Cancer

Patient perspective integral to new colorectal cancer standards


A new standardised set of patient centered outcome measures will help inform future value-based care for patients with colorectal cancer.

The Colorectal Cancer Standard Set was an initiative of the International Consortium for Health Outcomes Measurement (ICHOM) and funded in part by Bowel Cancer Australia.

ICHOM working group member Professor John Zalcberg said there were few surprises in the final list of 31 outcomes across categories of survival and disease control, disutility of care, degree of health and quality of death.

However the process, which including a patient focus group and patient validation survey, ensured some softer measures such as social functioning made the final cut along with traditional clinical measures such as margin status.

“Everyone in research and clinical medicine is acutely aware that consumer engagement is critical,” he said.

“For patients who have had surgery, then outcomes like faecal leakage, stool frequency and diarrhoea are very important. Similarly bowel functioning and sexual functioning are important for all patients.”

Professor Zalcberg, from Monash University, told the limbic the Colorectal Cancer Standard Set provided consensus on the best indicators for benchmarking quality of care nationally and internationally.

CEO of Bowel Cancer Australia Mr Julien Wiggins said health professionals were gathering more data than ever before, but measures often had little relationship to what mattered most to patients.

“Our many patient supporters have told us long-term care and quality of life are among the most important, yet unacknowledged, aspects of patient care. Issues like dietary restrictions impact a patient’s life forever.”

“Almost 300 patients believe this list now captures the most important outcomes for them including long-term outcomes,” he told the limbic.

Mr Wiggins said a recent Canadian study had shown patient reported outcomes could be incorporated into standard clinical care for early stage colorectal cancer and promote more informed discussions between patients and doctors.

“Clinicians only see patients at one point in time. Patient reported outcomes provide an opportunity to see beyond the immediate service provision,” he said.

Professor Zalcberg and Mr Wiggins agreed that measuring, reporting and comparing against a standard set of health outcomes would improve patient care and reduce inefficiencies.

Mr Wiggins told ICHOM’s inaugural Australasian forum in Sydney last week that Bowel Cancer Australia would soon be launching an online platform to start collecting and sharing data on patient reported outcomes.

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