Patient reported measures

Why this indicator is important

Patient reported measures (PRMs) support person-centred care by helping clinicians to focus on and action what matters most to people with cancer during consultations.[1] Local and international research shows that regularly collecting PRMs (such as the Distress Thermometer and Problem List (DT+PL) and Edmonton Symptom Assessment Scale (ESAS)) can improve outcomes including survival, less hospital visits, lower symptom burden, better quality of life and higher rates of treatment completion.[2-9] PRMs can also support improvements in services and the health care system.

The Cancer Institute NSW Patient Reported Measures Program provides further information on what PRMs are, why they are used, and how patient reported experiences and outcomes are collected, analysed and used to support more patient‑centred cancer care and quality improvement across NSW cancer services.

Since 2017, the Institute has developed and rolled out an integrated electronic PRMs system that is available to NSW public cancer services. 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 April 2026:  

  • Technical implementation of the cancer PRMs system has been completed in 13 local health districts. 40, 492 surveys have been completed in total, since the program began. This includes 14, 425 surveys completed from January 2025 to April 2026.
  • 20, 423 patients have completed a survey, since the program began.

NSW Cancer Plan activities 

The Institute 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 focus populations. Patient-Reported Outcome Measures (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) 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.

During 2025, a research team at Sydney Childrens Hospital Network Kids Cancer Centre implemented several age-appropriate PRMs measures to assess children and adolescents with cancer. We are now partnering with Sydney Childrens Hospital to deliver a specialised paediatric project.

Notes 

Data reported is most up to date available at the end of April 2026. 

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 
  2. 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
  3. 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, 34:557-565
  4. 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: 324-332
  5. 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) 24:2217–2224
  6. 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.
  7. 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): 7107-7115, Barbera L, Sutradhar R, Seow H et al. 
  8. Two-Year Survival Comparing Web-Based Symptom Monitoring vs Routine Surveillance Following Treatment for Lung Cancer, Denis F, Basch E, Septans A-L et al JAMA 2019; 321 (3): 306-307.
  9. The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO Clinical Practice Guideline, Di Maio M.[4], Basch E.[10], Denis F.[7], et al Annals of oncology : official journal of the European Society for Medical Oncology volume 33 issue 9 pages 878-892 September 2022.


Enrolments in cancer clinical trials as a proportion of cancer incidence