcare system in Australia. We propose the use of autoregressive integrated moving average (ARIMA) models in conjunction with population forecasts to provide for robust annual projections of prostat...

Conservative management, specifically with active surveillance (AS), has emerged as the preferred approach for low-risk prostate cancer (LRPC). We evaluated the trend for conservative management (ie, no active treatment within 12 mo of diagnosis) for LRPC in an Australian population-based cohort of men captured in the Prostate Cancer Outcomes Regis...

Introduction Understanding the impact of comorbidity on health outcomes is important given that comorbidities can affect survival, morbidity, service delivery costs and healthcare utilisation. However, little is known about the types of comorbidities affecting specific health outcomes after minor to moderate road trauma. Methods This study involve...

I presented my honours project findings at the USANZ 2019 conference in Brisbane, Australia

PURPOSE To detail the process for importing a defined data set into a centralized global registry via a secure file transfer platform and to understand the barriers to the establishment of a centralized global registry. RESULTS A bespoke solution was developed to allow transmission of data from international local data centers to a centralized repo...

Previous research in Victoria, Australia, found differences in prostate cancer outcomes in regional and metropolitan areas. This investigation of undiagnosed men in regional areas and a metropolitan area of South Australia sought their perspectives on prostate cancer. Our aim was to learn whether men who had not been diagnosed could shed light on w...

Object: To determine the extent and impact of upgrading and downgrading among men who underwent radical prostatectomy (RP) according to new grade groupings and to identify predictors of upgrading from biopsy grade Group I and II, and downgrading to grade Group I, in a community setting. Methods: Study participants included 2279 men with non-meta...

Purpose: To detail the process for importing a defined data set into a centralized global registry via a secure file transfer platform and to understand the barriers to the establishment of a centralized global registry. Results: A bespoke solution was developed to allow transmission of data from international local data centers to a centralized...

Objectives To summarise and evaluate evidence from men who had not been diagnosed with prostate cancer about their perspectives on prostate care and prostate cancer. Design A systematic review of qualitative research, on the perspectives of non-cancerous men regarding prostate cancer prevention and care. Setting A wide range of settings including...

Prevention of cancer-associated thromboembolism (TE) remains a significant clinical challenge and priority world-wide safety initiative. In this prospective non-small cell lung cancer (NSCLC) cohort, longitudinal TE risk profiling (clinical and biomarker) was undertaken to develop risk stratification models for targeted TE prevention. These were co...

Pressure injury (PI) rates are a commonly used indicator of performance of health care facilities, both in acute and subacute settings. However, measuring PI rates in an accurate and reproducible fashion has been challenging. The consequences of poor measurement may include failure to identify poorly performing institutions or incorrect accusations...

Purpose The purpose of the study was to compare completeness, timeliness and cost of patient-reported outcome measures (PROMs) collection using telephone, email and post in men with prostate cancer. Methods A parallel, three-arm randomised controlled equivalence trial. 1168 patients were randomised to telephone (n = 295), postal (n = 388) and emai...

Background Globally, road transport accidents contribute significantly to mortality and burden of disability. Up to 50 million people suffer a transport-related non-fatal injury each year, which often leads to long-term disability. A substantial number of people with minor injuries struggle to recover and little is known about the factors leading t...

Objective: To understand clients’ experiences of the recovery journey through the compensation system and to identify areas and strategies for quality improvement. Methods: A qualitative study of 23 participants with physical or mental disabilities caused by traffic accidents, which occurred, on average, 4 years ago. Purposive sampling of long-term...

Introduction The aim of this study is to evaluate the use of androgen deprivation therapy (ADT) with post‐prostatectomy radiotherapy (PPRT) in a population‐based cohort of Australian men. Methods This is a prospective cohort of men with localised prostate cancer captured in the Prostate Cancer Outcomes Registry Victoria (PCOR‐Vic), who received PP...

Background: Best practise care optimises survival and quality of life in patients with pancreatic cancer (PC), but there is evidence of variability in management and suboptimal care for some patients. Monitoring practise is necessary to underpin improvement initiatives. We aimed to develop a core set of quality indicators that measure quality of c...

Objective To inform the development of a patient-reported outcome measure, the aim of this study was to identify which symptoms and feelings following percutaneous coronary intervention (PCI) are most important to patients. Design Discrete-choice experiment consisting of two hypothetical scenarios of 10 symptoms and feelings (pain or discomfort; s...

Objective To evaluate the different methods of data visualisation and how it affects preference and data interpretation. Design A cross-sectional survey, assessing interpretation and preference for four methods of data presentation, was distributed to participants. Setting Melbourne, Victoria Participants Members of Prostate Cancer Outcome Registry...

Background To update patterns of care for men diagnosed with prostate cancer in Victoria, Australia between 2008 and 2015. Methods From August 2008 to December 2015, 14 025 men diagnosed with prostate cancer were included. These data were obtained from the Prostate Cancer Outcome Registry – Victoria (PCOR‐Vic). Frequencies were used to describe ho...

Background Globally, road transport accidents contribute significantly to mortality and burden of disability. Up to 50 million people suffer a transport-related non-fatal injury each year, which often leads to long-term disability. A substantial number of people with minor injuries struggle to recover and little is known about the factors leading t...

Final search strategy. (PDF)

Objective: To characterise the practice of active surveillance (AS) for men with low risk prostate cancer by examining the characteristics of those who commence AS, the rate of adherence to accepted AS follow-up protocols over 2 years, and factors associated with good adherence. Design, setting: Retrospective cohort study; analysis of data collect...

PurposePatient-reported outcome measures (PROMs) capture health information from the patient’s perspective that can be used when weighing up benefits, risks and costs of treatment. This is important for elective procedures such as those for coronary revascularisation. Patients should be involved in the development of PROMs to accurately capture out...

Background and purpose: Quality indicators (QIs) have been developed for many aspects of prostate cancer care, but are under-developed with regard to radiotherapy treatment. We aimed to develop a valid, relevant and feasible set of core QIs to measure quality of radiotherapy care in men with prostate cancer. Materials and methods: We used a RAND...

1 Aim This study aims to assess characteristics of patients with prostate cancer for whom clinical T stage category (cT) was not documented in the medical record and assess whether specialists had concordant conclusions regarding cT based on digital rectal examination (DRE) notes. 2 Methods Data from the Prostate Cancer Outcome Registry – Victoria...

Purpose: To develop a core set of clinical indicators that enables international benchmarking of localised prostate cancer management using data available in the TrueNTH Global Registry. Materials and methods: An international expert panel completed an online survey and participated in a face-to-face meeting. Participants included urologists (n=...

The healthcare value of Australian clinical quality registries (CQRs) has recently been highlighted by the Australian Commission of Safety and Quality in Health Care (ACSQHC) as being similar to the benefits of CQRs reported internationally. However, the development of CQRs in Australia is currently limited by a lack of coordination and strategic p...

Objectives: To investigate the attributes of Australian clinical quality registries (CQR). Design and setting: Survey of 40 CQRs between September 2015 and April 2016. Participants: CQR lead investigators/project managers. Intervention: None. Main outcome measures: Registry organization, geographical coverage, data quality, management, cha...

Purpose To establish a pilot clinical quality registry (CQR) to monitor the quality of care and device performance for breast device surgery in Australia. Participants All patients having breast device surgery from contributing hospitals in Australia. A literature review was performed which identified quality indicators for breast device surgery....

Introduction: The aim of this study was to evaluate the use of high-dose-rate brachytherapy (HDR-BT) boost with definitive external beam radiotherapy (EBRT) in prostate cancer (CaP) management. Methods: The study population comprised men with intermediate-high risk CaP captured in the population-based Prostate Cancer Outcome Registry Victoria (P...

Introduction: Advance care planning (ACP) is a process between a person, their family/carer(s) and healthcare providers that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The Australian government funds a number of national initiatives aim...

Purpose: This study aimed to evaluate (1) the time interval between a decision to commence on active surveillance (AS) and grade progression in community practice; (2) factors predicting grade progression in localised prostate cancer (CaP) patients apparently undergoing AS. Methods: Data from the Prostate Cancer Outcomes Registry-Victoria were u...

The purpose of this study was to provide in-depth insight into men's experiences of prostate cancer, specifically: perceived stigma and self-blame, social isolation, unmet need and help-seeking. A qualitative descriptive approach was used. Semi-structured interviews were undertaken with 20 men diagnosed with prostate cancer, and thematic analysis w...

Background: Percutaneous coronary intervention (PCI) is a common cardiac procedure used to treat obstructive coronary artery disease. Patient-centred care is a priority in cardiovascular health having been shown to increase patient satisfaction, engagement with rehabilitation activities and reduce anxiety. Evidence indicates that patient-centred c...

Purpose Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Participants Sites with existing CaP databases in Movember f...

Objective: To determine the effects of laparoscopic radical prostatectomy (LRP), or robot-assisted radical prostatectomy (RARP) compared with open radical prostatectomy (ORP) in men with localized prostate cancer. Materials and methods: We performed a comprehensive search using multiple databases (CENTRAL, MEDLINE, EMBASE) and abstract proceedin...

Background Clinical quality registries (CQRs) are playing an increasingly important role in improving health outcomes and reducing health care costs. CQRs are established with the purpose of monitoring quality of care, providing feedback, benchmarking performance, describing pattern of treatment, reducing variation and as a tool for conducting rese...

Study limitations, conclusions and recommendations. (DOCX)

PRISMA 2009 checklist. (DOCX)

Background Clinical quality registries (CQRs) are playing an increasingly important role in improving health outcomes and reducing health care costs. CQRs are established with the purpose of monitoring quality of care, providing feedback, benchmarking performance, describing pattern of treatment, reducing variation and as a tool for conducting rese...