Patient-oriented Advancements

There is a growing toolbox of resources for facilitating better communication of patient values and goals to cancer care providers, and thereby reduce patients’ uncertainty about treatment choices (called “decisional conflict”), Dr Nielsen noted. “Many are free online, to help patients and providers have better information at their fingertips to make better decisions.”

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He and colleagues recently studied a fee-based tool: an interactive web-based decision aid called WiserCare, which combines patient education with preference measurements, ahead of clinic appointments for patients with newly-diagnosed prostate cancer.2 WiserCare informs patients about trade-offs and treatment considerations that they will be discussing at clinic visits, Dr Nielsen said.

Among 109 men who used WiserCare prior to consultation, overall decisional conflict declined by 37% (P < 0.0001), reflecting improvements in all 5 subscales of decisional conflict, the researchers reported. Using the site was associated with a greater sense of joint responsibility for treatment decisions among patients, as well.

“It provides some relative-ranking information about what’s important to the patient,” Dr Nielsen explained. “We evaluated a number of measures, such as how patients articulated their goals and preferences. Overall, our assessment suggested that tools like this provide measurable improvements, and can help patients and providers walk through what’s involved in different treatment options.”

Discrepancies Among Patient-oriented Variables

As new PRO endpoints become more widely employed in research, even in the measurement of quality of care in clinical settings, it is important to clearly distinguish PROs from patient preferences and quality of life, emphasized Richard Schilsky, MD, FASCO, FACP, chief medical officer of the American Society of Clinical Oncology (ASCO) in Alexandria, Virginia.

“They’re not all the same thing,” Dr Schilsky cautioned. “Patient preferences are typically just that: I prefer to receive this treatment every week than that 1 every 3 weeks. That’s a patient preference. Treatments may produce similar outcomes except that 1 is associated with neuropathy—nerve damage—and another is associated more commonly with diarrhea. If I’m a professional violinist, my preference is to avoid nerve damage at all costs, because that will affect my career.”

PROs, in contrast, are measurements of a patient’s own experience, usually regarding adverse events associated with treatment, such as pain, nausea, or fatigue, Dr Schilsky said. “Quality of life is typically a more global assessment of how a patient is going through her life experiences. It has many domains, many scales—such as social support, physical functioning, psychological—and they all roll up into an overall ‘Quality of Life’ assessment.”

Patients may experience a number of PRO symptoms but have “a great social support network,” or very effective treatment, and enjoy a good quality of life despite the side effects, he noted.

Quality of life measurements have been incorporated into cancer clinical trials for decades, Dr Schilsky said. “Specific objectives have not always been clearly articulated in those studies,” he cautioned. “They are often underpowered to address specific quality of life outcomes, because they’re almost always secondary analyses.” A high proportion of patients drop away from studies as they become sicker, as well, so that quality of life questionnaires are not always completed, leading to missing data and potential bias, he added.

Including PROs is a more recent development in cancer trials, Dr Schilsky said. “Generally speaking, clinicians underrate what patients report,” he noted. “There is a discrepancy.”

Although inclusion of PROs in clinical trials is still new and “relatively uncommon,” Dr Schilsky noted that there are examples of U.S. Food and Drug Administration (FDA) drug approvals based largely on PRO data, such as for patients with myelodysplastic syndrome.

In clinical practice, however, the patient’s perspective is crucial to making the right treatment decisions for that patient. Quantifications of quality of life or patient-reported outcomes will offer more information for treatment-planning discussions, but in the clinic, the key is to understand how the available findings for different treatment options fit with a patient’s own desires and goals. Communication is key.


  1. Doctor JN, Huesch MD, Meeker D. Rethinking the value of survival: clinical trials should measure patient preferences for survival on entry to trials. J Clin Epi. 2016 May 7. doi: 10.1016/j.jclinepi.2016.03.030 [Epub ahead of print]
  2. Johnson DC, Mueller DE, Deal AM, et al. Integrating patient preferences into treatment decisions for men with prostate cancer at the point of care. J Urol. 2016 Jun 23. doi:10.1016/j.juro.2016.06.082 [Epub ahead of print]