1. epidemiology, social-behavioral, and health services research that defines the area and its impact, and

  2. symptom research that examines components of the problem from a more traditional biomedical perspective.

The review covers recent research findings in each area, examples of needed research, a description of barriers to organizing and funding research, and suggested policy for changes in priority and structure that may improve and focus research of this type.


The following methods were used to gather data for this chapter:

  • review of recent research (Medline databases),

  • review of current National Institutes of Health (NIH) funding using the NIH CRISP retrieval system,

  • review of currently active clinical trials using the Clinicaltrials.gov database, and

  • survey responses from researchers in the field.

Epidemiology and Descriptive Research: Prevalence, Impact, and Management of Symptoms

Patients with advanced cancer typically experience multiple symptoms related to cancer and cancer treatment. These symptoms can include physical (e.g., nausea, dyspnea), cognitive (e.g., delirium, memory problems, impaired concentration), and affective (e.g., depression, anxiety) experiences associated with the disease and its treatments. Symptom severity is related to the extent of disease and the aggressiveness of therapies such as surgery, chemotherapy, radiotherapy, and biological therapies. Common symptoms of cancer and cancer treatment significantly impair the daily function and quality of life of patients. Pain is a good example. When pain is present, it adversely affects patients’ mood, activity, and ability to relate to others (Serlin et al., 1995). Similarly, fatigue, gastrointestinal symptoms, cachexia, anorexia, shortness of breath, and psychological distress add tremendously to the distress that patients experience.

At present, the severe distress, multiple symptoms, and inadequate treatment faced by many patients at the end of life are well documented. Several studies have examined cancer-related symptoms in patients with advanced disease. Coyle and colleagues (1990) found that fatigue, weakness, pain, sleepiness, and cognitive impairment were frequent symptoms of patients with terminal disease enrolled in a supportive care program. Fatigue (58

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