The service receives over 3200 queries annually from patients and community providers about caring for patients after transplant. Most queries are about how to diagnose and manage cGVHD, infections, immunizations, relapse, subsequent malignancies, and psychosocial issues. The queries can be as varied as the patients, and much nursing time is spent providing patient education and coaching, as well as connecting patients with resources in their own communities around the world and providing empathic listening as patients attempt to reintegrate and adjust to their new normal. During LTFU Telemedicine rounds, scheduled for two hours thrice weekly, nurses present cases to the LTFU attending physician using outside clinical records, outside scanned images, community‐completed GVHD Assessment and Scoring Forms and Rodnan skin scales, as well as digital photographs of the oral cavity, range of motion changes and skin changes to aid in decision making. Telephone outreach between the LTFU attending and community medical providers typically takes place during scheduled rounds to provide recommendations, education and support for caring for these complex patients who often comprise a small portion of a community oncologist’s patient panel. The LTFU attending may also reach out via telephone to select patients and primary care physicians during rounds to complete an assessment or provide recommendations directly. Additionally, the LTFU Telemedicine service utilizes SCCA subspecialists for queries that need the expertise of pulmonary, gynecology, oral medicine, infectious disease, gastroenterology, psychiatry, dietary, pharmacy and social work. For patients and their community oncologists, the service is an important tool for improved patient outcomes as well as a distinguishing feature that lends itself to improved satisfaction. The LTFU Telemedicine service is a key element of the SCCA HCT program which has consistently reported superior survival statistics together with a few other American HCT centers that report to the CIBMTR.
As part of process improvements, the SCCA LTFU Telemedicine team developed mechanisms to measure outcomes such as turn‐around time to callers to ensure that program standards are being met. Additionally, the service utilizes innovative ways to support the care of HCT survivors in the community such as periodic LTFU Nursing Summits where nurses from community practices are invited and given funding to attend an on‐site summit with the LTFU attendings and telemedicine nurses for education on HCT survivorship care and to build relationships that best support LTFU patient outcomes. Additionally, the LTFU Telemedicine team is exploring ways to bring in a broader range of technologies to offer real‐time care of remote LTFU patients in the community.
Figure 4.1 Fred Hutch/SCCA Transplant Clinical Model Timeline that Includes LTFU Telemedicine.
The primary challenge with the Fred Hutch/SCCA LTFU Telemedicine model is that it is structured as a pro bono service and has never collected fees for providing access to specialist care at a distance. The LTFU clinic operates on a standard fee‐for‐service structure, and many of the in‐person clinic appointments originate from telemedicine queries. However, there is currently no direct reimbursement for nursing or physician time spent providing consultation services to remote patients and providing critical assistance to community physicians, including care coordination and hospital‐to‐hospital transference. This pioneering LTFU Telemedicine program is supported by institutional funds due to its recognized value for improved HCT survival of patients transplanted at Fred Hutch/SCCA [42,43]. Though difficult to quantify, the superior survival outcomes specifically in those with more severe forms of cGVHD [42] are believed to be influenced in part by the expert consultation service provided by the LTFU Telemedicine team.
Another challenge with the telemedicine model is the “bias towards (the) best connected,” described recently [52] as the divide between those who have the access and the technology literacy necessary to take advantage of a telehealth program. For example, it is difficult for some patients to obtain and send digital photographs to LTFU telemedicine if they lack a caregiver to take the photos or lack internet access. A final challenge is that the consultative nature of the service allows for intervention only when patients and providers reach out the LTFU telemedicine for assistance. Despite best efforts to engage to community physicians at time of discharge with a robust hand‐off and invitation to access LTFU, and mandatory education for patients and caregivers prior to departure that includes how to access LTFU Telemedicine, some survivor/provider dyads never call LTFU or do not call until cGVHD is severe or other major events occur. While a continuing posttransplant care model is not feasible for all HCT survivors at the Fred Hutch/SCCA, due to the resource availability and geographic distribution of the patient population, such a model may allow for earlier intervention of late posttransplant complications.
Future directions
Telemedicine is having an increasingly important role in the current healthcare system. More than 60% of all healthcare institutions and up to 50% of all hospitals in the US currently use some form of telehealth [53]. As technology continuously evolves, we anticipate that future telemedicine models will include a rich array of data information garnered from wearable sensors and mobile diagnostic systems. In addition to frequent virtual visits from physicians, nurses, social workers, and therapists, telemedicine will be used to educate patients and local providers. We described the Fred Hutch/SCCA as one type of telemedicine model where local providers can request a consultation with a LTFU expert to help manage late effects of transplant recipients. Another example OF where telehealth may be used to improve survivorship care is Project ECHO (Extension for Community Healthcare Outcomes). Established at the University of New Mexico Health Sciences Center (UNM‐HSC), Project ECHO trains and supports local providers to deliver high‐quality care for chronic and complex conditions to patients in their own communities while monitoring outcomes to ensure quality of care [54]. This type of tele‐educational service, in conjunction with virtual visits with the patient, may have value in LTFU.
Engagement of local providers and delivery of long‐term transplant care through telemedicine is anticipated to have more precedence as more than 200,000 allogeneic HCT survivors are expected by 2030[55] and may exceed the capacity of small and large transplant centers to provide frequent and ongoing long‐term care. This growth in number, as well as projected shortages in the BMT workforce, the continuous innovation in the telecommunication and technology market, the advancement in integration of telehealth services into electronic health records and clinical‐decision support systems, the reorganization in the delivery and financing of medical care, and the growth of consumerism in healthcare with increasing expectations for convenience and real‐time access to health services, will accelerate telemedicine adoption into the delivery of LTFU care [56]. At this time, there has yet to be a prospective, randomized clinical trial comparing long‐term survival, quality‐of‐life, financial burden, and other patient‐reported outcomes between a LTFU telemedicine model to the dedicated LTFU clinic model. While the evidence to support the efficacy of the LTFU telemedicine model does not yet exist, we believe that telemedicine has profound value in the healthcare delivery of care for our long‐term transplant survivors.
References
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