Introduction: The subjective experience of cancer survivorship can be assessed by various patient-reported outcome (PRO) methods, including measures of symptom burden and health-related quality of life (HRQOL). Symptom burden includes the presence and severity of multiple symptoms and the level of distress caused by symptoms that go untreated or unrelieved. The concept of symptom burden is more limited in scope than HRQOL but may provide information that better describes the status of various stages of survivorship. This paper contrasts symptom burden with general HRQOL and addresses the importance of including symptom burden as research tool throughout the trajectory of cancer survivorship.
Methods: We summarized studies that illustrate both HRQOL and symptoms as outcomes of treatment and of descriptive studies of cancer survivorship. Survivorship was operationally defined as beginning at the completion of primary anticancer treatment.
Results: HRQOL and symptom burden measures both provide meaningful but conceptually different data. Both types of measures are important in portraying aspects of cancer survivorship over time, although symptom burden may provide sufficient information to inform treatment decisions and identify long-term effects of cancer therapies.
Conclusions: Cancer survivors are at risk for multiple severe and persistent symptoms, and assessing and monitoring the severity and impact of these multiple symptoms is critical to understanding the survivorship experience. The inclusion of multiple symptom measures along with the development of new and better methods of long-term symptom tracking in survivors is a critical step in improving the heath status of survivors.
Implications for cancer survivors: Late and long-term effects seen in cancer survivors have historically been understudied. Symptom burden is an important area of assessment that can be used to specifically describe the symptoms that distress survivors. More descriptive data in this growing population may help identify biological processes in symptom production and maintenance, and facilitate in the development of better treatment and prevention to enhance cancer survivorship.