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

Sarah A. Birken; Robin Urquhart; Corrine Munoz-Plaza; Alexandra R. Zizzi; Emily Haines; Angela Stover; Deborah K. Mayer; Erin E. Hahn

doi:10.1007/s11764-018-0688-6

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

Sarah A. Birken, Robin Urquhart, Corrine Munoz-Plaza, Alexandra R. Zizzi, Emily Haines, Angela Stover, Deborah K. Mayer, Erin E. Hahn

Medicine

Research output: Contribution to journal › Article › peer-review

26 Citations (Scopus)

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.

Original language	English
Pages (from-to)	495-508
Number of pages	14
Journal	Journal of Cancer Survivorship
Volume	12
Issue number	4
DOIs	https://doi.org/10.1007/s11764-018-0688-6
Publication status	Published - Aug 1 2018

Bibliographical note

Funding Information:
Funding information 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.

Funding Information:
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. The authors declare that they have no conflicts of interest.

Publisher Copyright:
© 2018, Springer Science+Business Media, LLC, part of Springer Nature.

ASJC Scopus Subject Areas

Oncology
Oncology(nursing)

PubMed: MeSH publication types

Journal Article
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1007/s11764-018-0688-6

Cite this

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title = "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{\textquoteright} 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{\textquoteright} outcomes. Methods: We identified RCTs{\textquoteright} 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{\textquoteright} 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{\textquoteright} perspectives. Conclusions: RCTs of SCPs{\textquoteright} effectiveness have not assessed outcomes that stakeholders expect. To better understand SCPs{\textquoteright} effectiveness, future RCTs should assess outcomes of SCP use that are relevant from the perspective of multiple stakeholders. Implications for Cancer Survivors: SCPs{\textquoteright} 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.",

author = "Birken, {Sarah A.} and Robin Urquhart and Corrine Munoz-Plaza and Zizzi, {Alexandra R.} and Emily Haines and Angela Stover and Mayer, {Deborah K.} and Hahn, {Erin E.}",

note = "Funding Information: Funding information 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. Funding Information: 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. The authors declare that they have no conflicts of interest. Publisher Copyright: {\textcopyright} 2018, Springer Science+Business Media, LLC, part of Springer Nature.",

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AU - Haines, Emily

AU - Stover, Angela

AU - Mayer, Deborah K.

AU - Hahn, Erin E.

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N2 - 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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Survivorship care plans: are randomized controlled trials assessing outcomes that are relevant to stakeholders?

Abstract

Bibliographical note

ASJC Scopus Subject Areas

PubMed: MeSH publication types

UN SDGs

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