Patient-reported outcomes (PROs) are defined as "a measurement of any aspect of a patient's health status that comes directly from the patient (i.e., without the interpretation of the patient's responses by physician or others)."1,2 Researchers and funders of research are increasing their expectations of one or more study aims being incorporated into adult and pediatric cancer research protocols to document the patient's perceptions of their cancer care experience (such as their health-related quality of life and symptom distress during treatment). Patient-reported outcomes measured concurrently with new drug trials are also being requested by agencies that have key roles in the approval process of new drugs.3

Anticipated benefits of incorporating PRO into cancer research protocols are that patient preferences, perceptions, and values will be made explicit to researchers who develop the sequel clinical research protocols and to clinicians who provide the care to the studied patient groups. Clinicians will likely integrate the explicit patient preferences and values into their patient care, and improvements in care outcomes will result, such as (1) more effective patient/family and clinician communication, (2) more collaborative treatment decision making involving the patient/family and clinicians, (3) more effective and appropriate care for a patient or a patient group, and (4) improved patient satisfaction with clinical care.1,4,5 The use of PRO will also doubtlessly reveal the true benefits, burdens, and unknown morbidities that patients experience when they participate in cancer research of any kind.

The carefully analyzed patient reports of their cancer care experiences will help us to develop improved study designs and more sensitive measurement instruments that match the individuals in our study samples and their clinical contexts. We as researchers and clinicians are quite conscious of the need to match the PRO instruments by a number of considerations, including patient culture, sex, age, and cognitive abilities. Remarkable progress has been made in the development, testing, and use of PRO in almost all aspects of cancer research, as is so clearly conveyed in the published works contained within each issue of Cancer Nursing: An International Journal of Cancer Care. The single exception to this PRO progress is in end-of-life research in pediatric oncology.6 Much more PRO-related research remains to be conducted in that subspecialty. Patients of all ages with cancer have generously reported their perceived cancer care outcomes at impressive rates across studies. Their participation rates indicate that it is possible to achieve the acknowledged preference in oncology-to have a patient of almost any age rate the extent to which an aspect of treatment is problematic (or not).

The evolution of soliciting PRO in clinical research protocols is a stunning and exciting advancement in our science-an advancement contributed hugely by cancer nurse researchers and clinicians-but by itself is an insufficient methodologic strategy to capture the complexities of cancer care outcomes. We risk being so focused on PRO that we will overlook the need to document and understand as many aspects (viewpoints) of the cancer care experience as is possible. Cancer care is a relationship experience. It demands interactions between patients and their informal and formal caregivers. Cancer care is directly informed by those interactions. A portion of our PRO literature in oncology compares the ratings of care by patients and their family caregivers. Consistently, the conclusion reached by researchers is that caregivers underestimate the cancer patient's health-related quality of life because the patient's self-reported scores are higher (indicating better health-related quality-of-life scores). Rather than concluding that a rater may be in error because of differences with another rater, we need to learn why the raters give the scores that they report and why they think each other gave different ratings. Soliciting scores on PRO instruments is insufficient to give guidance to cancer care. We need to be able to interpret those scores in light of the total cancer care experience. A recent study of health-related quality of life indicated that pediatric patients are more likely to base their ratings on a recent event, whereas their family caregivers base their ratings on a series of events spanning a longer period of time.7 If this difference is reported in additional studies, it could have implications for the measurement of this type of PRO in pediatric oncology and for the interpretation of the care ratings. The advances made in the measurement of PRO need to continue, but when the research opportunity presents, we need to concurrently solicit and interpret the perspectives of others involved in the care of cancer patients. The editorial board of Cancer Nursing welcomes research reports that document the patients' self-reports and the perspectives of others involved in the patient's clinical cancer care.

My very best to you.

Pamela S. Hinds, PhD, RN, FAAN

Editor in Chief, Cancer Nursing(TM)

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