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  • Integrating a patient's perspective into their cancer care: the final frontier

    Author: Charlotte Mitchell

Patient-reported outcomes (PROs) may be the key to finally putting patients at the core of personalised cancer care delivery, say Australian experts.

Published in an MJA article, the authors wrote that patient-reported outcomes, which include patients’ perceptions of health, unmet needs, and quality of life, can be collected directly from patients either online or through paper-based means.

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Today, multidisciplinary care does not routinely include input from patients themselves - rather, their circumstances are discussed and treatment recommendations are made.

Speaking to HealthTimes, lead author Professor Bogda Koczwara, Senior Staff Specialist at Flinders Medical Centre and Flinders University, described PROs as the final frontier.

“To me, the final frontier is putting subjective patient's perspective into the decision-making process in healthcare. And PRO, a patient-reported outcome, is really a tool to do that.”

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“Because we know that we are actually not very good at making guesses about this. There is good evidence that doctors tend to underestimate patients’ symptoms, and incorrectly attribute patients’ unmet needs. And so, we have to find a way of asking patients about what is important to them, and that's what PROs do.”

Professor Koczwara explained that PROs offer a standardized objective, way of assessing what the patient symptoms and needs are “as  opposed to what we think the patient symptoms are ”.
“in us trying to explain this concept, we reflected on  how much cancer care changed when we introduced multi-disciplinary management over 20 years ago.”

“[This is] where we said look, in order to provide best advice for patients, we need to bring all the different disciplines to the table. And when I actually started looking into this, I discovered that back then, 20 years ago, the vision was that all those different perspectives would include the patient.”

“Except that logistically, we never figured out how to do that. And what we're trying to argue now is that PROs are a way of putting the patient at the core of the multidisciplinary discussion because PROs allow us to ask the patient about their needs. What are their priorities? What are the symptoms they're experiencing from their perspective? As opposed to us just guessing that.”

Professor Koczwara said that the evidence for benefits of using PROs in cancer care clinical practice.

“They require less emergency support from hospitals. So, for example, there is evidence that the use of PROs reduces admissions to emergency departments. Patients are more satisfied with the health care they receive.”

“And there is one study that showed that patients who were evaluated using PROs actually lived longer than those who did not receive that sort of evaluation.”

“That's only a single study, but it's a very important study because if this was a drug, we would all be using it.

Professor Koczwara said that the issue was that despite all the evidence, PROs are still not being used in routine clinical practice.

“And until recently, the big barrier to it was lack of sufficient technology to really incorporate it into the clinical workflow. But that's no longer the case.”

“And I think that, even in the systems where technology is not available, there are paper-based formats available as an alternative.”

“So I think that we have enough evidence, we have enough health system facility to bring the PROs into clinical practice. What we need to do now is make that leap.

She said that that the publishing of this paper in the MJA   as an important first step towards more widely integrating PROs into clinical care.

“We really wanted to articulate a compelling vision of why adoption of PROs is  important, and not just because they are  a tool, but because it aligns with the principles of how best cancer care is delivered. So that was our first step.”

“we're currently working on developing some very practical recommendations on how to adopt PROs into clinical cancer care. If you’re a health service that wants to use them, how do you start? And we should have those recommendations probably in May or June of this year.”

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Charlotte Mitchell

Charlotte is a published journalist and editor, with 10 years of experience in developing high-quality content for national and international publications.

With an academic background in both science and communications, she specialises in medical and science writing. Charlotte is passionate about creating engaging, evidence-based content that equips the community with important information on issues around healthcare, medicine and research.

Over the years, she has partnered with organisations including the Medical Journal of Australia, Cancer Council NSW, Bupa, the Australasian Medical Publishing Company, Dementia Australia, MDA National, pharmaceutical companies, and state and federal government agencies, to produce high-impact news and clinical content  for different audiences.