Survivorship care plans: are randomized controlled trials assessing outcomes that are relevant to stakeholders?

Abstract

Purpose: The purpose of this study was to compare outcomes assessed in extant randomized controlled trials (RCTs) to outcomes that stakeholders expect from survivorship care plans (SCPs). To facilitate the transition from active treatment to follow-up care for the 15.5 million US cancer survivors, many organizations require SCP use. However, results of several RCTs of SCPs’ effectiveness have been null, possibly because they have evaluated outcomes on which SCPs should be expected to have limited influence. Stakeholders (e.g., survivors, oncologists) may expect outcomes that differ from RCTs’ outcomes. Methods: We identified RCTs’ outcomes using a PubMed literature review. We identified outcomes that stakeholders expect from SCPs using semistructured interviews with stakeholders in three healthcare systems in the USA and Canada. Finally, we mapped RCTs’ outcomes onto stakeholder-identified outcomes. Results: RCT outcomes did not fully address outcomes that stakeholders expected from SCPs, and RCTs assessed outcomes that stakeholders did not expect from SCPs. RCTs often assessed outcomes only from survivors’ perspectives. Conclusions: RCTs of SCPs’ effectiveness have not assessed outcomes that stakeholders expect. To better understand SCPs’ effectiveness, future RCTs should assess outcomes of SCP use that are relevant from the perspective of multiple stakeholders. Implications for Cancer Survivors: SCPs’ effectiveness may be optimized when used with an eye toward outcomes that stakeholders expect from SCPs. For survivors, this means using SCPs as a map to guide them with respect to what kind of follow-up care they should seek, when they should seek it, and from whom they should seek it.