Our mission is to optimise the use of patient-reported outcomes (PROs) in health research and routine health care, to achieve the best possible evidence to inform patient care, improve patient quality of life (QOL), and ensure that the patient perspective is part of health care, research, and decision-making.
A good QOL is a universal aspiration. Health is a key aspect of QOL, and when health is threatened, patients, family members, and health care providers are united in wanting to maintain their QOL, despite disease and treatment.
PROs, such as health-related quality of life (HRQL), functioning, symptoms, and treatment side-effects provide the patient’s perspective on the impact of disease and health care.
The patient’s perspective is widely recognised as a key consideration in evaluating the effectiveness of health-related interventions, complementing objectively assessed outcomes.
Health regulatory bodies and health care systems consider PROs in the evidence-base for clinical care, practice guidelines, and product labelling claims internationally.
PRO/HRQL data are also integral to government decisions about health spending in Australia, and overseas.
QOL is typically assessed with validated questionnaires or measures, and is relevant in most health conditions, including cancer, diabetes, obesity, renal disease, musculoskeletal disorders, asthma, and mental health.
As an 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, the field of QOL research has an international community of researchers dedicated to innovating and improving methodology. Our QOL researchers are internationally recognised in the field.
We contribute to the improvement of the quality of life of patients, their families, and carers through clinical, methodological, and implementation research, education, access to resources and collaboration with health professionals, patients, and carers:
- we provide an advisory service to develop outstanding PRO researchers with world-class skills in HRQL methods and research to inform patient-centred health care,
- we provide educational training and workshops to develop researchers at all stages of their career,
- we develop resources on the University of Sydney Knowledge Hub to assist researchers with the PRO/QOL aspects of their studies, and
- we conduct PRO research to address clinical and methodological issues to international standards of excellence.
Our researchers are currently facilitating and collaborating on clinical and methodological PRO research projects in:
- early bladder cancer
- colorectal cancer
- multiple myeloma
- cancer supportive care
- immunotherapy symptom monitoring
- medicinal cannabis
- kidney disease
- chronic wounds
- PRO measure development/ psychometric testing/ cross cultural and linguistic translation
- implementing patient-reported measures to improve patient self-management and behaviour change, clinical care, and NSW health services
- Setting International Standards of Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials (the SISOQOL-IMI consortium)
The Sydney QOL Office is located within the University of Sydney Susan Wakil School of Nursing and Midwifery, part of the Faculty of Medicine and Health, under the direction of Associate Professor Claudia Rutherford.
Academic staff at the Sydney QOL Office are 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.
The QOL Office was originally created by the School of Psychology’s Psycho-Oncology Co-operative Research Group (PoCoG) in 2008 to support the founding Cancer Australia Chair in Cancer Quality of Life, Professor Madeleine King.
In 2010, Professor King received core infrastructure funding from the Australian federal government to provide the Cancer Australia QOL Technical Service to Co-operative Clinical Trials Groups across Australia and New Zealand.
Professor King and the QOL Office team continued to provide this service and conduct PRO research until her retirement in 2021.
In 2023, the Sydney QOL Office was re-established within the Faculty of Medicine and Health to conduct PRO-related research and to provide PRO education and support to researchers and students across the University of Sydney.