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Barriers and facilitators to the use of survivorship care plans by hematopoietic stem cell transplant survivors and clinicians

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Abstract

Purpose

Survivors of hematopoietic stem cell transplants (HSCT) have complex care needs for the remainder of their lives, known as the survivorship period. Survivorship care plans (SCPs) have been proposed to improve care coordination and ultimately survivorship outcomes. We explored the barriers and facilitators of SCP use among HSCT survivors and their clinicians in order to develop more useful SCPs for the HSCT context.

Methods

Analogous surveys regarding perceived barriers to and facilitators of SCP use based on a sample SCP for a female allogenic HSCT survivor were administered to HSCT survivors and non-transplant oncology and primary care clinicians.

Results

Twenty-seven HSCT survivors and 18 clinicians completed the survey. The main barriers to SCP use were lack of awareness of SCP existence, uncertainty regarding where to find SCP, unclear roles and responsibilities among healthcare teams, length of SCP, and difficultly understanding SCPs. The facilitators of SCP use were increased understanding of survivorship care needs, clarified roles and responsibilities of survivors and clinicians, SCPs that are readily available and searchable in electronic health record, increased awareness of SCP existence and provision to all survivors, and if the SCP is survivor-specific and up-to-date.

Conclusions

Much of the work regarding SCPs has looked at barriers to creation and provision; however, our study examines factors influencing use of SCPs. By determining the barriers and facilitators surrounding SCP use for HSCT survivors and their clinicians, we can create SCP templates and clinical workflows to optimize SCP use, ideally leading to better outcomes for HSCT survivors.

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Data availability

Please email Dr. Mary Sesto (mesesto@medicine.wisc.edu) for more information.

Code availability

N/A.

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Acknowledgements

The authors would like to thank the following: participating patients, clinicians, members of the Hematologic & Bone Marrow Transplant Disease-Oriented Team, Cancer Prevention and Outcomes Data Shared Resource, and the Wisconsin Survivorship Research Program. Special thanks to Jim Zacny, PhD, and Cibele Barbosa Carroll, MD, MPH, for their edits and work on survivorship care.

Funding

This work was supported by the NCI Cancer Center Support Grant P30 CA014520 and by grant UL1TR000427 to UW ICTR from NIH/NCATS and the University of Wisconsin-Madison School of Medicine and Public Health’s Wisconsin Partnership Program WPP-ICTR grant # 3086. AJT received support from the Clinical and Translational Science Award (CTSA) program through the NIH National Center for Advancing Translational Sciences (NCATS), grant KL2TR000428. Additional support was provided from the University of Wisconsin Graft-versus-Host Disease Fund and the Don W. Anderson Family. The Summer Research Program was funded by institutional foundation award from the Herman and Gwen Shapiro Foundation.

Author information

Authors and Affiliations

  1. University of Wisconsin, Madison, WI, USA

    Colleen Morken, Amye J. Tevaarwerk, Mark B. Juckett, James E. Haine & Mary E. Sesto

  2. Carbone Cancer Center, University of Wisconsin, Madison, WI, USA

    Amye J. Tevaarwerk, Mark B. Juckett, Amanda K. Swiecichowski, James E. Haine, Xiao Zhang, Zachary T. Williams, Bethaney Campbell & Mary E. Sesto

  3. Gilda’s Club, Middleton, WI, USA

    Kirsten Norslien

  4. ProHealth Care, Pewaukee, WI, USA

    Timothy Wassenaar

  5. Department of Medicine, Division of Hematology/Oncology, University of Wisconsin, 6057 Wisconsin Institutes for Medical Research, 1111 Highland Ave, Madison, WI, 53705, USA

    Mary E. Sesto

Authors
  1. Colleen Morken
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  2. Amye J. Tevaarwerk
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  3. Mark B. Juckett
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  4. Amanda K. Swiecichowski
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  5. James E. Haine
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  6. Xiao Zhang
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  7. Zachary T. Williams
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  8. Kirsten Norslien
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  9. Bethaney Campbell
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  10. Timothy Wassenaar
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  11. Mary E. Sesto
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Mary E. Sesto, Amye J. Tevaarwerk, Xiao Zhang, and Colleen M. Morken. The first draft of the manuscript was written by Colleen Morken, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Mary E. Sesto.

Ethics declarations

Ethics approval

All study activities were approved by the University of Wisconsin (UW) Health Sciences Institutional Review Board.

Consent to participate

Survivors:

“You have been sent this survey because you have been identified as a patient who has received a bone marrow transplant.

We are interested in your views on the University of Wisconsin Carbone Cancer Center’s initiative to provide a document called a Survivorship Care Plan to patients, their primary care team, and referring oncologists. Survivorship Care Plans summarize cancer diagnosis, treatment and follow-up visits and testing recommendations. Participation involves taking an online survey that is mostly multiple choice. The survey will take approximately 30 min to complete. We recommend using a desktop or tablet rather than a phone, if you are completing this survey online. You will be paid $20 after completing this survey.

Your participation in this research is voluntary and you may withdraw at any time. If you decide not to participate in this study or if you withdraw from participating, you will not be penalized. Your responses will be confidential—we will not collect identifying information such as your name, email address or IP address. To help protect your confidentiality, individual survey results will NOT be shared. The results of this study will be used for scholarly purposes. All data is stored in a password protected electronic format on a secure server.

If you have questions about the research study, please contact Chris Mulhern at 608–265-3794 or clmulhern@wisc.edu.This research has been reviewed according to UW IRB procedures for research involving human subjects.

By completing the survey, you are agreeing to participate in the research.”

Clinicians:

“You have been sent this survey because you have been identified as a clinician caring for bone marrow transplant survivors. We are interested in your views on the University of Wisconsin Carbone Cancer Center’s initiative to provide a document called a Survivorship Care Plan to bone marrow transplant patients and their referring clinicians (e.g., primary care, oncology). The purpose of this research is to assess the clinical usefulness of Survivorship Care Plans and to understand what information referring clinicians need in order to care for bone marrow transplant patients.

Participation involves taking an online survey that is mostly multiple choice. The survey will take approximately 20 min to complete. We recommend using a desktop or tablet rather than a phone. Your participation in this research is voluntary and you may withdraw at any time. If you decide not to participate in this study or if you withdraw from participating, you will not be penalized. You are not expected to directly benefit from this study, however the information learned from this study may make it easier for oncologists to create and provide care plans to cancer survivors. There is a small risk of loss of confidentiality. To decrease this risk, the survey is anonymous. We will not collect identifying information such as your name, email address or IP address and individual survey results will NOT be shared. The results of this study will be used for scholarly purposes. All data is stored in a password protected electronic format on a secure server.

If you have questions about the research study, please contact the Dr. Mark Juckett, MD, study Principal Investigator at mbj@medicine.wisc.edu or 608–263-0338. This research has been reviewed according to UW IRB procedures for research involving human subjects.

By completing the survey, you are agreeing to participate in the research.”

Consent for publication

The authors affirm that human research participants provided informed consent for publication.

Conflict of interest

Tevaarwerk, Amye J—Epic Systems (family member). The rest of the authors declare no competing interests.

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Previous presentations

“Improving Care Transitions in healthcare: a human factors approach,” presented at the International Human Factors and Ergonomics Meeting, Philadelphia, PA, 2018.

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Morken, C., Tevaarwerk, A.J., Juckett, M.B. et al. Barriers and facilitators to the use of survivorship care plans by hematopoietic stem cell transplant survivors and clinicians. Support Care Cancer 30, 1323–1330 (2022). https://doi.org/10.1007/s00520-021-06492-3

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