People with cancer face many emotional, psychological and practical day-to-day demands, in addition to the debilitating physical impacts of the disease and its treatment.1
Psychosocial care is an important aspect of cancer care in ensuring the psychological and emotional well-being of the cancer patient are recognised, addressed and managed during all phases of the cancer care continuum.2
Measurement of an individual’s experience of their cancer care can help improve services to better meet patient needs. A number of validated tools exist for measuring cancer patient experiences although there are currently no national data available for this indicator.
Data on cancer patient experiences are regularly collected across some jurisdictions in Australia. The Bureau of Health Information publishes independent reports and data about the performance of the public healthcare system in New South Wales.3 Cancer patient survey results are included in the Outpatient Cancer Clinics Survey reports and reflect the experiences of patients across 49 outpatient cancer clinics in New South Wales each year. These data are also available through the Bureau of Health Information Healthcare Observer from 2015 onwards.
In 2016, the Department of Health & Human Services in Victoria developed a Cancer Patient Experience Survey Toolkit to assist Victorian cancer services improve the quality of cancer care delivery and outcomes.4 The toolkit includes a survey and user manual for collecting information about and reporting on the adult cancer patient experience in Victorian health services. Survey results from the pilot program conducted between January 2016 to March 2018 are included in the Victorian cancer plan monitoring and evaluation framework: baseline report.5
Information about the measure(s):
The recommended measures for monitoring cancer patient experience at the national level are:
a. Patient information, communication, education (diagnosis):
(i) Proportion of patients reporting they understood their diagnosis.
(ii) Proportion of patients who were given written information about their diagnosis.
b. Patient information, communication, education (treatment):
(i) Proportion of patients who were offered a written assessment and care plan.
(ii) Proportion of patients who were given the name of a Clinical Nurse Specialist for treatment support.
c: Patient co-ordination and integration of care, continuity and transition:
(i) Proportion of patients reporting adequate involvement in decisions about care and treatment.
(ii) Proportion of patients reporting that their views were taken into account during treatment.
d: Respect for patient preference:
(i) Proportion of patients reporting that the possible side effects of treatments were explained in an understandable way.
(ii) Proportion of patients given written information about the side effects of treatments.
The above measures were derived from the National Health Service (NHS) England Cancer Patient Experience Survey (CPES). More information about the CPES can be found here.
Links to other content:
Bureau of Health Information – Healthcare Observer – An interactive data portal with detailed results about the performance of the NSW healthcare system.
Department of Health & Human Services - Victorian cancer plan monitoring and evaluation framework: baseline report – Survey results about adult cancer patient experiences from Victorian health services.
Australian Commission on Safety and Quality in Health Care (ACSQHC) - Australian Hospital Patient Experience Question Set - A survey used by hospitals and healthcare services to ask recent patients about their experiences of treatment and care.
NHS England – Cancer Patient Experience Survey 2019 and previous survey results
1. Cancer Australia. Psychosocial Care. Sydney: Cancer Australia. Available here
2. Cancer Australia 2014. Clinical guidance for responding to suffering in adults with cancer. Available here.
3. Bureau of Health Information. 2020. Outpatient cancer clinics: Results from the 2019 patient survey. [Accessed 21 December 2020]; Available here.
4. Department of Health and Human Services. Victorian cancer patient experience survey tool project. [Accessed 21 December 2020]. https://www2.health.vic.gov.au/about/health-strategies/cancer-care/cancer-projects/victorian-cancer-patient-experience-survey-tool-project
5. Department of Health and Human Services. 2020. Victorian cancer plan monitoring and evaluation framework: baseline report. [Accessed 21 December 2020]. Available here.