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

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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.

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Funding

This publication was supported by Grant Number 15014 from the Cancer Research Network 2015 Opportunity Fund Program and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant KL2TR001109. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the awardee, subawardee, the Cancer Research Network, or the National Institutes of Health.

Author information

Authors and Affiliations

  1. Department of Health Policy and Management, Gillings School of Global Public Health, Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, 1103E McGavran-Greenberg Hall, 135 Dauer Dr., Chapel Hill, NC, 27599, USA

    Sarah A. Birken, Alexandra R. Zizzi, Emily Haines & Angela Stover

  2. Department of Surgery, Dalhousie University, Halifax, Canada

    Robin Urquhart

  3. Department of Research and Evaluation, Kaiser Permanente Research, Pasadena, CA, USA

    Corrine Munoz-Plaza & Erin E. Hahn

  4. School of Nursing, Lineberger Comprehensive Cancer Center, The University of North Carolina, Chapel Hill, NC, USA

    Deborah K. Mayer

Authors
  1. Sarah A. Birken
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  2. Robin Urquhart
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  3. Corrine Munoz-Plaza
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  4. Alexandra R. Zizzi
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  5. Emily Haines
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  6. Angela Stover
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  7. Deborah K. Mayer
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  8. Erin E. Hahn
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Corresponding author

Correspondence to Sarah A. Birken.

Ethics declarations

The Institutional Review Board at the University of North Carolina at Chapel Hill exempted the study from human subjects review. The Research Ethics Board at NSHA and the Institutional Review Board at KPSC approved the study.

Conflict of interest

The authors declare that they have no conflicts of interest.

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Birken, S.A., Urquhart, R., Munoz-Plaza, C. et al. Survivorship care plans: are randomized controlled trials assessing outcomes that are relevant to stakeholders?. J Cancer Surviv 12, 495–508 (2018). https://doi.org/10.1007/s11764-018-0688-6

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  • DOI: https://doi.org/10.1007/s11764-018-0688-6

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