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 (continued)

Mastectomy Decision-Making in Early Breast Cancer

Steven J. Katz, MD, University of Michigan, Ann Arbor, Michigan, presented data about contralateral prophylactic mastectomy (CPM) decision-making from the same iCanCare study.9 CPM has been increasing in women with breast cancer who do not have an increased risk of a secondary primary cancer, and will not improve survival in this subgroup of patients. Outcomes that were included in this analytic sample of 2,469 patients were consideration of CPM, type of surgery, and patient knowledge about treatment.

Of patients receiving CPM, two-thirds believed that CPM had a survival advantage over breast-conserving surgery (BCS), which is not true; one-third believed CPM improves survival for all women. Of patients with average risk for a secondary primary cancer, 28% said their surgeon told them it would improve survival. Patients who preferred their doctor make treatment decisions for them or whose doctor recommended against CPM were much less likely to have CPM. This analysis shows many patients in this population have unrealistic expectations about survival benefits of CPM, and low knowledge about treatment tradeoffs. Deliberation about CPM after diagnosis may be a challenge for surgeons, and requires better communication and patient education if unnecessary procedures are to be avoided.

Patient-Facing Systems

Roxanne E. Jensen, PhD, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC, gave an overview of patient-facing systems in cancer care. Patient-facing systems should be simple and fast to use, allow seamless integration into electronic health records (EHRs), be suitable for multiple uses, e.g., clinical practice, quality improvement, and research, and be engaging for patients and providers (Figure 1).

Ease of use is important, and page layout matters, too (Figure 2). As tools move to mobile devices like phones, a vertical format may be more useful than a horizontal one.

Dr. Jensen and colleagues have reviewed PRO systems in clinical care.10 About two-thirds of these were meant for use during treatment, and a quarter were limited to specific, more common cancers, and measured endpoints specific to those diseases. Most systems were aimed at a physician audience who were most likely to have input into which questions to ask as well as access to reports. For example, providers might select questions about gastrointestinal symptoms because that is what they want to track during chemotherapy, but systems are not designed for patients to choose what symptoms they are interested in following.

Dr. Jensen said, “A big trend I saw with these reports is that about half the patients couldn’t see their scores. There were only 3 systems where caregivers had access and they tended to be those that focused on end of life care or hospice where the caregiver had a more active role with the patient. It was surprising to me that patients weren’t able to see their scores. We are beginning to ask how can we give the information to patients directly.” She said that patients also want to share their information with caregivers so they can have a better picture of how they are feeling. “I get so much enthusiasm for people seeing their reports and scores and using them, I think this will be an exciting area to be developed in the future.”

Dr. Jensen says she observes a lot of patient enthusiasm for filling out forms, but it’s discouraging if patients don’t see anything happening from the hours they spend answering questions. “This goes against what we are trying to do with these systems. This is a developing area of research. Everyone has so much technology now, things that were so hard to do from a research perspective 5 to 10 years ago are now so simple on everyone’s smart phone. We are in a unique opportunity to involve the patients.”


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