Survivorship care plan improves cancer care-related distress levels for HCT recipients
MINNEAPOLIS, December 11, 2017 – Patients treated with hematopoietic cell transplantation (HCT), also known as blood and marrow transplant, have a higher risk for long-term or late complications such as organ damage, cardiovascular disease, bone loss and second cancers. These complications begin with chemotherapy and radiation therapy and require ongoing medical follow-up care. Results from a recent multicenter, randomized, controlled study show that a personalized 'Survivorship Care Plan' can significantly reduce a patient's stress level related to their cancer treatment.  The study was presented at the American Society of Hematology (ASH) Annual Meeting on December 10, at 7:30 a.m. EST.
This study was partially funded by an award from the Patient-Centered Outcomes Research Institute (PCORI). First, researchers gathered information from 80 focus group participants regarding what information they would like to see in a Survivorship Care Plan, how they would like it to look and how they prefer to receive the plan.
Second, researchers enrolled 495 transplant survivors who were 1-5 years out from their transplant and randomly assigned them to 1 of 2 groups. One group received a personalized Survivorship Care Plan while the other group received standard follow-up care instructions. The Survivorship Care Plans were generated using patient-specific clinical data reported to the CIBMTR® (Center for International Blood and Marrow Transplant Research®) and published guidelines for long-term follow-up of HCT survivors . The groups were followed 6 months later to see if the care plan helped patients improve their confidence in knowing what tests and exams they should get after HCT, as well as reduce their stress related to cancer treatments.
"Transplant survivors remain at risk for late complications and require lifelong monitoring for their prevention and management," said Navneet Majhail, M.D., M.S., lead study author and director of the Blood & Marrow Transplant Program at the Cleveland Clinic Taussig Cancer Center. "However, several health system, institutional, provider and patient barriers prevent them from obtaining appropriate long-term care. We strongly feel that empowering patients with knowledge and information will facilitate their survivorship care." Elizabeth Murphy, Ed.D., R.N., from the Be The Match/National Marrow Donor Program and K Scott Baker, M.D., M.S., from the Fred Hutchinson Cancer Research Center co-lead the study with Majhail. Seventeen transplant centers in the United States participated and enrolled patients on the study.
Majhail, who presented the study results at the meeting, continued, "With this background, we designed our study to test the efficacy of a treatment summary and survivorship care plan on patient knowledge, distress, and several other secondary endpoints related to healthcare utilization and patient-reported outcomes in our specialized patient population. Our trial was highly innovative in that the care plans were individualized to patient treatment exposures that have been identified through international guidelines for preventing transplant-specific late effects, and were generated using data transplant centers routinely submit to the CIBMTR."
Results of this study will be used to empower transplant survivors to have better conversations with their doctors based on an individualized plan to guide more informed decisions about their healthcare post-transplant.
According to Majhail, "Ultimately, just providing the individualized survivorship care plan decreased distress over a 6 month period compared to transplant survivors who did not receive the intervention."
The results from this study also highlight the potential for personalized care plans, based on patient risk factors and treatment exposures, to be generated from a centralized clinical registry database such as CIBMTR. This can reduce the burden on health care professionals to create an individualized plan for patients that can guide physicians and health care professionals in providing follow up screening and care.
 Majhail NS, et al. Blood 2017 130:331.
 Majhail NS, et al. Biol Blood Marrow Transplant, 2012, 18(3): 348-371.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
The CIBMTR® (Center for International Blood and Marrow Transplant Research®) is a research collaboration between the National Marrow Donor Program® (NMDP)/Be The Match® and the Medical College of Wisconsin (MCW). The CIBMTR collaborates with the global scientific community to advance hematopoietic cell transplantation and cellular therapy worldwide to increase survival and enrich quality of life for patients.
About National Marrow Donor Program/Be The Match
For people with life-threatening blood cancers–like leukemia and lymphoma–or other diseases, a cure exists. Be The Match® connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant. People can contribute to the cure as a member of the Be The Match Registry®, a financial contributor or a volunteer. Be The Match provides patients and their families one-on-one support, education and guidance before, during and after the transplant.
Be The Match is operated by the National Marrow Donor Program® (NMDP), a nonprofit organization that matches patients with donors, educates health care professionals and conducts research through its research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®), so more lives can be saved. To learn more about the cure, visit BeTheMatch.org or call 1 (800) MARROW-2.
Be The Match/National Marrow Donor Program