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Individualized care plans in HCT survivors
potential late effects, and practical guidance regarding rec- ommended preventive care that survivors could easily understand and share, which may have empowered them in the CTXD domains (e.g. uncertainty, health burden and medical demands) and MCS domains (e.g. mental health, social functioning, role-emotional), leading to the improvement in those areas.55
Some limitations of our study must be acknowledged. First, the treatment summary portion of our SCP primarily included HCT-related and post-transplant events and did not have detailed information on pre-transplant exposures as those data are not captured comprehensively by the CIBMTR. However, transplant centers have the option to add information about those exposures to the basic tem- plate of the SCP. Participants who completed 6-month assessments were more likely White and had higher health literacy, which may limit the extent to which our findings can be generalized. However, this is reflective of the prevailing healthcare disparities in HCT, and research on other interventions to facilitate SCP use in this under- served population is needed.56 Notwithstanding these lim- itations, the pragmatic nature of our study eligibility crite- ria and schema will make our results broadly applicable to transplant centers in the US.
An ideal mechanism to provide SCPs to HCT survivors would involve a dynamic, adaptable, and patient-specific shared-decision making approach between patients, their transplant centers, and other providers. However, several challenges prevent centers from providing this tool to facilitate survivorship care for their patients, and SCPs that can be generated efficiently and without requiring signifi- cant center resources would have an impact on patient care. Our study supports further implementation of an individualized SCP generated using CIBMTR data in a population of HCT survivors that is at significant risk for late morbidity and mortality. Future research will examine the role of the SCP instrument in preventing specific late complications, in facilitating co-ordination of care, and will serve as a platform for investigating novel methods for survivorship care delivery and implementation.
Acknowledgments
Key to the success of this patient-centered outcomes research study were the many contributions and engagement of our more than 40 stakeholder group representatives including: transplant recipients, caregivers, community hematology/oncology physi-
cians, and transplant physicians, nurses, social workers, patient health educators, and patient advocates. We are deeply indebted to the National Marrow Donor Program’s Patient Services Advisory Group, which includes representation from many of these stakeholder groups, of whom several members participated in the protocol team for this study or provided feedback and guid- ance on study design and interpretation of results. The study investigators would like to the following transplant centers for enrolling patients on this study (site investigators are listed in parentheses): Baylor University, Dallas, TX (Jana Reynolds); Cleveland Clinic, Cleveland, OH (Navneet Majhail); Fred Hutchinson Cancer Research Center, Seattle, WA (K Scott Baker), Karmanos Cancer Institute, Detroit, MI (Abhinav Deol); Loyola University, Chicago, IL (Patrick Stiff); Mayo Clinic, Rochester, MN (Shahrukh Hashmi); Mayo Clinic, Scottsdale, AZ (Nandita Khera); Ohio State University, Columbus, OH (Samantha Jaglowski); Roswell Park Comprehensive Cancer Center, Buffalo, NY (Theresa Hahn); UMass Memorial Medical Center, Worcester, MA (Jan Cerny); University of Florida, Gainesville, FL (John R. Wingard); University of Kansas, Kansas City, KS (Joseph McGuirk); University of Minnesota, Minneapolis, MN (Shernan Holtan); University of North Carolina, Chapel Hill, NC (William Wood); University of Pennsylvania, Philadelphia, PA (Alison Loren); Vanderbilt University, Nashville, TN (Bipin Savani). We are especially grateful to study coordinators at all sites who worked tirelessly and often outside regular working hours to contact and enroll patients on our trial. We would also like to thank members of CIBMTR’s Health Services Research (HSR) Program and Resource for Clinical Investigation in Blood and Marrow Transplantation (RCI BMT), including their Survey Research Group, who helped with study conduct, data collection and man- agement, and performed patient interviews.
Funding
This study was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CD-12-11-4062). The views in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Patient- Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee. K. Scott Baker, Navneet Majhail and Karen Syrjala are partially supported by a grant from the National Cancer Institute (R01-CA215134). The con- tent is solely the responsibility of the authors and does not neces- sarily represent the official views of the National Institutes of Health.
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