Cancer research is a global priority driven by a crushing clinical reality. The burden of cancer mounts daily, complexity of treatment escalates, and persistent and delayed effects of cancer and its treatment endure for millions of people worldwide. Cancer is now the third leading cause of death worldwide, with more than 12 million new cases and more than 7.5 million deaths estimated by GLOBOCAN for 2008.1,2 Those of us in resource-rich nations with research-intensive academic centers bear witness to the ever more rapid pace of discovery of minimally invasive procedures, targeted therapies, combined modalities, and outpatient treatment regimens. Those in less well-resourced societies and health systems might only hear of such new developments and wonder about the possibilities. The human scale of cancer is often difficult to grasp, but individual and family experiences, gaps in care, differences in practice, and the burden of cancer treatment and survivorship make the human scale of cancer palpable for nurse researchers as it is for our clinician colleagues.
The global burden of cancer treatment and survivorship impresses me greatly. Sheer need and unanswered questions combine before my eyes to shape the arduous work that is oncology nursing practice. In the clinic, at home, and in the hospital, clinician colleagues attempt a delicate balance of evidence, expedience, and habit as they grapple with the practicalities of little time and great need. Some clinical oncology nurses benefit from abundant resources, but in most cases and to varying extents, many face a clinical reality informed by limited evidence and few resources. Oncology nursing research-although it boasts wonderful accomplishments-lags behind the clinical reality. Increasingly, molecularly focused treatment research drives the clinical environment with relatively swift diffusion and significant public interest.
Cancer nursing research lags as specific populations of people affected by cancer grow in number, across diverse societies, facing often disparate and rapidly changing treatment regimens and patchy supportive care services. I attribute this lag to a composite impact of isolation of variables necessitated by positivist quantitative science and the fidelity of well-established research trajectories combined with disjunction between the clinical and scientific domains of nursing.
Quantitative research values cleanly separated and defined variables and circumspect dissemination of findings once we have controlled what might confound and manipulated what might create effect. The challenge for us as cancer nurse researchers is that the burden of cancer treatment is not a separable human experience. Cancer treatment is a whole, encompassing experience among those for whom it is their experience. Similarly, the burden of cancer treatment is not an experience that waits. It is one of today for millions around the world.
What can nurse researchers do with this conundrum? I suggest building on the elements of clinical science that we know get us closer to reflecting clinical reality in our research. I offer 5 specific ideas to achieve this:
1. Listen to people who have cancer. Hearing experience firsthand and listening for pattern and divergence establish relevance, frame current research, and redirect trajectories.
2. Invest in partnerships with nurse clinicians. They are worth the time and effort involved, although they generally require the researchers to take the initiative. Such partnership might be as simple as talking to clinician colleagues on a regular basis to hear what concerns, frustrates, or challenges them the most.
3. Cultivate nimbleness in research design, development, and implementation. Nimble response requires a team that thinks and challenges critically and then thoughtfully and swiftly. Combined with strong clinical partners in diverse settings, nimble response can help the right team think "symptom cluster or cascade of toxicity and symptom?" and then take action.
4. Reconsider separation. As with the example of symptom cluster versus a clinical cascade of toxicity and symptoms, testing familiar concepts to gauge current relevance is fundamental to capturing today's burden of cancer treatment. Reconsidering separation might lead to evaluating whether measurement is sufficient or if description or interpretation better suits the phenomenon of interest. Qualitative and multimethod paradigms are then waiting to help us improve nursing practice, patient experience, and clinical outcomes.
5. Avoid overused proxy variables whenever possible. For example, with cancer as a disease of aging, current use of chronological age as a variable of interest is astoundingly unscientific. An individual's birthday has only tangential relation to the cancer, cancer treatment, and the outcome and other effects of that treatment. More commonly, age is a mislabeled proxy for frailty, functional status, or generation among other concepts.
In summary, the equation that involves precisely defined objects of study-separated only as clinical reality dictates-and applied in appropriately inductive inquiry or deductive investigation by reflexive teams who have wise clinical partners and who listen to people with cancer is more likely to reflect the clinical reality of today and tomorrow.
- Sarah H. Kagan, PhD, RN
Lucy Walker Honorary Term Professor of Gerontological Nursing
School of Nursing Clinical Nurse Specialist
Abramson Cancer Center
University of Pennsylvania, Philadelphia