THE PROBLEM Agency representatives report the lack of highly competitive applications in the areas of end of life and symptom control. Funders, as well as reviewers, often state that such applications are not competitive with “mainline” applications. Many health care professionals acutely interested in doing research with very ill populations by virtue of their clinical contacts are not well prepared in clinical research methods. Although they often pose clinically important, reasonable, interesting, and potentially researchable questions, the methods they propose are inappropriate or lacking in scientific rigor. Not surprisingly, most of the studies in the palliative care literature reviewed for this chapter were (1) retrospective chart reviews (2) studies of caregiver’s estimates of patient distress, and (3) studies of the attitudes and opinions of health care professionals, most of which would have benefited from improved research methods. Another portion of the literature consists of a presentation of care principles with no support from clinical trials. There is a need for a larger body of well-trained researchers who have advanced disease and symptom issues as their focus of interest to conduct their own studies and to collaborate with clinicians interested in carrying out research
POTENTIAL SOLUTIONS Both short-term and long-term solutions to the small supply of investigators are required. In the long term, larger numbers of researchers focused on end-of-life and symptom control issues must be trained. A plan for developing these researchers, including estimates of the needs within various basic, behavioral, clinical, and health services research disciplines, should be laid out as soon as possible. There are many training mechanisms and career tracks in place at the NIH, at NCI, and also at the ACS that could provide for the training and development of these researchers, but they have yet to be applied to advanced disease and symptom control.
With so few investigators now in the field, there is also an immediate need for better communication among those doing this kind of research, both from one institution to the next and from one discipline to another. Several possibilities exist (e.g., research interchanges at regularly scheduled cancer research and clinical meetings). There may also be a place for new research organizations that focus on research issues related to advanced disease.
Symptom-focused cross-disciplinary meetings could also greatly facilitate communication. As an example, M.D. Anderson recently sponsored such a meeting on fatigue and cancer. Researchers shared data on fatigue measurement and prevalence, potential mechanisms (including anemia, endocrine disturbances, cytokine levels, neurotransmitters), and current and