March 2016 Edition Vol.11, Issue 3

Using Patient-Reported Outcomes (PRO) to Improve the Quality of Cancer Care

Using Patient-Reported Outcomes (PRO) to Improve the Quality of Cancer Care

By Lynne Lederman, PhD


At the American Society of Clinical Oncology (ASCO) Quality Care Symposium, held February 26 to 27 in Phoenix, Arizona, the contribution of patient reported outcomes (PRO) to quality in cancer care was discussed during two breakout sessions. PRO are patient self-reported measures of symptoms, quality of life (QoL), or functional status. Although measures of how patients feel have historically not been included in quality assessment, lately there have been efforts to develop PRO performance measures, including formation of an ASCO workgroup to integrate them into ASCO quality programs.1 These efforts could be considered a response to the Institute of Medicine’s report on cancer care as a system in crisis where care is not patient-centered.2

The need for PRO measures has been demonstrated repeatedly, e.g., in a recent randomized, controlled clinical trial in patients undergoing outpatient chemotherapy for advanced solid tumors. Those who were assigned to report 12 common symptoms to their healthcare providers had a greater improvement in health-related QoL than patients assigned to symptom monitoring at the discretion of clinicians.3 The voice of the patient is particularly important in monitoring therapy-related toxicity because the frequency and severity of adverse reactions are underestimated and underreported by physicians.4,5

PRO tools that are available with applicability to oncology include PROMIS® (Patient Reported Outcome Measurement Information System),6 and the PRO version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).7 Others are discussed here.

Effect of Risk Perception on QoL

Sarah T. Hawley, PhD, MPH, Cancer Surveillance and Outcomes Research Team, University of Michigan, Ann Arbor, Michigan, presented preliminary results of a study on recurrence risk perception and quality of life after treatment of breast cancer.8 Although the risk of distant recurrence after treatment for early stage breast cancer is very low, women often misunderstand and overestimate their risk. Little is known about how women are given information about their risk or about the effect of overestimation of risk on their QoL.

Objectives of the iCanCare study (P01CA163233) were to use both numeric and descriptive methods to describe the extent of overestimation of risk in women with newly diagnosed early stage breast cancer, assess factors associated with overestimation, and look at the association of overestimation of risk with patient-reported QoL. Patients were identified from those reported to SEER (National Cancer Institute Surveillance, Epidemiology, and End Results) registries in Los Angeles County and Georgia who were treated in 2013 to 2014. The analytic dataset included 1,022 women with ductal carcinoma in situ (DCIS) or low risk invasive (LRI) stage I breast cancer.

Patients were asked to estimate their perceived risk of recurrence; the numeric estimate could be 0 to 100%, the descriptive risk was a choice of very low/low/moderate/high/very high. Overestimation was defined as 10% DCIS and 20% for LRI, or at least moderate for either disease. QoL was assessed by the PROMIS Global QoL short form; worry frequency (in the last month) about cancer coming back was classified as not at all to always.

In the total population, over a third of patients overestimate their risk of recurrence, and those with DCIS are more likely to overestimate than those with LRI. Patient factors associated with numeric overestimation include being black, and having less education. Being currently bothered by symptoms was associated with both numeric and descriptive overestimation. Worry frequency is also associated with overestimation. Patients who overestimate both numeric and descriptive risk are 10 times as likely to worry frequently as were those who correctly estimated their risk.

There are limitations to this study, including the lack of a pre-diagnosis measure of anxiety, and the small sample size from limited geographic areas. Nevertheless, women with favorable prognoses overestimate their risk of distant recurrence, and this is associated with reduced QoL. This study suggests the need for clinicians to be aware of this overestimation and its effect on QoL metrics and to ensure patients understand actual risk. There remains a need to understand the impact of overestimation on long-term patient behavior.

Dr. Hawley said, “We are exploring some of the patient-reported reasons for indicating why they think their risk is what it is. We are also interested in exploring the impact of overestimation on behaviors such as initial treatments and systemic treatment.” She said that her group is actively developing tools for patients and clinicians to help patients understand the risk of distant recurrence, and clinician-directed tools to provide guidance in how to communicate complicated risk information to patients. “We are also exploring the degree to which clinicians provide patients with resources to help them manage their worry, especially in the survivorship period, and thinking about interventions that can be directed toward that outcome. We also hope that through dissemination of our findings, more attention will be paid to ensuring that patients have an accurate understanding of their actual risk of distant recurrence.”

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