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The Fred Hutchinson Cancer Research Center, the “Fred Hutch” and the Seattle Cancer Care Alliance (SCCA) have a long history of LTFU program for HCT survivors. Figure 4.1 depicts the Fred Hutch/SCCA Transplant Clinical Model Timeline that includes LTFU Telemedicine. This comprehensive LTFU program has its very roots in delivering consultation at a distance to their HCT survivors over the telephone. The program evolved in response to a clear need from community oncologists around the country and the world who received Fred Hutch HCT survivors back into their care posttransplant. Initially, research nurses phoned the community oncologists to obtain follow up information and ask for research samples to be mailed to the Fred Hutch on study participants. Questions were common from community oncologist about how to care for LTFU patients after this new treatment modality. This, together with the recognition of new complications not seen early posttransplant and the increasing LTFU population who lived at a long distance from the HCT center, clearly indicated the need for establishing a LTFU survivorship service. In response to this need, the Fred Hutch, and later in partnership with the SCCA, established a dedicated telemedicine service for LTFU patients and those caring for HCT recipients who had returned home after their early posttransplant period in Seattle. This service has grown from a couple of clinicians answering the phones to a robust team of survivorship attending physicians, dedicated LTFU telephone triage RNs and support staff who answer questions from over 6000 survivors and their community physicians.

The LTFU Telemedicine service makes up a portion of the Fred Hutch/SCCA comprehensive LTFU program which includes research that regularly sends surveys to all HCT survivors (Fred Hutch) and LTFU Clinical service at the SCCA. The LTFU program is a consultative service which supports patients’ community oncologists and primary care providers responsible for their primary care. The LTFU attending directs management of LTFU cases that come in via telemedicine in collaboration with primary care physicians. The LTFU triage nurses independently manage queries that are within the scope of nursing practice as well as prepare cases for LTFU Telemedicine rounds that need LTFU attending oversight. The support staff help patients and community physicians navigate telemedicine and in‐person LTFU care visits at the SCCA.

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.