What Outcomes Matter to Patients

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Abstract
Background. During the last quarter of the 20th century, it became feasible to measure and take into account the patient’s subjective preferences for health states and various outcomes. This has become increasingly relevant in the treatment of cancer, where patients are confronted with a life-threatening illness and may have varied treatment choices and outcomes. Objectives. To provide a framework for examining the outcomes that matter to patients from a clinician-researcher perspective. Considerations include the heterogeneity of the cancer patient population, the influence of the setting of care on patient outcomes, the range of outcomes that are often considered by patients and researchers, and possible study designs that should be considered to measure outcomes that are important to patients. The outcomes that matter to patients can broadly be classified into disease-focused and patient-focused outcomes. Conclusions. There are many challenges in the measurement of patient-focused outcomes, including consensus on what are the most important outcomes and the methods for their measurement. In addition, it is often difficult to integrate disease-focused and patient-focused outcomes in the same setting, particularly for use in clinical decision making. We need to develop some key strategies to enhance patient outcomes including (1) emphasis on evidence-based treatments whenever possible, as the best way of improving disease-focused outcomes; (2) the inclusion of patient preferences when different treatment alternatives provide equivalent disease-focused outcomes; and (3) the provision of adequate time for communication about disease-focused and patient-focused outcomes, with emphasis on the training of clinicians to facilitate these discussions.