The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT survivors and nontransplantation clinicians (oncologists and primary care physicians) were invited to participate in a survey evaluating the usefulness and utility of a sample HSCT-specific SCP with a treatment summary generated by autopopulation from an electronic health record (EHR). All participating HSCT survivors (n = 29) and clinicians (n = 18) indicated a desire to receive an SCP. More than 85% of the participants perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, and graft-versus-host disease and other late/chronic side effects to be useful. The majority of survivors also believed that care team contact information was useful. In addition, >85% of survivors and clinicians agreed that the SCP increased their understanding of treatments and chronic/late side effects, improved health care provided, and were satisfied with the SCP and found it understandable and easy to use. The majority of survivors indicated that additional information should be added to the SCP, whereas some clinicians deemed the SCP too long. Survivors preferred to receive the SCP as a paper document at the end of a regular follow-up visit and review it with a cancer clinician, whereas clinicians preferred to receive the SCP through the EHR. These findings will help improve the design of future SCPs for use by HSCT survivors and clinicians. Future work will include leveraging the EHR to ease the burden of creating user-centered documents.
Bibliographical noteFunding Information:
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. This work was presented in part at the 17th Annual Medical Student Research Forum, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, November 19, 2018 and in abstract form at the 2019 Transplantation and Cellular Therapy Meetings of the ASBMT and CIBMTR, Houston, Texas, February 20-24, 2019. Financial disclosure: This work is supported by funding from the NCI Cancer Center Support Grant P30 CA014520 and by grant UL1TR000427 to UW ICTR from NIH/NCATS. 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. Conflict of interest statement: There are no conflicts of interest to report. Financial disclosure: See Acknowledgments on page 1246.
Financial disclosure : This work is supported by funding from the NCI Cancer Center Support Grant P30 CA014520 and by grant UL1TR000427 to UW ICTR from NIH/NCATS. 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.
© 2019 American Society for Blood and Marrow Transplantation
- Clinician satisfaction
- Hematopoietic stem cell transplantation
- Survivor satisfaction
- Survivorship care plan