Who is INSPIREd to join online survivorship care plans?

From the Syrjala group (Clinical Research Division)

Hematopoietic cell transplant (HCT) is a lifesaving treatment for multiple cancers including leukemia and lymphoma. However, HCT is not without complications, and patients who receive HCT are at higher risk for infection, cardiovascular disease, and secondary cancers compared to the general population. As such, HCT survivors report higher rates of distress following treatment, as well as higher rates of moderate to severe depression. The distress can be exacerbated by the transition from care by an oncology team to primary care that generally happens around two years after HCT. By 2030, it is estimated that the US will have over half a million long term survivors (2+ years) who underwent HCT during disease treatment. Survivorship care plans (SCPs) can help the patient with their transition to primary care from cancer treatment and beyond. Additional SCPs can provide details to primary care physicians that allow them to better monitor survivors for common complications. Internet-based programs that provide continued guidance have not been well studied as platforms for SCPs. However, internet-based programs can be easily customized with minimal cost and has the potential to reach a wider patient base who may not have access to routine medical care. The Syrjala Group (Clinical Research Division) wanted to understand who would be likely to enroll in an internet-based platform. The results of their investigation were recently published in Biology of Blood and Marrow Transplantation.

The INSPIRE (an Internet Survivorship Program with Information and Resources) platform was developed to improve distress, depression, and healthcare adherence in HCT patients. Patients who received an HCT from one of six participating institutions within the last 2-10 years were eligible for the trial. Patients were excluded if they had active disease in the last two years or did not have access to internet or email. The team reached out to 3,926 HCT patients by mail and telephone, of which 2,578 were eligible, and 1,065 enrolled in the study. Of patients who were approached for enrollment, 7% had no access to internet or email or did not feel capable of using it, which corresponded with other studies showing 90% of US households have access to internet. 82% of those enrolled required at least one follow up phone call in order to complete the registration and consent process, an important factor when allocating resources to such a platform. Once enrolled, 89% of participants completed the baseline assessment, indicating fairly high engagement with the platform. The mean age of enrollees was 56.2 years, and 94% were Caucasian. Of all groups, those that were 40+ years old, women, or chronic graft-versus-host-disease (a common complication of HCT) patients were more likely to enroll. Additionally, Native Americans and Alaska natives were more likely to enroll. African Americans were three times less likely to enroll than other groups, and less likely to complete their baseline assessments once enrolled. Latinx groups and younger participants of all ethnic groups were also less likely to complete their baseline assessment. The authors acknowledged that this study was not ethnically diverse, though this reflects the diversity (or lack thereof) of HCT recipients. Additionally, the platform was only offered in English and expanding language options may help with additionally enrollment and engagement. Overall, the study gives insight into who might enroll in an online-based platform for survivorship care, a critical first step in expanding access to care after HCT. 

UW/Fred Hutch Cancer Consortium members Wendy Leisenring, Mary Flowers, Stephanie Lee, and Karen Syrjala contributed to this work.

Yi J, Sullivan B, Leisenring W, Majhail N, Jim H, Loren A, Uberti J, Whalen V, Flowers M, Lee S, Maynard K, Syrjala K. 2020. Who Enrolls in an Online Cancer Survivorship Program? Reach of the INSPIRE Randomized Controlled Trial for Hematopoietic Cell Transplantation Survivors. Biol Blood Marrow Transplant. doi: 10.1016/j.bbmt.2020.06.017


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