Evaluation of effectiveness of survivorship programmes: how to measure success?

Abstract

Although the number of cancer survivors has increased substantially in the past two decades, the evidence base regarding the effectiveness of cancer survivorship programmes is inadequate. Survivorship programmes tend to evaluate their effectiveness by assessing changes in patient-reported outcomes, symptoms and health status, knowledge, and receipt of cancer surveillance in programme participants. However, more comprehensive and high-quality evaluations of survivorship programmes are needed, including assessments using a broader set of measures. These expanded evaluations can include assessments of programme structure; long-term outcomes, such as survival, quality-adjusted life-years, and functional status; receipt of social support, nutritional, rehabilitative, and fertility preservation services; programme value, including costs and avoidance of inappropriate resource utilisation; and ability of programmes to increase access to needed survivorship care services and health equity. In this Series paper, we provide examples of assessment measures for currently used survivorship programmes, discuss the rationale for and potential benefits of expanded types of evaluation measures, and identify how these measures correspond to several evaluation frameworks. We conclude that use of a common, expanded set of measures to facilitate broad comparisons across survivorship programmes and thorough and systematic evaluations will help to identify the optimal programmes for individual survivors, improve outcomes, and prove the value of survivorship care.