Patient reported measures

Why this indicator is important

Patient-reported measures (PRMs) are defined as ‘any report of the status of a patient’s health condition that comes directly from the patient without interpretation of the patient’s response by a clinician or anyone’.[1] They can include tools, such as surveys, questionnaires or scales, used to collect information directly from a patient.  

There are two types of patient-reported measures: 

  1. Patient-reported outcome measures (PROMs): which assess a patients’ perspectives on how illness and/or care impacts their well-being (e.g., level of pain, ability to return to work); and  

  1. Patient-reported experience measures (PREMs): a patients’ perception of their experience of the healthcare system (e.g., availability of parking, ease of access, cost of services). 

Gathering PRMs involves asking people with cancer about their experiences and outcomes, providing the responses to clinicians in real time, helping them to identify urgent clinical and supportive care needs.  

PRMs are considered a critical enabler of person-centred care, enhancing patient/clinician communication. Local and international research demonstrates that consistent collection of PROMs such as the Distress Thermometer and Problem List (DT+PL) and Edmonton Symptom Assessment Scale (ESAS) drives improved patient outcomes in terms of survival, reduced emergency department (ED) visits and hospitalisations, reduced symptom burden, increased quality of life and increased rates of treatment completion.[1-7] PRMs can also be used to drive immediate and long-term local and system improvements. 

Since 2017, the Institute has developed and rolled out an integrated electronic PRMs system that is available to NSW public cancer services. The electronic Cancer PRMs System provides cancer services with the capability to collect PROMs. It also makes the information available to the relevant healthcare teams through the cancer service’s Oncology Information Systems (MOSAIQ and/or ARIA). PRMs is a key program of the NSW Cancer Plan 2022-2027.   

 

About this indicator

This indicator shows the technical implementation of the electronic PRMs solution across NSW and the collection of PRMs across NSW public cancer services. As of the end of December 2024:

  • Technical implementation of the Cancer PRMs System has been completed in 14 local health districts

  • 26,564 surveys have been completed in total

  • 13,585 patients have completed a survey. 

NSW Cancer Plan activities 

The Cancer Institute NSW is committed to providing ongoing leadership and support for the systematic collection and use of PRMs at the point of care for people affected by cancer across NSW, including in target populations.  PROMs surveys are now available in 11 languages (English, Arabic, Simplified Chinese, Traditional Chinese, Greek, Korean, Italian, Spanish, Vietnamese, Maltese and Macedonian). Additionally, an Aboriginal and Torres Strait Islander specific survey What Matters 2 Adults (WM2A) is available through the Cancer PRMs System. This measure was developed by University of Sydney and University of Queensland in partnership with and is underpinned by the values and preferences of Aboriginal and Torres Strait Islander people.   

Notes
Data reported is most up to date available at the end of 2024. Graphs and tables reflect the last reporting period (to end of December 2024).

References 

  1. U.S. Department of Health and Human Services Food and Drug Administration. Guidance for Industry Patient-Reported Outcome Measures: Use in medical product development to support labelling claims. December 2009. Accessed 24/02/2025 https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-reported-outcome-measures-use-medical-product-development-support-labeling-claims  

  1. Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial, Eysenbach G., Foster C.i., Fincham C., Chu Y., Girgis A., Durcinoska I., Arnold A., Descallar J., Kaadan N., Koh E., Miller A., Ng W., Carolan M., Della-Fiorentina S.A., Avery S. and Delaney G.P., Journal of medical Internet research volume 22 issue 10 e19685 29/10/2020 

  1. Symptom Monitoring With Patient-Reported Outcomes During Routine Cancer Treatment: A Randomized Controlled Trial, Basch, E, Deal, A, Kris, M, et. Al., 2016, Journal of Clinical Oncology, 34:557–to565 

  1. The effect of real-time electronic monitoring of patient-reported symptoms and clinical syndromes in outpatient workflow of medical oncologists: E-MOSAIC, a multicenter cluster-randomized phase III study (SAKK 95/06), Strasser, F, Blum, D, von Moos, R et. Al., 2016, Annals of Oncology, 27: 324–to332 

  1. Longitudinal patterns of cancer patient reported outcomes in end of life care predict survival George J. Stukenborg & Leslie J. Blackhall & James H. Harrison & Patrick M. Dillon2& Paul W. Read, Support Care Cancer (2016) 24:2217–to2224 

  1. Impact of Standardized Edmonton Symptom Assessment System Use on Emergency Department Visits and Hospitalization: Results of a Population-Based Retrospective Matched Cohort Analysis. Barbera L, Sutradhar R, Seow H et al. ,JCO Oncology Practice 2020; 16 (9): e958-e965. 

  1. The impact of routine Edmonton Symptom Assessment System (ESAS) use on overall survival in cancer patients: Results of a population-based retrospective matched cohort analysis. Cancer Med 2020; 9 (19): 7107–to7115, Barbera L, Sutradhar R, Seow H et al.  

Enrolments in cancer clinical trials as a proportion of cancer incidence