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.
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.
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.
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:
The QOL Office is currently facilitating and collaborating on PRO research projects in:
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.
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.