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Helping Patient-Reported Outcomes Be “At Home” in Clinical Practice

Yuan, Changrong, PhD, RN, FAAN

doi: 10.1097/NCC.0000000000000655
DEPARTMENTS: Guest Editorial

Editorial Board Member, Cancer Nursing School of Nursing, Fudan University Shanghai, China

This research was supported by the National Natural Science Foundation of China (project no. 71473262).

Patient-reported outcomes (PROs) have been studied for several decades in oncology, including how to embed their use into routine clinical practice. The expectation by doing so is that cancer patients will be more likely to receive individualized healthcare.1 However, the clinical use of PROs is still nascent; we need solutions to advance their use clinically. I attended a roundtable seminar on PROs in Canada 2 years ago. As the routine clinical collection of PROs had been ongoing for 5 years in several hospitals in Ontario, Canada, the involved healthcare professionals thought it timely to reflect on the actual, practical value and benefit of the PROs and to address gaps between the achieved and expected value of the routine clinical collection of PROs. All stakeholders, including physicians, nurses, and patients and their caregivers, were invited to the roundtable. An exchange between a physician and a 6-year breast cancer survivor haunts me. The physician said that he totally agreed that symptoms such as pain and anxiety were important to both patients and health professionals and worth reporting. However, little clinical significance could result from reporting cancer-related fatigue and other unavoidable and uncontrollable symptoms because it was natural for cancer patients to suffer from fatigue as a result of cancer and its treatments. Immediately, the breast cancer survivor responded with an emotional tone, even angry. She said that reporting her level of fatigue was more than important to her because, on the one hand, it was an effective way to express herself, and on the other hand, she felt like her apathetic demeanor could be forgiven because the physician was made aware of how fatigued she was. “It’s hurting me that I found physicians didn’t care about my feelings at all,” she said in a trembling voice.

I realized then that at the core of the successful clinical practice of PROs was how much consensus or mutuality could be achieved between health professionals and cancer patients. Clinicians focus more on survival rates and the development of treatments; patients question “how long may I survive?”; “how much distress am I going to suffer?”; and “are physicians caring about my suffering and my feelings, or are they even listening to me?” The focus and perspectives of patients and health professionals differ because of how they view the disease. What we need to do is dig broader and deeper to locate the intersection points between the health professional’s and patient’s perspectives. Patient-reported outcomes can help to identify the points of intersection. The more intersection points that are identified, the more valuable the role that PROs could have clinically. That is, educate the clinical communities as well as patients on the science of PROs to improve their knowledge and beliefs on PROs.

The present knowledge and attitudes about PROs in health professionals are insufficient for PROs to have a clinical “home” or place. This is because of multiple factors, including doubting the validity or efficiency of PROs in clinical decision making and fearing that a new medical practice is sure to make their workload heavier, which also leads to the fear of changing. Patients “new” to being patients lack essential knowledge on self-report and lack sufficient recognition on the value of PROs. Because of these factors, patients may be hard to motivate to complete PROs if they are burdensome to patients. Therefore, training programs targeting both health professionals and patients should be developed accordingly to deal with barriers to the full use of PROs in cancer care. First, the value of PROs, including the value to the patient-health professional relationship, their clinical value to decision making, and patient management, should be reinforced repeatedly in the clinical setting to enhance the valuing of PROs. Second, a program of PRO use should be adapted to the clinical setting with the engagement and support of administrators and policy makers. Thirdly, diverse training strategies, such as a workshop, use of opinion leaders, posters, and web-based education about PROs, should be used together to help embed PROs into the clinical setting.

All in all, although it is not easy to turn PROs into a routine in clinical care, most barriers to doing so are potentially modifiable and can be addressed by attitudinal changes at the levels of the patient, the clinician/healthcare team, and the organization.2 We are all working hard to make PROs be a routine part of clinical practice so that all can realize the benefits of PRO use.

Changrong Yuan, PhD, RN, FAAN

Editorial Board Member, Cancer Nursing

School of Nursing, Fudan University Shanghai, China

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References

1. Tzelepis F, Sansonfisher RW, Zucca AC, Fradgley EA. Measuring the quality of patient-centered care: why patient-reported measures are critical to reliable assessment. Patient Prefer Adherence. 2015;9:831–835.
2. Josephwilliams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(3):291–309.
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