Survivors of hematopoietic cell transplantation (HCT) remain at risk for late complications related to chemotherapy and other treatment exposures. These include organ failure (heart, kidney, lung, liver), bone loss and bone complications, new cancers, endocrine disorders, quality of life impairments and psychosocial issues that can contribute to significant morbidity and mortality and decreased quality of life. A recent randomized controlled trial of one- to five-year HCT survivors demonstrates that the use of survivorship care plans derived from registry data and personalized to patient-specific exposures is associated with improved mental health domain of quality of life (QOL) and reduced distress.
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The need for a plan of care
Though guidelines for screening and prevention of late complications in HCT survivors are well-established, patients often don’t know or follow them. Patients who don’t know the risks they face may not prioritize preventive care. There are challenges with transition and coordination of care as transplant survivors return to follow up with their nontransplant clinical providers.
Capacity limitations at transplant centers compound the problem. Access is an ongoing, systemic issue, one Cleveland Clinic has addressed with the Victor Fazio, MD, BMT Cancer Survivorship Clinic, which provides comprehensive survivorship care and monitors patients for late complications of chemotherapy and HCT, including post-transplant immune complication graft-versus-host disease (GvHD).
Care plans in survivorship care
A survivorship care plan is a patient education tool that provides survivors with information on cancer type and treatment as well as recommends preventive and follow-up care. Randomized trials haven’t shown much benefit, and resources are scarce, so why bother? But Navneet Majhail, MD, MS, Director of the Blood & Marrow Transplant Program at Cleveland Clinic, believes they are critical for HCT survivors.
“The challenges of providing and implementing survivorship care plans are accentuated for HCT survivors,” says Dr. Majhail. “We can improve survivor care by providing tools that facilitate and empower transplant patients’ take greater ownership of their preventive care.”
A multicenter study enrolled adult HCT survivors (N = 495) one to five years post-transplantation without relapse or secondary cancers, randomizing patients to routine post-transplant care or an individualized treatment summary and survivorship care plan. Treatment summaries were generated using data that transplant centers routinely submit to the national HCT registry, the Center for International Blood and Marrow Transplant Research (CIBMTR). Based on risk-factors identified through these data and published guidelines, patient-specific care plans were developed. Patients were surveyed by phone at baseline and six months. The trial’s primary endpoint was confidence in survivorship information. Secondary endpoints included knowledge of transplant exposures, cancer and treatment distress, health-related quality of life (using SF-12) and healthcare utilization.
While the study found no association between SCPs and confidence in survivorship information, the authors did observe a significant decrease in cancer and treatment distress scores and increase in the mental component summary of SF-12 measuring healthcare quality of life. The decrease in distress was independent of diagnosis, transplant type, health literacy, GvHD status and sex. At six months, a large proportion of participants reported finding the SCP somewhat or very useful for helping them understand their HCT, potential side effects and general health management.
Streamlining the process
“Our study lays the foundation for further development and implementation of our personalized survivorship care plan for transplant recipients. Using data that are already collected through the CIBMTR, there is an opportunity here to make the process of generating and providing patients their care plan more efficient and less resource intensive for transplant centers. This is particularly important since this intervention clearly has an impact on helping our patients,” says Dr. Majhail.
This multicenter study was funded by the Patient Centered Outcomes Research Institute and was conducted through the CIBMTR with Dr. Majhail, Elizabeth Murphy, EdD, RN, of the National Marrow Donor Program and K. Scott Baker, MD, MS, of Fred Hutchinson Cancer Research Center serving as co-principal investigators. Dr. Majhail and his colleagues are now conducting a follow-up study funded by an R01 grant from the National Cancer Institute, where their care plan is being investigated in combination with an online health platform to improve preventive care among HCT survivors with certain late complications (NCT03125070).