Hematopoietic stem cell transplantation — allogeneic transplant, in particular — requires patients and their caregivers to travel a complicated journey with a prolonged recovery period. Many patients and caregivers find they are not prepared for two or more years of recovery and follow-up clinic visits. Those patients who live some distance from the stem cell transplant center are especially burdened by the logistics and cost of travel. Financial burden, sometimes described as financial toxicity, has been a focus of a number of patient-centered studies at Dana-Farber and other cancer centers. Coordination of care between local hematology-oncology teams and the specialist center during long-term follow-up is emerging as an important factor for patient satisfaction, management of costs, and quality of life.
Dana-Farber investigators and administrators recognize these challenges and are invested in a shared care effort in collaboration with local teams. A shared care approach allows patients to receive more of their follow-up care closer to home in a way that still maintains full access to Dana-Farber's specialized clinical teams. Using the shared care model, Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC) and community providers collaborate throughout the continuum of cancer care, and medical services are delivered in a coordinated and cost-effective manner in the patient’s best interest.
A first step towards developing a shared care model was a pilot with New York Oncology Hematology, a large oncology practice, to better understand patient and caregiver needs in a shared care approach. Guiding principles were established, including education of designated staff at local oncology sites for post-transplant monitoring, communication pathways, and documentation requirements. Enhanced, more accessible patient and caregiver education tools were developed. Patient and caregiver surveys of the pilot were universally positive.
Based on the results of the pilot, Gregory Abel, MD, MPH, a faculty member of Dana-Farber's Population Sciences program and an oncologist in the Division of Hematologic Malignancies, worked with the transplant teams to develop a research plan, which was funded by Patient-Centered Outcomes Research Institute (PCORI). This project includes a randomized trial comparing shared care with usual care for patients from seven sites around New England, evaluating 100-day non-relapse mortality along with patient and caregiver surveys of patient-reported measures for the first 180 days post-allogeneic transplant. Enrollment of patients began December 2017.
In addition to these efforts, Dana-Farber has established a post-transplant shared care program with Lifespan of Rhode Island that will allow Rhode Island patients to rapidly transition care to Rhode Island Hospital post-transplant, in collaboration with Dana-Farber transplant providers.
To further support major oncology practices and medical centers with education focused on caring for post-transplant patients in close collaboration with transplant teams at Dana-Farber, enhanced observerships at Dana-Farber and Brigham and Women's Hospital are offered to practitioners from shared care partners. (More general observerships from students or physicians from non-affiliated practices had to be discontinued several years ago due to lack of space and liability concerns.) In addition, MDs, APPs, and RNs from affiliated shared care practices attend an annual three-day open house and intensive training with care coordination discussions at Dana-Farber. In September 2017, over 50 community partners attended Dana-Farber's "Caring for Stem Cell Transplant Patients" education event to discuss logistics, documentation, communication, and shared care strategies, and to review the latest in post-transplant management of complications. This event is open to all interested clinicians and will be held again the fall of 2018. Dana-Farber faculty also provide continuing education at the local sites.
The goal of the shared care model is to have patients seen by their referring physicians as soon as feasible and as frequently as possible after transplant, typically after engraftment. This allows patients to maintain key local clinical relationships and access to resources in their community, reduce the burden of travel to the transplant center, and encourage patients to seek medical attention without delay closer to home. In most cases, the patient will be seen at Dana-Farber every other visit until the clinical teams agree it is safe for patients to be seen more frequently closer to home.