Patient-reported outcomes (PROs) may be the key to finally putting patients at the core of personalised cancer care delivery, say the authors of a Perspective in the Medical Journal of Australia.
Twenty years after an Australian House of Representatives Inquiry into the management of breast cancer recommended that cancer care should be delivered using a multidisciplinary approach, integrating patients’ perspectives into assessment, treatment planning, and ongoing monitoring remains “the elusive final frontier”.
Professor Bogda Koczwara, Senior Staff Specialist at Flinders Medical Centre and Flinders University, and colleagues wrote that patient-reported outcomes (PROs) report on “patients’ subjective perception of health, functional status, unmet needs, and quality of life and are collected directly from patients either online, via a smartphone, or through paper-based means”.
“Specific questions can be tailored to particular cancer types, populations, or different phases of cancer trajectory,” the authors say.
“The evidence for the utility of PROs in cancer care is compelling,” Professor Koczwara says.
“Two systematic reviews concluded there was strong evidence that implementation of PROs improves patient-provider communication and patient satisfaction.
“PROs are recommended by the Australian Commission on Safety and Quality in Health Care, have been advocated for by the Clinical Oncology Society of Australia, and have been included as a critical element of care in the Australian Digital Health in Cancer Care Roadmap.
“But to date, their adoption into routine clinical practice has been limited.”
A barrier to PRO integration has been the ability of the health system to operationalise routine collection and response to PROs data, the authors wrote.
“In 2020, we finally have technology for efficient, real-time collection, reporting of, and response to PROs through customisable portals and dashboards and integration with the electronic medical records.”
Barriers remain, however, including the slow and fragmented rollout of e-records technology.
“It is time to articulate the principles and outcomes necessary to integrate PROs into the routine clinical workflow,” the authors say.
“Where multidisciplinary care called for a core team of experts, the PROs collection requires a core dataset.
“There is a need for a clear communication framework involving relevant heath care providers in a timely fashion, with feedback communicated to the patient.
“The process must be accessible to patients irrespective of technology, rurality, remoteness or language barriers.
“Lastly, the collection of PROs needs to be underpinned by agreed standards that clearly articulate and support the role of the patient in this process.”
The authors maintained that the barriers were not insurmountable, however.
“PROs can become an important part of value-based care delivery with support through relevant drivers, such as reimbursement and accreditation.
“But we need to build capacity through training and a community of practice to share learnings, resources and tools.
“Many tools already exist, with technology fully capable to support rapid processing of data and linkage to electronic health records; although it is important to note that PROs collection can be achieved using paper-based surveys or simple reporting such as text messaging.”
PROs collection, the authors concluded, was key to finally realising the full potential of multidisciplinary cancer care delivery.
“It is time to reach this final frontier and make personalisation of cancer care through PROs an achievable standard in Australia.”