7. PROJECT SUMMARY/ABSTRACT
By 2030, there will be an estimated half a million hematopoietic cell transplant (HCT) survivors in the US. HCT
survivors have higher rates of late mortality and adverse effects compared to other cancer treatments. Long-
term complications include high rates of cardiovascular disease, metabolic syndrome, and new cancers along
with psychosocial difficulties including elevated cancer-related distress and depression. This proposal
integrates, extends, and improves two successful HCT survivorship programs tested in randomized controlled
trials (RCTs) and will fill a critical gap in care for HCT survivors by providing a novel, technology based
survivorship care program to provide personalized self-management skills and interactive support. The
proposed RCT will be offered to HCT survivors at the point of their greatest need as they transition away from
close monitoring at their transplant centers. It will combine an online, social media and mobile application
INSPIRE program, with a personalized and HCT-specific treatment summary and survivorship care plan
(SCP). Informatics will integrate the data and study conduct resources of the Center for International Blood and
Marrow Transplant Research (CIBMTR) and the National Marrow Donor Program (NMDP). The specific aims
are to: 1) Among HCT survivors with poor health care adherence to cardiometabolic or new cancer
surveillance and/or elevated cancer-related distress, determine the impact of a patient-centered, self-
management stepped care program compared to an active control group provided access to HCT survivorship
best practices; 2) Determine characteristics of intervention participants who require telehealth stepped care at
1-month; and 3) Determine resources that would be needed to sustain the intervention as a national HCT
survivorship program if implemented through the CIBMTR//NMDP (i.e., costs, level of expertise, and use of
intervention components relative to costs). These aims will be accomplished in a multicenter RCT of N=980
2-5 year HCT survivors randomized to a self-management, stepped care program beginning with the online
INSPIRE program plus a personalized SCP (electronically populated with existing CIBMTR data resources)
and adding telehealth self-management for those who fail to improve after 1 month, versus an active control
group provided access to the personalized SCP and a control website. Primary outcomes will be improved
adherence to cardiometabolic and second cancer surveillance guidelines and distress at 12 months. The
proposed intervention uses a sustainable informatics administration system for study management and
intervention delivery, and potentially improves effect sizes of earlier studies by adding a larger ‘dose’ of the
intervention through the addition of telehealth stepped care for those who do not respond to the online program
alone. If the program demonstrates efficacy it could be readily implemented to improve the standard of care
nationally for HCT survivors by leveraging the existing infrastructure of the CIBMTR/NMDP.
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