Patient-Reported Outcome Measures (PROM) are used to measure patients’ perceptions of both the impact of a condition and related treatment on their health[1], whilst Patient-Reported Experience Measures (PREM) broadly refer to a patient’s experience with their care, including expectations, satisfaction, preferences, and values[2].
PROM/PREM feedback relates to: patient-clinician communication; patient challenges; and supporting clinical decisions by empowering patients’ involvement in care. Such feedback is unavoidably heterogeneous. Variation principally relates to: PROM/PREM used and for what purpose; the healthcare setting; format and timing; and the population of patients. In this last respect, as yet, no PREM has been developed for or validated with Aboriginal people with experience of cancer.
Furthermore, there are challenges, understood by Community, to collation, interpretation and utilisation within the Aboriginal population, including: selection bias; recruitment across contexts; timing of data collection; and summarising information. Such context dependent feedback requires bespoke mechanisms for implementation.
To fill this gap in PREM provision, the Cancer Data and Aboriginal Disparities (CanDAD) Project has developed ACME – Aboriginal Cancer Measure of Experience. 64 semi-structured interviews with Aboriginal people with experience of cancer, carers/family members and service providers were analysed using patient pathway mapping and inductive thematic analysis. This included concerns and priorities of participants as they interact with the health system, located in the context of health system priorities as defined by South Australian optimal cancer care policies. Underlying themes, including barriers and enablers to care, were used to generate item-level statements within distinct phases of the cancer pathway, enabling ACME to focus on detection; treatment; and survivorship. Face and content validity were assessed with a group of stakeholders including the CanDAD Aboriginal Community Reference Group.
This presentation will demonstrate the construction and validation of ACME and identify its potential in reducing disparities in cancer through linkage with clinical data.
[1] Greenhalgh J. The application of PROs in clinical practice: what they are, do they work, and why? Qual.Life Res. 2009; 18(1): 115-23 doi: 10.1007/s11136-008-9430-6
[2]Chen J. Integrated care: Patient reported outcome measures and patient reported experience measures – a rapid scoping review. NSW Agency for Clinical Innovation. https://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0009/281979/ACI_Proms_Prems_Report.pdf Accessed 3rd October 2016.