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Sydney Quality of Life Office
Optimising the use of patient-reported outcomes (PROs) to improve patient quality of life
As one of few specialised Quality Of Life (QOL) research units internationally, the QOL Office represents a unique research strength at the University of Sydney.
Our mission
The mission of the Sydney Quality of Life Office is to optimise the use of patient-reported outcomes (PROs) in clinical trials and routine care, to achieve the best possible evidence to inform patient care, to improve patient quality of life, and to ensure that the patient perspective is part of health care, research, and decision-making.
Why quality of life?
A good quality of life is a universal aspiration. Health is a key aspect of quality of life, and when health is threatened, patients, family members and health care providers are united in wanting to maintain their quality of life, despite disease and treatment.
Patient-reported outcomes (PROs), including health-related quality of life (HRQoL), functioning, symptoms, patient preference and utility, provide the patient’s perspective on the impact of disease and treatment.
The patient’s perspective is widely recognised as a key consideration in evaluating the effectiveness of health-related interventions, complementing objectively assessed outcomes. PROs are now recognised by many major health regulatory bodies and health care systems; contributing to the evidence-base for clinical care, practice guidelines, and product labelling claims internationally. QOL/PRO data are also integral to government decisions about health spending in Australia, and overseas.
Can you measure quality of life?
HRQOL is typically assessed with validated questionnaires, and is relevant in many health conditions, including cancer, diabetes, obesity, renal disease, musculoskeletal disorders, asthma, and mental health. As a very abstract and dynamic concept, QOL presents a range of challenges that need to be understood and addressed if we are to assess it in a scientifically robust manner. Fortunately, QOL Research is a field in its own right, with an international community of researchers dedicated to innovating and improving methodology. QOL Office staff are internationally recognised forerunners in the field.
What we do
We contribute to the improvement of the quality of life of patients, their families, and carers through clinical and implementation research, education and collaboration with health professionals, patients, and carers:
- We provide an advisory service to develop outstanding PRO researchers with world-class skills in HRQOL methods and research to inform patient-centred health care.
- We provide the Cancer Australia QOL Technical Service to members and staff of the Co-operative Clinical Trials Groups across Australia and New Zealand.
- We provide educational training workshops the University of Sydney and the Australian health reserch community, and we develop resources to assist researchers with the HRQOL aspects of their studies.
- We conduct PRO research to address clinical and methodological issues to international standards of excellence.
- We maintain and regularly update PoCoG’s Psycho-oncology Outcomes Database (PoD), an online accessible database that contains information about more than 400 validated patient reported outcome measures of health-related quality of life, psychological morbidity, psychological constructs and styles, unmet needs, satisfaction with services and social support and functioning in people with cancer and their families.
Current research
The QOL Office is currently facilitating and collaborating on PRO research projects in:
- ovarian cancer
- early bladder cancer
- early breast cancer
- survivorship in colorectal cancer
- country-specific utility weights for the FACT-U-8D and EORTC QLU-C10D measures
- implementing patient-reported measures to improve patient self-management and behaviour change, clinical care and health services
Previous research
Staff at the QOL Office led an international initiative to develop an evidence-based checklist for the inclusion of QOL components in clinical trial protocols, called SPIRIT-PRO, published in Journal of the American Medical Association, 2018. This is an extension of the SPIRIT statement (Standard Protocol Items: Recommendations for Interventional Trials).
The QOL Office was part of the collaboration to develop the CONSORT-PRO extension of the CONSORT statement (CONsolidated Standards Of Reporting Trials) published in Journal of the American Medical Association, 2013.
These are just two examples of the QOL Office’s numerous internationally significant research outputs. Contact the QOL Office to access our research outputs, or browse our online resources.
Who we are
The QOL Office is located within the School of Psychology at the University of Sydney. Originally created by the Psycho-Oncology Co-operative Research Group (PoCoG), the office is now under the direction of the Cancer Australia Chair in Cancer Quality of Life, Prof Madeleine King.
The QOL Office receives core infrastructure funding from the Australian federal government through Cancer Australia, to provide the QOL Technical Service to the Co-operative Clinical Trials Groups across Australia and New Zealand.
Academic staff at the QOL Office are also educators and PRO researchers facilitating, collaborating on, and supporting PRO research across multiple health and medical disciplines, addressing clinical and methodological issues to international standards of excellence.
Our people
- Professor Madeleine King, QOL Office Director, Cancer Australia Chair in Cancer Quality of Life
- Dr Claudia Rutherford, QOL Office Deputy Director, Senior Research Fellow
- Dr Rachel Campbell, QOL Office Postdoctoral Research Associate
- Dr Angela Ju, QOL Office Postdoctoral Research Associate
- Ms Margaret-Ann Tait, QOL Office Senior Research and Administration Officer
