Importance of patient voices in cancer treatment

A breast cancer patient’s perspective on their physical well-being can provide a better indication of their response to cancer treatment than clinician-based tools, a new study has found, highlighting the importance of shared decision-making in the treatment process.

The research also identified differences between clinician-based data and the patient-reported data, with some clinicians overestimating their patient’s physical wellbeing.

“An essential component of patient-centred care, shared decision making is a process in which the clinician and patient collate and discuss the available evidence on the benefits and harms of treatments, ensuring the most appropriate and informed decision is made for the patient,” says study lead author Natansh Modi, an NHMRC PhD candidate in the Clinical Cancer Epidemiology Lab at Flinders University.

NHMRC PhD Candidate, Natansh Modi

Two tools can be used during shared-decision making: the Eastern Cooperative Oncology Group performance status (ECOG PS), a tool interpreted by the doctor, and patient-reported outcomes (PROs), structured tools whereby a patient self-reports their perspective on their physical, social, emotional, and functional abilities.

“PROs are generally used as secondary data in clinical trials to help with interpreting results; however, they have recently shown to be important in providing a prognosis to the patient for cancer types including bladder, lung and skin cancers, but their value to HER2-positive advanced breast cancer had yet to be fully explored,” says Mr Modi.

Published in the journal ESMO Open, the study pooled data from several trials to look at almost 3000 patients who underwent drug treatments for human epidermal growth factor receptor 2 (HER2)-positive breast cancer.

“We found that a number of patient-reported outcomes, including those on physical well-being and mental health, were identified as significant factors associated with either the patient’s overall survival of cancer, with cancer not progressing or severe adverse events during treatment,” says Mr Modi.

“The results indicate that information provided by the patients themselves was better able to predict their reaction to the treatment and their overall prognosis than the clinician-interpreted scores.

“Significantly, patient-reported physical well-being was found to be the most useful patient-reported outcome in determining a diagnosis for all available treatment outcomes.”

In some cases, the study found very different results between the clinician-based data and the patient-reported data.

“We determined that around 70% of the patients who their clinicians defined as ‘fully active, and able to carry on all pre-disease performance without restrictions’ went on to report limitations in their physical well-being status when asked to self-report,” says Mr Modi.

The authors say the research highlights the importance of listening to patients, with both types of tools providing helpful independent prognosis information.

“This study demonstrates that patient-reported physical well-being can predict prognosis better than clinician-interpreted ECOG PS. It is, therefore, essential that clinical practice transforms to place a greater emphasis on the patient’s perspective and voice,” says Mr Modi.

“By combining patient-reported questionnaires and clinically interpreted measures, we can provide the best clinical insights that allow for shared decision-making in cancer treatment, while also enhancing the design of future clinical trials.”

‘Patient-reported outcomes predict survival and adverse events following anticancer treatment initiation in advanced HER2-positive breast cancer’ by N.D. Modi, N.O. Danell, R.N.A. Perry, A.Y. Abuhelwa, A. Rathod, S. Badaoui, R.A. McKinnon, M. Haseloff, A. Shahnam, S.M. Swain, M. Welslau, M.J. Sorich and A.M. Hopkins is published in the journal ESMO Open.

This work was supported by an Emerging Leader Investigator Grant from the National Health and Medical Research Council, Australia (APP2008119) to AMH; Beat Cancer Research Fellowships from Cancer Council South Australia to RAM and MJS; and a Postgraduate Scholarship from the National Health and Medical Research Council, Australia (APP2005294) to NDM.

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College of Medicine and Public Health Flinders Health and Medical Research Institute

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