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"How Bad Is It?": The Role of Nursing Research in Prognostication

doi: 10.1097/NCC.0b013e3181d1c8d1
DEPARTMENT: From the Editor

The ability to individualize or personalize cancer treatment at the time of diagnosis or relapse based on risk features (ie, chromosomal abnormalities; patterns of gene expression; clinical, demographic, and biologic characteristics; and response to preliminary treatment) has altered how cancer treatment is prescribed and administered.1,2 Clinicians, most usually physicians, share the information about the risk features with patients and their family members and link these features to the prescribed treatment and to prognosis (meaning, the likely course and outcome for the specific patient based on established findings from very similar and previously treated individuals). When cancer becomes advanced and incurable, clinicians (again, most commonly the physicians) provide cancer patients with prognostic information. Sharing prognostic information is done using words of caring and words of probability (percentages, odds, and time units).3,4 Patients and family members describe wanting this kind of prognostic information and preferring to have it delivered by their physician. Physicians report that a common response from patients newly diagnosed is: "How serious is this?" From patients with advanced disease: "How much time do I have?" And from their family members: "When will my loved one die?" Medical literature includes multiple studies of prognostic models to help physicians factually address such important patient and family queries.5-7 To summarize, medical science identifies disease risk features, physicians communicate the prognostic information to patients and families, and patients and families prefer to receive this kind of information from their physicians. What then is the role of the cancer nurse researcher in prognostication (a medical term), that is, by role and by patient preference, in the sole domain of another discipline? Even here under these circumstances, there is a place for and a contribution to be made by cancer nurse researchers.

The role of the cancer nurse researcher in the clinical context of prognostication is the same as it would be in any clinical care situation that includes the needs of others affected by the cancer experience. The nursing research role is to produce new knowledge that can improve the process of care and the care outcomes that are part of the clinical context of concern. The expanded role includes translating new and tested knowledge into the real care context and to evaluate (from the perspectives of all affected) what difference the new knowledge makes in the clinical context. The role includes identifying all of the human interfaces in the clinical situation of concern, the potential risks and benefits of those interfaces, and the knowledge needed for those involved at the interfaces to receive the maximum benefits of that knowledge. Those at the interface of prognostic information who could benefit include patients, family members (present and not present), all members of the cancer care team, others in communities and social groups, and new generations of healthcare professionals. Efforts to generate this new knowledge will include interdependent, dependent, and independent role components, and the cancer nurse researcher needs to be skilled in all 3 components and able to recognize when one component is more called for than the others. To be able to uncover certain new knowledge in some situations (using here the example of prognostication that most typically is conceived of as involving the physician, the patient, and the patient's family), the cancer nurse researcher will need to be invited into a clinical situation and so must be skilled at accepting an invitation.

Although we as cancer nurse researchers are not the discipline with the assigned or preferred role of delivering the prognostic information, we are able to contribute by identifying the interfaces before, during, and after the sharing of prognostic information and by identifying the immediate, intermediate, and longer-term effects of the prognostic experience on those involved and affected. We are, for example, able to identify how words of hope (instead of words that convey abandonment to the patient and family) that speak to our shared commitment to preventing suffering included in the prognostic information produce quite different and important experiences at the time and later. We are able to measure and interpret quality of life before, during, and after the prognostic information sharing and how focusing on quality of life and living helps support communication among all affected at this time. We are able to identify characteristics of individuals and groups of patients or family members that could become prognostic factors themselves. We are also able to document information about what patients and families can expect during each phase of cancer treatment and ways to share that information so that they may better focus on living while experiencing a life-threatening illness. In short, where there is a human interface, there is a role for new knowledge and ultimately for the transfer of new knowledge to clinical care. And there, at the interface, is where the clinical nurse researcher needs to be.

My very best to you,

- Pamela S. Hinds, PhD, RN, FAAN

Editor in Chief, Cancer Nursing™

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