Challenge
Current treatment decision-making for lymphoma patients relies on trial outcomes and clinician-reported toxicity rates rather than patient-reported outcome (PRO) data. While therapeutic advances are translating to better disease control and survival for many people living with lymphoma, methods to assess the impact of modern treatments on quality of life are currently non-existent. Lymphoma patients prioritise quality of life second only to cure, yet PRO data are not routinely informing lymphoma patient care.
Focus
This consumer-driven research will implement new electronic patient-reported outcome (ePRO) collection relevant to modern blood cancer care to improve health outcomes for people living with lymphoma. A multidisciplinary implementation science team, including lymphoma survivors, healthcare professionals, registry experts, ePRO digital technology specialists and health services researchers, will employ implementation science approaches to co-develop and pilot test ePRO collection in routine lymphoma care. ePRO data will be integrated into the existing national lymphoma registry of more than 10,000 lymphoma patients. Once designed and integrated, a pilot study across four sites will test the acceptability and feasibility of ePRO collection from the perspective of key stakeholders.
Impact
This project will generate co-created knowledge about the impact of lymphoma in Australia during treatment and follow-up survivorship. The findings can be used by clinicians to improve patient care and inform tailored patient education and supportive care decisions, while increasing patients’ understanding of likely treatment effects and preventing the occurrence of unmet needs, ultimately leading to improved patient outcomes. The project will also provide an ePRO model that can be extended to other blood cancers.
Researcher
Professor Claudia Rutherford is a clinical research methodologist with experience in health outcomes measurement, psychometrics, and clinical study design. For over 20 years, Claudia has specialised in patient-reported outcomes (PROs), including health-related quality of life (HRQL) and symptom burden in research and clinical practice. Her expertise in PRO science spans the research process, covering study design, measurement, analysis, interpretation and reporting of PROs. Claudia also has experience in conducting systematic reviews, multi-centre qualitative and quantitative research, developing and evaluating PRO measures, and cross-cultural and linguistic translation of PRO measures across multiple health conditions.
During 2013-2021, Claudia worked at the Sydney Quality of Life Office (SQOLO). In her role as Deputy Director, she provided specialist advice, education and developed resources to optimise the design, conduct, analysis, interpretation and reporting of PRO endpoints in clinical trials developed by the 14 Australian and New Zealand Cancer Clinical Trials Groups. In 2023, the SQOLO was re-established under Claudia’s direction, with a goal to optimise the use of PROs in health research and routine health care, to achieve quality evidence to inform patient care, improve patient HRQL, and ensure that the patient perspective is part of health care, research, and decision-making.
Claudia’s early career focused on developing specialist knowledge in PRO methodology. In recent years, she has focused her research on improving the standards of PRO/HRQL research with a goal of reducing PRO/HRQL-related research waste.
