Person-Centred Research

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Person-Centred Research

Person-Centred Research

About us

Person-Centred Research is a newly established directorate within the Eastern Health Clinical School, launched in August 2024. Our team undertakes research on self-reported health, with a focus on the development, translation & cross-cultural adaptation, validation and implementation of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs).

We are also heavily involved in research on the interpretation of scores derived from PROMs, including score interpretation thresholds (commonly referred to as minimal important differences/MIDs) and bias in the measurement of change.

Our research

We give a voice to patients – and consumers more broadly – by promoting and advancing research methods around PROMs and PREMs for application in clinical practice and research. Our research methodology includes co-design, qualitative and quantitative/psychometric research methods.

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1. Self-reported side effect burden View

Evidence generation for side effect burden item Q168

Funding: European Organisation for Research and Treatment of Cancer (EORTC)

Lead CIs: Sandra Nolte, Claire Piccinin (Brussels, Belgium)

Other investigators from PCR: Tamara Jones

EORTC item Q168 and FACT-G item GP5 are recommended by the US Food and Drug Administration (FDA) as one example of assessing patient-reported side effect burden from cancer treatment. However, clear evidence of the use of singe items to assess patients’ side effect burden is still scarce. This project aims to fill this gap.

By applying qualitative and quantitative research methods, this project aims to generate evidence in support of (or potentially refute) the use of single items on side effect burden as part of clinical trials and research.

2. Reference values View

Update of the EORTC QLQ Reference Values Manual

Funding: European Organisation for Research and Treatment of Cancer (EORTC)

Lead CIs: Susanne Singer (Mainz, Germany), Monika Sztankay (Innsbruck, Austria)

Other investigators from PCR: Sandra Nolte

Reference data in form of reference values obtained from cancer patients and normative data from the general population of a specific region or country greatly enhance the interpretation of PRO data assessed from cancer patients.

To ensure that the reference values used continue to be a solid source for research and clinical practice, the current version of the EORTC QLQ Reference Manual published in 2008 needs to be updated and modernised. The EORTC-funded project "Update of the EORTC QLQ Reference Values Manual" addresses this task.

3. Children’s health-related quality of life View

Development and validation of EORTC quality of life measures for children, adolescents and young adults with cancer (AYA) as well as survivors of childhood cancer

Funding: European Organisation for Research and Treatment of Cancer (EORTC)

Lead CIs: Anne-Sophie Darlington (Southampton, UK), Samantha Sodergren (Southampton, UK), David Riedl (Innsbruck, Austria)

Other investigators from PCR: Sandra Nolte

Collaborators in Australia: Maria McCarthy, Cinzia De Luca, Kim Dalziel (University of Melbourne)

The EORTC is currently developing a range of health-related quality of life instruments for children and AYA. Part of the development process is the testing of the new instruments in various countries, including Australia. In collaboration with the Royal Children's Hospital, we are interviewing Australian children, AYA, childhood cancer survivors, parents and healthcare providers to generate evidence in support of the use of these new developed EORTC measures.

4. Questionnaire equivalency View

The EORTC QLQ-F17 as a shortened version of the EORTC QLQ-C30 to assess self-reported functioning in cancer patients: Investigating equivalence and psychometric properties in a randomized cross-over trial

Funding: European Organisation for Research and Treatment of Cancer (EORTC)

Lead CI: Michael Koller (Regensburg, Germany)

Other investigators from PCR: Sandra Nolte

The EORTC QLQ-F17, a shortened version of the EORTC QLQ-C30, solely contains items related to functioning and omits symptom scales. The QLQ-F17 is conceived as an equivalent to the functional part QLQ-C30, but to date there is no empirical evidence to support this rationale. This randomized, cross-over, multi-national, questionnaire-based study investigates the equivalence and psychometric properties of the QLQ-F17 compared to the functional scales of the QLQ-C30.

5. Clinical Outcome Assessment (COA) score interpretation View

Defining Score Interpretation Thresholds for Clinical Outcome Assessment Measures: A Review of Terminology and Reporting Recommendations

Funding: no external funding

Lead CIs: Emuella Flood (AstraZeneca, USA), Sandra Nolte

The concept of ‘score interpretation threshold’ for understanding score differences of clinical outcome assessments (COAs) and terminology around this topic have evolved over several decades. Yet, considerable confusion regarding terminology remains, leading to potentially erroneous interpretation of COA results. This project, instigated as part of a larger initiative through the Drug Information Association (DIA), seeks to provide an updated overview of terminology and an assessment of trends to explore opportunities for harmonising the field.

6. The Validity Framework in PRO research View

Validity arguments for patient-reported outcomes (PROs): Validation planning and consideration of consequences of intended interpretation and use of PROdata

Funding: no external funding

Lead CIs: Melanie Hawkins (Swinburne University)

Other investigators from PCR: Sandra Nolte

Contrary to common usage in the health sciences, the term “valid” does not refer to the properties of a measurement instrument but to the extent to which data-derived inferences are appropriate, meaningful, and useful for intended decision making. The aim of this project is to determine how validity testing theory (the Standards for Educational and Psychological Testing) and methodology (Kane’s argument-based approach to validation) from education and psychology can be applied to validation practices for patient-reported outcomes that are measured by instruments that assess theoretical constructs in health.

Our team

Partnerships and networks

Over the last 20 years, we have built an extensive global network in patient-reported outcomes (PRO) research across academic, not-for-profit and industry sectors. These range from close collaborations and partnerships to consulting to active engagement in various initiatives and learned societies in the PRO field.

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