and expensive, and very often care is poorly coordinated. Cancer treatment is often provided in isolation from other care, even though cancer patients tend to be elderly, with multiple comorbidities and health care needs. Oncology professionals at the onset of treatment provide some initial communication to the primary care physician, but during treatment such contact may decline. Given the demands of cancer treatment, most patients do not have time to see their primary care physician, and consequently cancer treatment may seriously disrupt patients’ routine care and distance them from the care system to which they will have to return following their treatment.
The development of evidence-based guidelines has been impeded by the lack of research on the late effects of cancer therapy. The American Society of Clinical Oncology (ASCO) is developing guidelines for many important domains of survivorship care, but it has often had to rely on descriptive cohort studies as an evidence base. Even in the childhood cancer arena, in which survivorship issues have long been recognized, there are few studies on which to base guidelines. Support for research in this area is needed to advance understanding of cancer’s late effects.
Follow-up care plans, to the extent that they have been developed and used, do not have a standard format and have focused on surveillance for recurrence. ASCO has developed guidelines for breast and colorectal cancer that include recommendations for follow-up for recurrent disease. These guidelines, however, do not deal with other complex and multidimensional issues facing survivors. Absent from most guidelines, for example, is information on health promotion and disease prevention. As cancer survivors live longer, they will need comprehensive health care that includes preventive services to address their cancer and other chronic conditions. In the area of infertility, which is a concern of many cancer survivors, many patients have been told, “You should be happy just to be alive.” In this example, potential late effects need to be addressed during treatment planning to help ensure that individuals make informed choices and have an opportunity to lead full, normal lives to the extent possible.
Why does cancer care present such a challenge? Health services researchers engaged in cancer-related quality of care studies find that they have to request as many as three to five medical charts to examine the content of an episode of care. Cancer treatment is often prolonged and may occur in numerous outpatient and inpatient settings, some of which are specialized treatment facilities. There may be very limited communication among the treating physicians, and each of the multiple medical records may document only a portion of the treatment history. In large urban areas, patients may be operated on at one institution, have their chemotherapy at an oncologist’s office, have radiation therapy at another institution, and then see a primary care physician somewhere else. Cancer care can be very