In recent years awareness of the symptom burden experienced by many cancer patients has grown [1, 2]. At some time in their illness, symptoms such as fatigue, pain, nausea, depression, and hopelessness are very likely to occur. These symptoms can be disabling and they can even limit treatment. There is a growing body of literature demonstrating that interventions for these troubling symptoms are effective [3, 4]. These interventions can improve the patient's quality of life by enabling the patient to function better at home and at work.
While there is awareness among providers of symptom distress experienced by patients and there are effective symptom interventions, the problem in the day-to-day care of cancer patients is symptom identification [5]. At a recent meeting convened by the National Institute of Health, it was concluded that little is known about the actual frequency and validity of symptom screening for common cancer and cancer treatment related symptoms. In the summary statement there was expert consensus about the need for routine screening for symptoms from the point of diagnosis. Assessments should be repeated during the course of treatment. Symptom data should be integrated into routine care of cancer patients.
Community Cancer Care (CCC) is an organization with home offices in Indianapolis, Indiana, that provides professional services and program development services to 23 hospitals throughout the state of Indiana. Professional oncology services are provided by 18 medical oncologists-hematologists who are employed by CCC or serve under contract. One psychiatrist, an advanced-practice nurse, and a certified nurse are dedicated to quality-of-life efforts. Each year, an average of 2500 new patients are seen in the network of clinics. At any given time, approximately 16,000 patients are receiving care in the CCC network. While the CCC has clinics in metropolitan Indianapolis, rural outreach and program development in rural hospitals have been a major focus of CCC since its inception in 1983. Twenty-one clinics are located in Indiana towns with populations less that 16,000. Twenty counties served by CCC have populations less than 45,000.
Using paper and pencil scales we unsuccessfully tried to install a symptom screening process into the daily clinic workflow. The clinic process was slowed. Some patients could not complete the instruments. Patients' report of their symptoms could not be analyzed quickly and placed on the chart for the provider to use. Symptom screening was limited to the day of the clinic visit. We could not easily evaluate a patient's status between office visits. Trends in symptom occurrence were difficult to identify. With pencil and paper instruments it was a laborious and expensive process to establish a database for our patients' symptom reports, a necessary step in program evaluation.
Because of these limitations, our goal is to develop a technology solution to gather, analyze, and present symptom reports to physicians and nurses. Several feasible options for reporting symptoms would include either a touch-tone telephone or an Internet connected computer. Because of well-documented differences between access to the telephone service and the Internet [7], we conducted a survey in urban and rural oncology clinics to determine how many of our network patients had access to the required communication technology. For patients who had access to the Internet we were interested in identifying predictors of access as well as patients' willingness to use the Internet for symptom reporting and other cancer-related reasons.