Outcome and Resource Evaluation (CORE) quality assurance and research care resources, patient outcomes, mortality, disease patterns and the effectiveness of critical care interventions. Benchmarking of outcomes and quality of care against comparable units and international standards occurs. The ANZICS Outlier Management Policy specifies the appropriate action required if performance of a unit falls outside expected norms (this includes notification of the relevant jurisdictional health authority). Australian New Zealand Clinical Trials Registry (ANZCTR) Academic institution / research centre National NA Quality of life questionnaires and PROMs used in some trials. The ANZCTR is an online registry of clinical trials being undertaken in Australia, New Zealand and elsewhere. Trial details are provided on this website and can be searched. Trials cover health-related matters and use a wide variety of relevant measurements, including some patient-reported ones such as quality of life measures e.g. RCT to evaluate effectiveness of telephone, mail or email approaches to collecting PROMs data using Prostate Cancer Outcomes Registry-Victoria (PCOR-VIC). Australian Private Hospitals Association (APHA) Peak national body National NA NA Links to the ACSQHC publication ‘On the Radar’ were found, which referenced two articles discussing PROMs (2012/2103). Australian Rheumatology Association (ARA) Peak national body National NA Quality of life measures The ARA is an association of rheumatologists in Australia that is a specialty society of the Royal Australasian College of Physicians. The AIHW note (in 'Assessment of the ARAD for national population health monitoring', 2014) that the ARA Database holds detailed information about patient treatment and outcomes (QOL) over time. Bowel Cancer Australia advocacy organisation National NA Bowel Cancer Australia the ICHOM Standard Set for Colorectal Cancer Reference Guide (a complete overview of the ICHOM Colorectal Cancer Bowel Cancer Australia is a community-funded charity working in prevention, early diagnosis, research, quality treatment and care.
Institute at the University of Wollongong. Royal Australian College of General Practitioners Peak national body National NA NA The RACGP website provided a link to the journal article ‘Quality of care measures in multimorbidity’ (Neurology, 2014, This systematic literature review included ‘patient-rated measures’. New South Wales organisations NSW Ministry of Health Government NSW NA NA The use of PROMs is recommended in the Independent Pricing and Regulatory Tribunal's 'Framework for performance improvement in health' (2008). NSW Health - Agency for Clinical Innovation (ACI) Government NSW Measure program - Part of the NSW Health Integrated Care Program Overview of PROMs and PREMs with a particular focus on the NSW Integrated Care Strategy written by Jack Chen, Simpson Centre for Health Services Research, UNSW. This literature review pointed strongly to PROMIS for the PROMs question sets, for the purposes of the pilot program. PROMIS 10 is used – a validated 10 question generic HRQoL tool. The ACI is responsible for managing the Patient-Reported Measure component of the NSW Health Integrated Care Strategy. The Patient-Reported Measures program is inclusive of up to ten proof-of-concept sites within NSW, working with ACI to implement patient-reported measures as part of business. There are three Integrated Care ‘Demonstrators’ – led by Western Sydney, Central Coast and Western NSW Local Health Districts (LHDs). Also see Chen, Simpson Centre report commissioned by ACI as key resource 'Integrated Care: Patient-reported outcome measures and patient-reported experience measures, a rapid scoping review' for Integrated Care Advisory Committee, NSW Agency for Clinical Innovation. ICHOM has announced a new strategic alliance with the ACI.
and wellbeing and better cancer outcomes. The PRO-SIG aims to provide a forum and focus for discussion of HRQoL/PRO-related issues and methods among Cancer Research Network members. It aims to: - facilitate the development of understanding and expertise in the measurement, analysis, interpretation and application of a broad range of PROs, including HRQoL among CRN members; - foster excellence in methodology for HRQoL/PRO endpoints in the research of CRN members; - foster cross-disciplinary collaborations within the CRN, bridging medical, psychological, behavioural and biostatistical disciplines; - mentor early career researchers from a range of disciplines in various aspects of HRQoL/PRO methodology; and - develop a critical and sustainable mass of HRQoL/PRO expertise within the CRN. The CRN includes some world leaders in various aspects of HRQoL/PRO assessment. Arthroplasty Clinical Outcomes Registry (ACORN) Academic institution / research centre NSW NA Disease specific - Oxford Hip Score and Oxford Knee Score; generic EQ-5D, NHS satisfaction and success items. ACORN was established in 2012 and as of 2014 had 6 participating hospitals in NSW. It aims to improve the quality and effectiveness of arthroplasty surgery, by monitoring, evaluating and reporting clinical outcomes (including generic, disease specific PROMs and satisfaction) and it routinely undertakes a 6 month follow-up of patients following surgery.
Department of Health and Human Services – Victorian Cancer Centre Government VIC Measuring quality of life after cancer The five PROMs questionnaires contained 58 common questions and between 9-24 additional questions, depending on cancer type, drawn from existing validated tools. In 2014, conducted a quality of life survey for people living with and beyond cancer in Victoria in collaboration with the Cancer Council Victoria (CCV) Victorian Cancer Registry (VCR). In 2014, fieldwork was completed for a state-wide PROMs survey, which aimed to assess the quality of life of cancer survivors in Victoria with five different cancer types and at three different time points since diagnosis. The NHS PROMs questionnaires for breast, bowel, prostate cancer and lymphoma were used, and in addition the VCCC developed a fifth questionnaire for survivors of melanoma. Eligible participants were identified and recruited through the Victorian Cancer Registry and the survey data is currently being analysed. The data will be used to assess the contribution that demographics, disease-related and other factors have on quality of life to inform future programs. Department of Health and Human Services – Victorian Comprehensive Cancer Centre Public healthcare provider VIC Patient information will be used to drive initiatives and better models of clinical care. This is part of the VCCC’s commitment to reduce the burden of cancer and ensure patient needs are met. Uses the NHS questionnaire that is cancer specific and spans the care trajectory, from diagnosis and treatment through to follow-up care. Under the Living with Cancer Program, the VCCC have initiated a cancer patient experience survey to track progress in future years. The survey is based on that used in the UK and will allow benchmarking against the UK as a whole and against UK institutions specifically. The study on PROMs will also enable benchmarking and document patient quality of life.
Department of Health and Human Services – Monash Health Public healthcare provider VIC NA Uses PROMs relevant for hip and knee replacements Monash Health Department of Orthopaedics is undertaking a project: Enhanced Recovery after Surgery (ERAS) Program for Hip and Knee Replacements. Tran T; Mutalima N. Outcome: Improvement of management of primary hip and knee replacements leading to better patient pain management, reduced length of stay and improved outcomes. Department of Health and Human Services – Peter MacCallum Cancer Centre Public healthcare provider VIC Program aims to develop, implement and evaluate a pilot model of survivorship care for young people diagnosed with cancer between the ages of 15-25 in Victoria. This project included several PROMs including: AYA Survivorship Screening Tool, AQoL-6D, SF-12 and PEQ. The Survivorship Connections: A Pilot Model of Post Treatment Shared Survivorship Care for Adolescent and Young Adult (AYA) Cancer Patients in Victoria Program aims to develop, implement and evaluate a pilot model of survivorship care for young people diagnosed with cancer between the ages of 15-25 in Victoria. Department of Health and Human Services – The Royal Melbourne Hospital Public healthcare provider VIC To help improve outcomes for Australians with hip and knee joint pain. Hip and knee related PROMs. The HCF Research Foundation is funding the implementation of the ICHOM Standard Set for Hip and Knee Osteoarthritis at Royal Melbourne Hospital.
Monash University (Victorian State Trauma Outcomes Registry Monitoring Group - VSTORM) Academic institution / research centre VIC The aim of the registry is to collect information about all patients from every hospital and health care facility managing trauma patients in Victoria. VSTORM: Adults SF-12, Glasgow Outcome Scale – Extended (GOS-E), Numerical rating scale for pain, Return to work and work disability questions, Paediatric King’s Outcomes Scale for Closed Head Injury (KOSCHI), Pediatric Quality of Life Inventory (PedsQL), Linkage Coroner’s data, State deaths registry, TAC claims data, Department of Health data. The Department of Human Services (now Department of Health) commissioned the Victorian State Trauma Registry (VSTR) in 2001 in collaboration with the Transport Accident Commission Health Research. The registry provides a mechanism to monitor the system to inform service provision and development with an aim to reduce preventable deaths and permanent disability from major trauma. Changes to systems of care are monitored to ensure outcomes are improving including the reduction in deaths and disability over time. Monash University (Faculty of Medicine and Centre of Research Excellence in Patient Safety) Academic institution / research centre VIC NA NA The Centre of Research Excellence in Patient Safety (CRE-PS) was established in late 2005. Their research focuses on four main areas: the use of data to monitor quality of care, improving information transfer, reducing medication error and patient safety. CRE-PS is a part of the School of Public Health and Preventive Medicine. They have hosted a conference concerning PROMs: Patient-Reported Outcome Measures (PROMs): new horizons in health-related quality of life improvements (25-26 June 2015) and also have a project in MNHS Research Project database: Patient-reported outcome measures in multiple myeloma.
Monash University (Clinical Quality Registries) Academic institution / research centre VIC The primary purpose of a clinical registry is to monitor patient outcomes and report on the quality of the care for a medical disease or condition, or for an area or specialisation of health service provision. Registries currently collecting PROMs • VSTORM –trauma EQ5D measuring – usual activities – Mobility – pain/discomfort – personal care – anxiety/depression • Victorian Cardiac Outcomes Registry-EQ5D • Victorian Lung Cancer Registry-SF12 * no short form disease-specific tool • Prostate Cancer Outcome Registry-Australia and New Zealand Clinical registries are large databases that are managed and analysed to: – Identify variation in treatment and outcomes (including PROMs) – Monitor appropriateness of treatment – Identify deficiencies in access to treatment – Provide an early warning system if care deteriorates – Facilitate research to improve quality of care. The primary aim of the Prostate Cancer Outcomes Registry - Australia and New Zealand (PCOR-ANZ) is to improve the quality of care provided to men with prostate cancer. Information from the registry will be used to monitor diagnosis, treatment, complications, and long term quality of life outcomes. This information will be used to help identify trends and whether gaps exist in service provision. Appears to be under construction, will include some PROM data. Monash University (Victorian Orthopaedic Trauma Outcomes Registry) Academic institution / research centre VIC The registry collects information about orthopaedic injuries, treatment, complications and outcomes based on admissions to adult Major Trauma Service hospitals in Victoria. VOTOR includes measures of pain and HRQoL (uses The Injury Burden and Outcomes Program of VOTOR is to facilitate and conduct research focused on quantifying the burden of orthopaedic trauma, and validating and improving methods for measuring burden and outcomes (including quality of life).
International Society of Quality of Life Research (and Australian Special Interest Group) International NA ISOQOL recommends minimum standards for PROMs used in outcomes and comparative effectiveness research. ISOQOL is a non-profit society to advance the scientific study of health-related quality of life and other patient-centred outcomes to identify effective interventions, enhance the quality of health care and promote the health of populations. ISOQOL fosters the worldwide exchange of information through: scientific publications, international conferences, educational outreach, and support for health-related quality of life initiatives. ISOQOL is an international society with activities focused on promotion of high quality research in the science of health-related quality of life (HRQoL) measurement and outcomes. An Australian Special Interest Group (SIG) has been initiated. The Australia SIG brings together Australian-based researchers in the field of quality of life research. Given geographical remoteness of Australian quality of life researchers from colleagues in the northern hemisphere, the SIG aims to support local researchers by facilitating communication and opportunities for collaboration and exchange of ideas. The Cochlear™ Paediatric Implanted Recipient Observational Study (Cochlear International Prospective international registry for children who have implanted one or more hearing devices. Quality of life and utilities. A prospective international patient-outcomes registry for children. To date, the Cochlear P-IROS has recruited implant clinics across Australia, China, India, Indonesia, Turkey and Vietnam. Australian site: Hear and Say (Brisbane, Australia). * PROMs specific information includes instruments used, generic or condition-specific measures, frequency, sample, mode of administration, if information available ** Comments include current and / or planned future use, if information available